The information on this site is not intended or implied to be a substitute for professional medical advice, diagnosis or treatment. Content within the patient forum is user-generated and has not been reviewed by medical professionals. Other sections of the Melanoma Research Foundation website include information that has been reviewed by medical professionals as appropriate. All medical decisions should be made in consultation with your doctor or other qualified medical professional.

mucosal

Forums Mucosal Melanoma Community mucosal

  • Post
    Bethj
    Participant

      Has anyone else here been diagnosed mucosal?

      Has anyone else here been diagnosed mucosal?

    Viewing 41 reply threads
    • Replies
        Phil S
        Participant
          Yes, there are a few of us that post on this bulletin. My husband, Phil was diagnosed with mucosal anal melanoma in Jan. 2010. Did you have a specific question? Valerie (Phil’s wife)
            Tennisgrl
            Participant
              What was his treatment I also have rectal melanoma and would love to talk with others
              Make2DayCount
              Participant

                Sorry for the late response to this, I'm just now seeing it for some reason. How are you doing? My business partner was also diagnosed with rectal mucosal melanoma late last year, had a full APR and is now in a clinical trial.  

                Frankfrank806
                Participant

                  How is your partner? I just was diagnosed with mucosal anorectal melanoma.   Having a hard time finding anyone that has had positive results.  I'm 42 and not ready to give up!  

                  Frankfrank806
                  Participant

                    How is your partner? I just was diagnosed with mucosal anorectal melanoma.   Having a hard time finding anyone that has had positive results.  I'm 42 and not ready to give up!  

                    Frankfrank806
                    Participant

                      How is your partner? I just was diagnosed with mucosal anorectal melanoma.   Having a hard time finding anyone that has had positive results.  I'm 42 and not ready to give up!  

                      Make2DayCount
                      Participant

                        Sorry for the late response to this, I'm just now seeing it for some reason. How are you doing? My business partner was also diagnosed with rectal mucosal melanoma late last year, had a full APR and is now in a clinical trial.  

                        Make2DayCount
                        Participant

                          Sorry for the late response to this, I'm just now seeing it for some reason. How are you doing? My business partner was also diagnosed with rectal mucosal melanoma late last year, had a full APR and is now in a clinical trial.  

                          Tennisgrl
                          Participant
                            What was his treatment I also have rectal melanoma and would love to talk with others
                            Tennisgrl
                            Participant
                              What was his treatment I also have rectal melanoma and would love to talk with others
                            Phil S
                            Participant
                              Yes, there are a few of us that post on this bulletin. My husband, Phil was diagnosed with mucosal anal melanoma in Jan. 2010. Did you have a specific question? Valerie (Phil’s wife)
                              Phil S
                              Participant
                                Yes, there are a few of us that post on this bulletin. My husband, Phil was diagnosed with mucosal anal melanoma in Jan. 2010. Did you have a specific question? Valerie (Phil’s wife)
                                Bethj
                                Participant

                                  My partner was diagnosed with oral last April. She is on the trial drug dasatinib. Has been since Dec. First scans showed improvement. We go back next week for the 3 month interval scans. Hoping for the best. I think I just wanted to break the ice here Valerie. I've been reading the posts for a few months now. Thank you

                                    Phil S
                                    Participant
                                      Welcome to this bulletin, wonderful source of information and support. My husband is also treated at MD Anderson, wishing you the best on the upcoming scans. I am assuming your partner is C-kit positive, to be responding to Dasatinib. My husband is braf and c-kit negative, so just completed 6 rounds of biochemo and we also scan this month in Houston. Keep in touch, we all need each other! Valerie (Phil’s wife)
                                      Phil S
                                      Participant
                                        Welcome to this bulletin, wonderful source of information and support. My husband is also treated at MD Anderson, wishing you the best on the upcoming scans. I am assuming your partner is C-kit positive, to be responding to Dasatinib. My husband is braf and c-kit negative, so just completed 6 rounds of biochemo and we also scan this month in Houston. Keep in touch, we all need each other! Valerie (Phil’s wife)
                                        Phil S
                                        Participant
                                          Welcome to this bulletin, wonderful source of information and support. My husband is also treated at MD Anderson, wishing you the best on the upcoming scans. I am assuming your partner is C-kit positive, to be responding to Dasatinib. My husband is braf and c-kit negative, so just completed 6 rounds of biochemo and we also scan this month in Houston. Keep in touch, we all need each other! Valerie (Phil’s wife)
                                        Bethj
                                        Participant

                                          My partner was diagnosed with oral last April. She is on the trial drug dasatinib. Has been since Dec. First scans showed improvement. We go back next week for the 3 month interval scans. Hoping for the best. I think I just wanted to break the ice here Valerie. I've been reading the posts for a few months now. Thank you

                                          Bethj
                                          Participant

                                            My partner was diagnosed with oral last April. She is on the trial drug dasatinib. Has been since Dec. First scans showed improvement. We go back next week for the 3 month interval scans. Hoping for the best. I think I just wanted to break the ice here Valerie. I've been reading the posts for a few months now. Thank you

                                            jyc
                                            Participant

                                              My father was diagnosed with nasal mucosal melanoma

                                              jyc
                                              Participant

                                                My father was diagnosed with nasal mucosal melanoma

                                                jyc
                                                Participant

                                                  My father was diagnosed with nasal mucosal melanoma

                                                  Becky
                                                  Participant
                                                    Beth my 23 year old son also was dx with oral melanoma (tip of tongue) in July of 09. Positive for melanoma in one lymph node. He did 1 year of interferon. NED since but will have scans next month so am always nervous.
                                                    Becky
                                                    Participant
                                                      Beth my 23 year old son also was dx with oral melanoma (tip of tongue) in July of 09. Positive for melanoma in one lymph node. He did 1 year of interferon. NED since but will have scans next month so am always nervous.
                                                      Becky
                                                      Participant
                                                        Beth my 23 year old son also was dx with oral melanoma (tip of tongue) in July of 09. Positive for melanoma in one lymph node. He did 1 year of interferon. NED since but will have scans next month so am always nervous.
                                                        JerryfromFauq
                                                        Participant

                                                          We need to know more  info to better respond to your status.  Haass the melanoma went to the lymph nodes yet?  What stage was given iin the diagnosis?  This is a serious matter, but do not consider it a hopeless one.  Learn and fight.  Be vigilant, but not paranoid. 

                                                          (I was given up to 6 months to die in March 2007.)

                                                          Was mis-diagnosed for 3 1/2 years as a hemmorhoid, finally biopsied in May 2006 and diagnosed as anal Melanoma.  Welome to look at my profile.   Went to stage IV with innumerable lung tumors in Feb 2007.  Went on IL-2 immediately and was essentially stable thru Dec 2008.  Testing showed I had the C-kit Oncoprotein. Innumerable new tumors quickly developed in my lungs and the old tumors quadrupled in size and new tumors appeared on my neck and groin.                        Tumors were too dark to successfully run the c-kit DNA mutation test on  them.  Talked Oncologist team into starting Gleevec anyway (March 2009).  The first of the targeted drugs ever approved by the FDA.  Still not approved for Melanoma.  During 2009 Clinical trials were started for c-kit melanoma.  Have been essentially stable on the Gleevec for over three years now.  So far no new tumors have been identified.  A few have shrunk, a couple have disappeared.  There are differented targeted drugs along the lines of Gleevec being tested to see which works best  on each of the different C-kit DNA mutations.

                                                              Get tted for The C-kit oncoprotein first.  Any laab should be able to do this test.  The C-kit DNA mutatin tet is more involved and require a specialised lab.  If the first test fails to identify c-kit, then look for other options.  IL-2 has the best record for stopping melanoma for the l ongest time, but even IL-2 only has a 5% rate that approches a cure (10 year aand longer remission rate for stage IV patients.).  It also has a 15% rate of providing a patrial response to across the board melanoma cases.

                                                               I will glad to talk with you either here, in emails or telephonically.

                                                            Bethj
                                                            Participant

                                                              Thanks for the replies and good luck on everyone's scans. Joy,(the patient), had excisional biopsy performed 3-3-11 by her oral surgeon. It revealed invasive mucosal melanoma 2.8mm with 8 mitotic figues and 7mm ulceration. On 4-22-11 she underwent infrastructure maxillectomy and full thickness skin graft. The path report revealed melanoma in situ in the left labial mucosal margin and and in the squamous cell mucosa and the right labial mucosa. She was tested for C-kit at that time, and consistent with axon 11 of that gene. She did 2 1/2 weeks of radiation, starting 5/29. Her followup scans were clear until Dec. 8th. At that time a they noticed development of the submandibular lymph node measuring 1.4cm and a number of pulmonary nodules. The fine needle biopsy revealed metastatic melanoma and just like that, we went to stage 4. Started dasatinib the following week and after the first scans in Jan. it seems to be working. Improvement in size of lung and lymph node. The doseage was reduced from 100mg to 70 after Joy became very ill on the higher dose. The scans next week, 4-18 and 4-19 will be the first after lowering the dose. Hoping and praying the meds are still attacking the cancer.

                                                              JerryfromFauq
                                                              Participant

                                                                Will gladly be praying for both Joy and you and the little ones.  Hope for at  least stability.  I have not researched to learn if Dastinib is considered to be cytostatic or an apoptosis treatment.  There is differing opinons as to whether or not Gleevec is a cytostatic for c-kit or if it might induce apoptosis for c-kit melanoma cells.  If it  is a cytostatic one might need tostay on the treatment for life.  Studies of Gleevec have shown that if stopped at the 3 or five year points that the tumor load gowth rate takes  off again on the cancer tumors that the FDA has approved it for.

                                                                Bethj
                                                                Participant

                                                                  Thank you Jerry and thanks for the info. I had to look up the terminology to understand your post. In the two days I have been on here, I have learned more than pouring through countless hours on the internet. I believe dasantib is cytostatic if I remember Dr Kim correctly. I will make sure next week. Stay strong, I believe you are a wealth of information, determination and inspiration. Beth

                                                                  Bethj
                                                                  Participant

                                                                    Thank you Jerry and thanks for the info. I had to look up the terminology to understand your post. In the two days I have been on here, I have learned more than pouring through countless hours on the internet. I believe dasantib is cytostatic if I remember Dr Kim correctly. I will make sure next week. Stay strong, I believe you are a wealth of information, determination and inspiration. Beth

                                                                    Bethj
                                                                    Participant

                                                                      Thank you Jerry and thanks for the info. I had to look up the terminology to understand your post. In the two days I have been on here, I have learned more than pouring through countless hours on the internet. I believe dasantib is cytostatic if I remember Dr Kim correctly. I will make sure next week. Stay strong, I believe you are a wealth of information, determination and inspiration. Beth

                                                                      MorningGlory
                                                                      Participant

                                                                        Jerry,

                                                                        So happy to hear that you continue to do well.  That is wonderful news, Jerry.

                                                                        Jackie

                                                                        MorningGlory
                                                                        Participant

                                                                          Jerry,

                                                                          So happy to hear that you continue to do well.  That is wonderful news, Jerry.

                                                                          Jackie

                                                                          MorningGlory
                                                                          Participant

                                                                            Jerry,

                                                                            So happy to hear that you continue to do well.  That is wonderful news, Jerry.

                                                                            Jackie

                                                                            JerryfromFauq
                                                                            Participant

                                                                              Will gladly be praying for both Joy and you and the little ones.  Hope for at  least stability.  I have not researched to learn if Dastinib is considered to be cytostatic or an apoptosis treatment.  There is differing opinons as to whether or not Gleevec is a cytostatic for c-kit or if it might induce apoptosis for c-kit melanoma cells.  If it  is a cytostatic one might need tostay on the treatment for life.  Studies of Gleevec have shown that if stopped at the 3 or five year points that the tumor load gowth rate takes  off again on the cancer tumors that the FDA has approved it for.

                                                                              JerryfromFauq
                                                                              Participant

                                                                                Will gladly be praying for both Joy and you and the little ones.  Hope for at  least stability.  I have not researched to learn if Dastinib is considered to be cytostatic or an apoptosis treatment.  There is differing opinons as to whether or not Gleevec is a cytostatic for c-kit or if it might induce apoptosis for c-kit melanoma cells.  If it  is a cytostatic one might need tostay on the treatment for life.  Studies of Gleevec have shown that if stopped at the 3 or five year points that the tumor load gowth rate takes  off again on the cancer tumors that the FDA has approved it for.

                                                                                Bethj
                                                                                Participant

                                                                                  Thanks for the replies and good luck on everyone's scans. Joy,(the patient), had excisional biopsy performed 3-3-11 by her oral surgeon. It revealed invasive mucosal melanoma 2.8mm with 8 mitotic figues and 7mm ulceration. On 4-22-11 she underwent infrastructure maxillectomy and full thickness skin graft. The path report revealed melanoma in situ in the left labial mucosal margin and and in the squamous cell mucosa and the right labial mucosa. She was tested for C-kit at that time, and consistent with axon 11 of that gene. She did 2 1/2 weeks of radiation, starting 5/29. Her followup scans were clear until Dec. 8th. At that time a they noticed development of the submandibular lymph node measuring 1.4cm and a number of pulmonary nodules. The fine needle biopsy revealed metastatic melanoma and just like that, we went to stage 4. Started dasatinib the following week and after the first scans in Jan. it seems to be working. Improvement in size of lung and lymph node. The doseage was reduced from 100mg to 70 after Joy became very ill on the higher dose. The scans next week, 4-18 and 4-19 will be the first after lowering the dose. Hoping and praying the meds are still attacking the cancer.

                                                                                  Bethj
                                                                                  Participant

                                                                                    Thanks for the replies and good luck on everyone's scans. Joy,(the patient), had excisional biopsy performed 3-3-11 by her oral surgeon. It revealed invasive mucosal melanoma 2.8mm with 8 mitotic figues and 7mm ulceration. On 4-22-11 she underwent infrastructure maxillectomy and full thickness skin graft. The path report revealed melanoma in situ in the left labial mucosal margin and and in the squamous cell mucosa and the right labial mucosa. She was tested for C-kit at that time, and consistent with axon 11 of that gene. She did 2 1/2 weeks of radiation, starting 5/29. Her followup scans were clear until Dec. 8th. At that time a they noticed development of the submandibular lymph node measuring 1.4cm and a number of pulmonary nodules. The fine needle biopsy revealed metastatic melanoma and just like that, we went to stage 4. Started dasatinib the following week and after the first scans in Jan. it seems to be working. Improvement in size of lung and lymph node. The doseage was reduced from 100mg to 70 after Joy became very ill on the higher dose. The scans next week, 4-18 and 4-19 will be the first after lowering the dose. Hoping and praying the meds are still attacking the cancer.

                                                                                  JerryfromFauq
                                                                                  Participant

                                                                                    We need to know more  info to better respond to your status.  Haass the melanoma went to the lymph nodes yet?  What stage was given iin the diagnosis?  This is a serious matter, but do not consider it a hopeless one.  Learn and fight.  Be vigilant, but not paranoid. 

                                                                                    (I was given up to 6 months to die in March 2007.)

                                                                                    Was mis-diagnosed for 3 1/2 years as a hemmorhoid, finally biopsied in May 2006 and diagnosed as anal Melanoma.  Welome to look at my profile.   Went to stage IV with innumerable lung tumors in Feb 2007.  Went on IL-2 immediately and was essentially stable thru Dec 2008.  Testing showed I had the C-kit Oncoprotein. Innumerable new tumors quickly developed in my lungs and the old tumors quadrupled in size and new tumors appeared on my neck and groin.                        Tumors were too dark to successfully run the c-kit DNA mutation test on  them.  Talked Oncologist team into starting Gleevec anyway (March 2009).  The first of the targeted drugs ever approved by the FDA.  Still not approved for Melanoma.  During 2009 Clinical trials were started for c-kit melanoma.  Have been essentially stable on the Gleevec for over three years now.  So far no new tumors have been identified.  A few have shrunk, a couple have disappeared.  There are differented targeted drugs along the lines of Gleevec being tested to see which works best  on each of the different C-kit DNA mutations.

                                                                                        Get tted for The C-kit oncoprotein first.  Any laab should be able to do this test.  The C-kit DNA mutatin tet is more involved and require a specialised lab.  If the first test fails to identify c-kit, then look for other options.  IL-2 has the best record for stopping melanoma for the l ongest time, but even IL-2 only has a 5% rate that approches a cure (10 year aand longer remission rate for stage IV patients.).  It also has a 15% rate of providing a patrial response to across the board melanoma cases.

                                                                                         I will glad to talk with you either here, in emails or telephonically.

                                                                                    JerryfromFauq
                                                                                    Participant

                                                                                      We need to know more  info to better respond to your status.  Haass the melanoma went to the lymph nodes yet?  What stage was given iin the diagnosis?  This is a serious matter, but do not consider it a hopeless one.  Learn and fight.  Be vigilant, but not paranoid. 

                                                                                      (I was given up to 6 months to die in March 2007.)

                                                                                      Was mis-diagnosed for 3 1/2 years as a hemmorhoid, finally biopsied in May 2006 and diagnosed as anal Melanoma.  Welome to look at my profile.   Went to stage IV with innumerable lung tumors in Feb 2007.  Went on IL-2 immediately and was essentially stable thru Dec 2008.  Testing showed I had the C-kit Oncoprotein. Innumerable new tumors quickly developed in my lungs and the old tumors quadrupled in size and new tumors appeared on my neck and groin.                        Tumors were too dark to successfully run the c-kit DNA mutation test on  them.  Talked Oncologist team into starting Gleevec anyway (March 2009).  The first of the targeted drugs ever approved by the FDA.  Still not approved for Melanoma.  During 2009 Clinical trials were started for c-kit melanoma.  Have been essentially stable on the Gleevec for over three years now.  So far no new tumors have been identified.  A few have shrunk, a couple have disappeared.  There are differented targeted drugs along the lines of Gleevec being tested to see which works best  on each of the different C-kit DNA mutations.

                                                                                          Get tted for The C-kit oncoprotein first.  Any laab should be able to do this test.  The C-kit DNA mutatin tet is more involved and require a specialised lab.  If the first test fails to identify c-kit, then look for other options.  IL-2 has the best record for stopping melanoma for the l ongest time, but even IL-2 only has a 5% rate that approches a cure (10 year aand longer remission rate for stage IV patients.).  It also has a 15% rate of providing a patrial response to across the board melanoma cases.

                                                                                           I will glad to talk with you either here, in emails or telephonically.

                                                                                      Angelica Camargo
                                                                                      Participant

                                                                                        Yes, my mom. It was amucosal melanoma in the nose. She had surgery, radiation and probably we will be doing Intraferon. Intraferon is giving to skin melanoma but this is the only other thing she can do. 

                                                                                         

                                                                                        I hope you are doing well!

                                                                                        Angelica Camargo
                                                                                        Participant

                                                                                          Yes, my mom. It was amucosal melanoma in the nose. She had surgery, radiation and probably we will be doing Intraferon. Intraferon is giving to skin melanoma but this is the only other thing she can do. 

                                                                                           

                                                                                          I hope you are doing well!

                                                                                          Angelica Camargo
                                                                                          Participant

                                                                                            Yes, my mom. It was amucosal melanoma in the nose. She had surgery, radiation and probably we will be doing Intraferon. Intraferon is giving to skin melanoma but this is the only other thing she can do. 

                                                                                             

                                                                                            I hope you are doing well!

                                                                                            barbielindsey
                                                                                            Participant

                                                                                              Hi, I am new to this site and I know this may sound bad, but I am glad to see there are other people with the same thing my mother has. She was diagnosed 8/2011 with mucosal melanoma. She woke up with a nose bleed in July of last year that lasted on & off for three weeks. When she went to the Dr they had found the tumor in her nose, since then the cancer has spread throughout her body infecting her neck, liver, lungs, left arm bones, right leg bones and now her stomach. They have just been treating her with chemo. She lives and sees the Dr's in the Sun City AZ area. They say they are some of the best Dr's there.

                                                                                              I am very thankful for all your postings and the kind of treatments everyone is going through. This gives me some questions to ask my mom's dr about her treatments. It seems as though the chemo they have her on, which I believe is Taxol seems to be slowing the cancer down.

                                                                                              We were told this type of cancer is a death sentence. They only gave her 6 months to a year to live. Does anyone know if there have been survivors of this Mucosal Melanoma? We could really use some encouraging stories now.

                                                                                              As I read some of the postings here I get chocked up. I am so sorry that any of you and your loved ones have to endure this cancer. Thank you for taking the time to post and share your stories.

                                                                                              Barbie

                                                                                               

                                                                                               

                                                                                                sjl
                                                                                                Participant

                                                                                                  I just stumbled upon this post.  My husband was diagnosed with mucosal melanoma of the nasal cavity in April of this year.  He had surgery twice and one lymph node was involved.  He has had no other treatments because they were trying to figure out what was up with a lung nodule and it's been found to be a second primary cancer which surgery would cure.  The plan was to have part of the lung removed, then do radiation and possibly a year of interferon.  It's all out the window now because he woke up last Sunday with a chain of lumps in the neck area where the lymph nodes had been removed.  The biopsy result is back and it's inoperable melanoma that has spread.  He will have another pet scan and see the melanoma specialist as soon as possible.  Now they are talking some type of chemo but the referring doctor has no idea what the melanoma specialist has in mind.  The doctor told me repeatedly that the delay in radiation has nothing to do with the spread.  This was my biggest fear – that it would spread waiting for treament to begin.  We have had a never ending round of doctor visits, tests, scans and biopsies since it all began, with each appointment adding to the dealy.

                                                                                                  I'm curious.  When did they say your mother had 6 months to a year to live?  Was it at the intial time of diagnosis or further along?  I'd like to hear form survivors of this as well.  Hope we get some.

                                                                                                  Also, what treatments has your mother had?  How did she handle them?

                                                                                                  Mymomsafighter
                                                                                                  Participant
                                                                                                    My mom is battling mucosal melanoma (dx 2/12)… We’ve been through biochemo and now on zelboraf. Never ever was life expectancy discussed. We know the diagnosis/prognosis is poor but fighting this illness for as long as possible is our goal! Treating at MD Anderson with an exceptional care team!
                                                                                                    Mymomsafighter
                                                                                                    Participant
                                                                                                      My mom is battling mucosal melanoma (dx 2/12)… We’ve been through biochemo and now on zelboraf. Never ever was life expectancy discussed. We know the diagnosis/prognosis is poor but fighting this illness for as long as possible is our goal! Treating at MD Anderson with an exceptional care team!
                                                                                                      Mymomsafighter
                                                                                                      Participant
                                                                                                        My mom is battling mucosal melanoma (dx 2/12)… We’ve been through biochemo and now on zelboraf. Never ever was life expectancy discussed. We know the diagnosis/prognosis is poor but fighting this illness for as long as possible is our goal! Treating at MD Anderson with an exceptional care team!
                                                                                                        Mymomsafighter
                                                                                                        Participant
                                                                                                          My mom is battling mucosal melanoma (dx 2/12)… We’ve been through biochemo and now on zelboraf. Never ever was life expectancy discussed. We know the diagnosis/prognosis is poor but fighting this illness for as long as possible is our goal! Treating at MD Anderson with an exceptional care team!
                                                                                                          Mymomsafighter
                                                                                                          Participant
                                                                                                            My mom is battling mucosal melanoma (dx 2/12)… We’ve been through biochemo and now on zelboraf. Never ever was life expectancy discussed. We know the diagnosis/prognosis is poor but fighting this illness for as long as possible is our goal! Treating at MD Anderson with an exceptional care team!
                                                                                                            Mymomsafighter
                                                                                                            Participant
                                                                                                              My mom is battling mucosal melanoma (dx 2/12)… We’ve been through biochemo and now on zelboraf. Never ever was life expectancy discussed. We know the diagnosis/prognosis is poor but fighting this illness for as long as possible is our goal! Treating at MD Anderson with an exceptional care team!
                                                                                                              JerryfromFauq
                                                                                                              Participant

                                                                                                                Generally the 2-6 months life expectancy for stage 4 melanoma was from the date of diagnosis as a stage IV patient.

                                                                                                                   That is what the general oncologist gave me in March 2007 when I was found to have entered stage IV of mucosal melanoma.  I got out of his practice and jumped into a Melanoma specialist at UVA with over 20 years expererence using IL-2.  (The only thing that stood much over a 1% chance of helping me fight my mucosal melanoma back in 2007.)  After a partial response to the IL-2 (20 months of being essentially stable), I went on Gleevec for my C-kit onco-protein mucosal melanoma. 

                                                                                                                    Still here, still fighting melanoma, still not NED, still living a fairly good life (now with 15 living grandchildren, and the younger ones want to know why I call # 16 a GREAT grandchild!). "Great" to be able to explain that wording to a 6 year old, that I was not supposed to live to see!

                                                                                                                   Get your husband tested for the c-kit oncoprotein and if positive, tested to see if he also has one of the c-kit DNA mutations in his tumors.  If c-kit positive there are at least 4 different targeted drugs being tested off label, (FDA approved for other c-kit cancers.)

                                                                                                                madeclaire
                                                                                                                Participant

                                                                                                                  Jerry, I'm encouraged that you tolerated the IL-2. I'm not sure yet if I'm eligible for any of the newer drugs for stage !V mucosal melanoma.  Do you credit this in part to the expertise of your oncologist?  I heard the side effects are very severe and I would need to be hospitalized to administer this, possibly even in the ICU since I have low blood pressure issues. I've been treated for 9 years by a general oncologist with a lot of experience with melanoma at Northwestern Hospital in Chicago.  My question is should I consider a melanoma center perhaps at the U of Chicago?  Although I am comfortable with my team, I'm afraid they may not be as up to date as someone dealing exclusively with melanoma.  any thoughts?  So glad to know your thriving so many years after stage !V, very encouraging, Madeline

                                                                                                                  JerryfromFauq
                                                                                                                  Participant

                                                                                                                    I definitely credit the experience and expertise and attention of Dr Weis with mine and DebbieVa's withstanding the IL-2 experience.  It is a rough experience and it is absolutely required that it be administered in an expert hospital setting. A ward with specially trained nurses  (Sometimes administered in an ICU) that will know what response to provide for each symptom experienced and will do so with extreme speed. The main reason that I L-2 has not been admoinistered muich m ore widely is lake of IL-2 traind Oncologists and their resulting fear of recommending what they do not know enough about.  The maximum target is to adm inister one bag of Interluekon every 8 hours 5 days and does i ndeed require a hospital setting to monitor and treat side-effects.  My Medical Melanoma Specialist Oncologist has worked with IL-2 since the early 1980's (IL-2 was only FDA approved in late 1990's)  He helped gain the approval.  He is personally involved with the administration of each bag in spite of being the head of the Medical Oncology Dept and a Deputy Director of the University Medical center.

                                                                                                                       The lack of hospital beds in Canada for melanoma is one reason that IL-2 is not used in Canada.  The low blood pressure that the administration of IL-2 generates may be a problem for you and will certainly have to be closely monitored.  They will withhold bags of IL-2 if your upper blood pressure drops below 90.  I and a few others learned that black licorice (tea, etc which tastes awful) helps hold ones BP up.

                                                                                                                        The blood pressure issue could be a factor in determining whether to go the Ipi or IL-2 path first.  Both can be be very toxic on people.  Some people find one to be worse than the other.  I have a friend that had a much worse side effects on Ipi than I had on IL-2.  Varies with each person.  At least the recovery time from eaach weeks ILK-2 treatment is shosrt.

                                                                                                                    JerryfromFauq
                                                                                                                    Participant

                                                                                                                      I definitely credit the experience and expertise and attention of Dr Weis with mine and DebbieVa's withstanding the IL-2 experience.  It is a rough experience and it is absolutely required that it be administered in an expert hospital setting. A ward with specially trained nurses  (Sometimes administered in an ICU) that will know what response to provide for each symptom experienced and will do so with extreme speed. The main reason that I L-2 has not been admoinistered muich m ore widely is lake of IL-2 traind Oncologists and their resulting fear of recommending what they do not know enough about.  The maximum target is to adm inister one bag of Interluekon every 8 hours 5 days and does i ndeed require a hospital setting to monitor and treat side-effects.  My Medical Melanoma Specialist Oncologist has worked with IL-2 since the early 1980's (IL-2 was only FDA approved in late 1990's)  He helped gain the approval.  He is personally involved with the administration of each bag in spite of being the head of the Medical Oncology Dept and a Deputy Director of the University Medical center.

                                                                                                                         The lack of hospital beds in Canada for melanoma is one reason that IL-2 is not used in Canada.  The low blood pressure that the administration of IL-2 generates may be a problem for you and will certainly have to be closely monitored.  They will withhold bags of IL-2 if your upper blood pressure drops below 90.  I and a few others learned that black licorice (tea, etc which tastes awful) helps hold ones BP up.

                                                                                                                          The blood pressure issue could be a factor in determining whether to go the Ipi or IL-2 path first.  Both can be be very toxic on people.  Some people find one to be worse than the other.  I have a friend that had a much worse side effects on Ipi than I had on IL-2.  Varies with each person.  At least the recovery time from eaach weeks ILK-2 treatment is shosrt.

                                                                                                                      JerryfromFauq
                                                                                                                      Participant

                                                                                                                        I definitely credit the experience and expertise and attention of Dr Weis with mine and DebbieVa's withstanding the IL-2 experience.  It is a rough experience and it is absolutely required that it be administered in an expert hospital setting. A ward with specially trained nurses  (Sometimes administered in an ICU) that will know what response to provide for each symptom experienced and will do so with extreme speed. The main reason that I L-2 has not been admoinistered muich m ore widely is lake of IL-2 traind Oncologists and their resulting fear of recommending what they do not know enough about.  The maximum target is to adm inister one bag of Interluekon every 8 hours 5 days and does i ndeed require a hospital setting to monitor and treat side-effects.  My Medical Melanoma Specialist Oncologist has worked with IL-2 since the early 1980's (IL-2 was only FDA approved in late 1990's)  He helped gain the approval.  He is personally involved with the administration of each bag in spite of being the head of the Medical Oncology Dept and a Deputy Director of the University Medical center.

                                                                                                                           The lack of hospital beds in Canada for melanoma is one reason that IL-2 is not used in Canada.  The low blood pressure that the administration of IL-2 generates may be a problem for you and will certainly have to be closely monitored.  They will withhold bags of IL-2 if your upper blood pressure drops below 90.  I and a few others learned that black licorice (tea, etc which tastes awful) helps hold ones BP up.

                                                                                                                            The blood pressure issue could be a factor in determining whether to go the Ipi or IL-2 path first.  Both can be be very toxic on people.  Some people find one to be worse than the other.  I have a friend that had a much worse side effects on Ipi than I had on IL-2.  Varies with each person.  At least the recovery time from eaach weeks ILK-2 treatment is shosrt.

                                                                                                                        madeclaire
                                                                                                                        Participant

                                                                                                                          Jerry, I'm encouraged that you tolerated the IL-2. I'm not sure yet if I'm eligible for any of the newer drugs for stage !V mucosal melanoma.  Do you credit this in part to the expertise of your oncologist?  I heard the side effects are very severe and I would need to be hospitalized to administer this, possibly even in the ICU since I have low blood pressure issues. I've been treated for 9 years by a general oncologist with a lot of experience with melanoma at Northwestern Hospital in Chicago.  My question is should I consider a melanoma center perhaps at the U of Chicago?  Although I am comfortable with my team, I'm afraid they may not be as up to date as someone dealing exclusively with melanoma.  any thoughts?  So glad to know your thriving so many years after stage !V, very encouraging, Madeline

                                                                                                                          madeclaire
                                                                                                                          Participant

                                                                                                                            Jerry, I'm encouraged that you tolerated the IL-2. I'm not sure yet if I'm eligible for any of the newer drugs for stage !V mucosal melanoma.  Do you credit this in part to the expertise of your oncologist?  I heard the side effects are very severe and I would need to be hospitalized to administer this, possibly even in the ICU since I have low blood pressure issues. I've been treated for 9 years by a general oncologist with a lot of experience with melanoma at Northwestern Hospital in Chicago.  My question is should I consider a melanoma center perhaps at the U of Chicago?  Although I am comfortable with my team, I'm afraid they may not be as up to date as someone dealing exclusively with melanoma.  any thoughts?  So glad to know your thriving so many years after stage !V, very encouraging, Madeline

                                                                                                                            JerryfromFauq
                                                                                                                            Participant

                                                                                                                              Generally the 2-6 months life expectancy for stage 4 melanoma was from the date of diagnosis as a stage IV patient.

                                                                                                                                 That is what the general oncologist gave me in March 2007 when I was found to have entered stage IV of mucosal melanoma.  I got out of his practice and jumped into a Melanoma specialist at UVA with over 20 years expererence using IL-2.  (The only thing that stood much over a 1% chance of helping me fight my mucosal melanoma back in 2007.)  After a partial response to the IL-2 (20 months of being essentially stable), I went on Gleevec for my C-kit onco-protein mucosal melanoma. 

                                                                                                                                  Still here, still fighting melanoma, still not NED, still living a fairly good life (now with 15 living grandchildren, and the younger ones want to know why I call # 16 a GREAT grandchild!). "Great" to be able to explain that wording to a 6 year old, that I was not supposed to live to see!

                                                                                                                                 Get your husband tested for the c-kit oncoprotein and if positive, tested to see if he also has one of the c-kit DNA mutations in his tumors.  If c-kit positive there are at least 4 different targeted drugs being tested off label, (FDA approved for other c-kit cancers.)

                                                                                                                              JerryfromFauq
                                                                                                                              Participant

                                                                                                                                Generally the 2-6 months life expectancy for stage 4 melanoma was from the date of diagnosis as a stage IV patient.

                                                                                                                                   That is what the general oncologist gave me in March 2007 when I was found to have entered stage IV of mucosal melanoma.  I got out of his practice and jumped into a Melanoma specialist at UVA with over 20 years expererence using IL-2.  (The only thing that stood much over a 1% chance of helping me fight my mucosal melanoma back in 2007.)  After a partial response to the IL-2 (20 months of being essentially stable), I went on Gleevec for my C-kit onco-protein mucosal melanoma. 

                                                                                                                                    Still here, still fighting melanoma, still not NED, still living a fairly good life (now with 15 living grandchildren, and the younger ones want to know why I call # 16 a GREAT grandchild!). "Great" to be able to explain that wording to a 6 year old, that I was not supposed to live to see!

                                                                                                                                   Get your husband tested for the c-kit oncoprotein and if positive, tested to see if he also has one of the c-kit DNA mutations in his tumors.  If c-kit positive there are at least 4 different targeted drugs being tested off label, (FDA approved for other c-kit cancers.)

                                                                                                                                sjl
                                                                                                                                Participant

                                                                                                                                  I just stumbled upon this post.  My husband was diagnosed with mucosal melanoma of the nasal cavity in April of this year.  He had surgery twice and one lymph node was involved.  He has had no other treatments because they were trying to figure out what was up with a lung nodule and it's been found to be a second primary cancer which surgery would cure.  The plan was to have part of the lung removed, then do radiation and possibly a year of interferon.  It's all out the window now because he woke up last Sunday with a chain of lumps in the neck area where the lymph nodes had been removed.  The biopsy result is back and it's inoperable melanoma that has spread.  He will have another pet scan and see the melanoma specialist as soon as possible.  Now they are talking some type of chemo but the referring doctor has no idea what the melanoma specialist has in mind.  The doctor told me repeatedly that the delay in radiation has nothing to do with the spread.  This was my biggest fear – that it would spread waiting for treament to begin.  We have had a never ending round of doctor visits, tests, scans and biopsies since it all began, with each appointment adding to the dealy.

                                                                                                                                  I'm curious.  When did they say your mother had 6 months to a year to live?  Was it at the intial time of diagnosis or further along?  I'd like to hear form survivors of this as well.  Hope we get some.

                                                                                                                                  Also, what treatments has your mother had?  How did she handle them?

                                                                                                                                  sjl
                                                                                                                                  Participant

                                                                                                                                    I just stumbled upon this post.  My husband was diagnosed with mucosal melanoma of the nasal cavity in April of this year.  He had surgery twice and one lymph node was involved.  He has had no other treatments because they were trying to figure out what was up with a lung nodule and it's been found to be a second primary cancer which surgery would cure.  The plan was to have part of the lung removed, then do radiation and possibly a year of interferon.  It's all out the window now because he woke up last Sunday with a chain of lumps in the neck area where the lymph nodes had been removed.  The biopsy result is back and it's inoperable melanoma that has spread.  He will have another pet scan and see the melanoma specialist as soon as possible.  Now they are talking some type of chemo but the referring doctor has no idea what the melanoma specialist has in mind.  The doctor told me repeatedly that the delay in radiation has nothing to do with the spread.  This was my biggest fear – that it would spread waiting for treament to begin.  We have had a never ending round of doctor visits, tests, scans and biopsies since it all began, with each appointment adding to the dealy.

                                                                                                                                    I'm curious.  When did they say your mother had 6 months to a year to live?  Was it at the intial time of diagnosis or further along?  I'd like to hear form survivors of this as well.  Hope we get some.

                                                                                                                                    Also, what treatments has your mother had?  How did she handle them?

                                                                                                                                  barbielindsey
                                                                                                                                  Participant

                                                                                                                                    Hi, I am new to this site and I know this may sound bad, but I am glad to see there are other people with the same thing my mother has. She was diagnosed 8/2011 with mucosal melanoma. She woke up with a nose bleed in July of last year that lasted on & off for three weeks. When she went to the Dr they had found the tumor in her nose, since then the cancer has spread throughout her body infecting her neck, liver, lungs, left arm bones, right leg bones and now her stomach. They have just been treating her with chemo. She lives and sees the Dr's in the Sun City AZ area. They say they are some of the best Dr's there.

                                                                                                                                    I am very thankful for all your postings and the kind of treatments everyone is going through. This gives me some questions to ask my mom's dr about her treatments. It seems as though the chemo they have her on, which I believe is Taxol seems to be slowing the cancer down.

                                                                                                                                    We were told this type of cancer is a death sentence. They only gave her 6 months to a year to live. Does anyone know if there have been survivors of this Mucosal Melanoma? We could really use some encouraging stories now.

                                                                                                                                    As I read some of the postings here I get chocked up. I am so sorry that any of you and your loved ones have to endure this cancer. Thank you for taking the time to post and share your stories.

                                                                                                                                    Barbie

                                                                                                                                     

                                                                                                                                     

                                                                                                                                    barbielindsey
                                                                                                                                    Participant

                                                                                                                                      Hi, I am new to this site and I know this may sound bad, but I am glad to see there are other people with the same thing my mother has. She was diagnosed 8/2011 with mucosal melanoma. She woke up with a nose bleed in July of last year that lasted on & off for three weeks. When she went to the Dr they had found the tumor in her nose, since then the cancer has spread throughout her body infecting her neck, liver, lungs, left arm bones, right leg bones and now her stomach. They have just been treating her with chemo. She lives and sees the Dr's in the Sun City AZ area. They say they are some of the best Dr's there.

                                                                                                                                      I am very thankful for all your postings and the kind of treatments everyone is going through. This gives me some questions to ask my mom's dr about her treatments. It seems as though the chemo they have her on, which I believe is Taxol seems to be slowing the cancer down.

                                                                                                                                      We were told this type of cancer is a death sentence. They only gave her 6 months to a year to live. Does anyone know if there have been survivors of this Mucosal Melanoma? We could really use some encouraging stories now.

                                                                                                                                      As I read some of the postings here I get chocked up. I am so sorry that any of you and your loved ones have to endure this cancer. Thank you for taking the time to post and share your stories.

                                                                                                                                      Barbie

                                                                                                                                       

                                                                                                                                       

                                                                                                                                      madeclaire
                                                                                                                                      Participant

                                                                                                                                        Hello everyone, I was originally diagnosed with mucosal melanoma of the nasal cavity in Octbober of 2003 when I was 51.  Otherwise physically active healthy female with 2 children. Treated with surgery ,  at the time I was uncomfortable with no treatment  so I joined a double blind vaccine study with GM-CSF.  All was well for 5 years at which time I had a recurrance at the original site.  Had a partial maxillextomy and waited another 3 years before another recurrance last October, further surgery followed by radiation.  Now my latest scans show residual disease in the orbital bones of my face and fatty pad under the cheek as well as lymph node involvement in the neck and several lesionson the liver.  This leaves me waiting for lab results to see if I'm eligible for treatment due to c-kit or braf mutations for which my general oncologist at a large cancer center says is unlikely (statistically based on original tumor location).  I'm trying to weigh my options which he offered which are basically Interleukin or Yervoy.  I've also sent out for a molecular analysis of the tumor at Caris Target Now lab.  Any advice as to whether I should look to a melanoma specialist or center.  I live in Chicago.  Also open to clinical trials and have been informed of a number of trials through a trial matching service for which I am preliminarily eligible.  So many difficult decisions to be made since treatment is so limited and seldom shows durable results.  I suspect combination drugs would work best,  but which ones are right for me……any thoughts

                                                                                                                                          Mymomsafighter
                                                                                                                                          Participant
                                                                                                                                            My mom was dx with mucosal of nasal/sinus and was both BRaF and cKit positive. She is being treated at MD Anderson. She started out doing biochemo and is now on zelboraf.
                                                                                                                                            madeclaire
                                                                                                                                            Participant

                                                                                                                                              This is the first time I ever heard of a patient that is BOTH C-Kit and B-RAF positive.  That is great for your mom.  I'm still waiting on test results to determine if I have either mutation.  My oncologist at Northwestern Memorial in Chicago told me it is unusual to find these mutations in mucosal melanoma of the nasal cavity.  I wish your mom well on this journey.  Please keep me/us posted on how she is doing.

                                                                                                                                              madeclaire
                                                                                                                                              Participant

                                                                                                                                                This is the first time I ever heard of a patient that is BOTH C-Kit and B-RAF positive.  That is great for your mom.  I'm still waiting on test results to determine if I have either mutation.  My oncologist at Northwestern Memorial in Chicago told me it is unusual to find these mutations in mucosal melanoma of the nasal cavity.  I wish your mom well on this journey.  Please keep me/us posted on how she is doing.

                                                                                                                                                madeclaire
                                                                                                                                                Participant

                                                                                                                                                  This is the first time I ever heard of a patient that is BOTH C-Kit and B-RAF positive.  That is great for your mom.  I'm still waiting on test results to determine if I have either mutation.  My oncologist at Northwestern Memorial in Chicago told me it is unusual to find these mutations in mucosal melanoma of the nasal cavity.  I wish your mom well on this journey.  Please keep me/us posted on how she is doing.

                                                                                                                                                  JerryfromFauq
                                                                                                                                                  Participant

                                                                                                                                                    Would love to see that oncopro tein/DNA mutation lab report. Everythin I have been abe to find ANYWHERE says that no melanoma tumor has ever been found with both c-kit mutations and BRAF mutations.  Any chance that they say they found "wild type" BRAF WHICH IS NORMAL IN THE BODY?

                                                                                                                                                    What does wild-type allele mean? – Wild type (or wildtype abbreviated wt) refers to the phenotype of the typical form of a species as it occurs in nature. Originally, the wild type was conceptualized as a product of the standard, "normal" allele at a locus, in contrast to that produced by a non-standard, "mutant" allele. It is now appreciated that most or all gene loci exist in a variety of allelic forms, which vary in frequency throughout the geographic range of a species, and that a uniform wild type does not exist. In general, however, the most prevalent allele[clarification needed] – e.g., the one with the highest gene frequency – is the one deemed as wild type.[1]  http://en.wikipedia.org/wiki/Wild_type

                                                                                                                                                    http://www.plosone.org/article/info%3Adoi%2F10.1371%2Fjournal.pone.0018257           shows c-kit and BRAF mutations to be in seperate sinaling lines for mutation.

                                                                                                                                                    http://www.ncbi.nlm.nih.gov/pubmed/17372901

                                                                                                                                                    JerryfromFauq
                                                                                                                                                    Participant

                                                                                                                                                      Are the continuous removals metastises, are or they new primaries?  People with multiply primaries statistcally have a higher survival rate!

                                                                                                                                                      JerryfromFauq
                                                                                                                                                      Participant

                                                                                                                                                        Are the continuous removals metastises, are or they new primaries?  People with multiply primaries statistcally have a higher survival rate!

                                                                                                                                                        JerryfromFauq
                                                                                                                                                        Participant

                                                                                                                                                          Would love to see that oncopro tein/DNA mutation lab report. Everythin I have been abe to find ANYWHERE says that no melanoma tumor has ever been found with both c-kit mutations and BRAF mutations.  Any chance that they say they found "wild type" BRAF WHICH IS NORMAL IN THE BODY?

                                                                                                                                                          What does wild-type allele mean? – Wild type (or wildtype abbreviated wt) refers to the phenotype of the typical form of a species as it occurs in nature. Originally, the wild type was conceptualized as a product of the standard, "normal" allele at a locus, in contrast to that produced by a non-standard, "mutant" allele. It is now appreciated that most or all gene loci exist in a variety of allelic forms, which vary in frequency throughout the geographic range of a species, and that a uniform wild type does not exist. In general, however, the most prevalent allele[clarification needed] – e.g., the one with the highest gene frequency – is the one deemed as wild type.[1]  http://en.wikipedia.org/wiki/Wild_type

                                                                                                                                                          http://www.plosone.org/article/info%3Adoi%2F10.1371%2Fjournal.pone.0018257           shows c-kit and BRAF mutations to be in seperate sinaling lines for mutation.

                                                                                                                                                          http://www.ncbi.nlm.nih.gov/pubmed/17372901

                                                                                                                                                          JerryfromFauq
                                                                                                                                                          Participant

                                                                                                                                                            Would love to see that oncopro tein/DNA mutation lab report. Everythin I have been abe to find ANYWHERE says that no melanoma tumor has ever been found with both c-kit mutations and BRAF mutations.  Any chance that they say they found "wild type" BRAF WHICH IS NORMAL IN THE BODY?

                                                                                                                                                            What does wild-type allele mean? – Wild type (or wildtype abbreviated wt) refers to the phenotype of the typical form of a species as it occurs in nature. Originally, the wild type was conceptualized as a product of the standard, "normal" allele at a locus, in contrast to that produced by a non-standard, "mutant" allele. It is now appreciated that most or all gene loci exist in a variety of allelic forms, which vary in frequency throughout the geographic range of a species, and that a uniform wild type does not exist. In general, however, the most prevalent allele[clarification needed] – e.g., the one with the highest gene frequency – is the one deemed as wild type.[1]  http://en.wikipedia.org/wiki/Wild_type

                                                                                                                                                            http://www.plosone.org/article/info%3Adoi%2F10.1371%2Fjournal.pone.0018257           shows c-kit and BRAF mutations to be in seperate sinaling lines for mutation.

                                                                                                                                                            http://www.ncbi.nlm.nih.gov/pubmed/17372901

                                                                                                                                                            Mymomsafighter
                                                                                                                                                            Participant
                                                                                                                                                              My mom was dx with mucosal of nasal/sinus and was both BRaF and cKit positive. She is being treated at MD Anderson. She started out doing biochemo and is now on zelboraf.
                                                                                                                                                              Mymomsafighter
                                                                                                                                                              Participant
                                                                                                                                                                My mom was dx with mucosal of nasal/sinus and was both BRaF and cKit positive. She is being treated at MD Anderson. She started out doing biochemo and is now on zelboraf.
                                                                                                                                                                wifeof
                                                                                                                                                                Participant

                                                                                                                                                                  Hello everyone, I am new to this site.  I really appreciate the stories and comments, this is such a shock adn its comforting to connect.  My husband was diagnosed with stage 4 mucosal melanoma (mets in numerous parts of his bones) in November 2012.  His tumor is negative for braf and ckit.   He is considering Interleukin or Yervoy although not sure either are worth the pain and suffering.   If the treatment takes 6 months and extends your life for 6 months, but you were in the hospital most of the time  – not clear he wants to do that.   His primary oncologist is recommending intensive Interleukin in Riverside CA.  Another melanoma specialist we consulted recommends Yervoy in SF.   My husband would rather get treatment close to home and continue to work, be close to family and friends.  I'd appreciate any experiences re these treatments options, and any data (I know its scarce) on effectiveness of the treatments, especially considering the time in the hospital as non-good time.  Thanks

                                                                                                                                                                  POW
                                                                                                                                                                  Participant

                                                                                                                                                                    I understand and agree with your husband's concern about the quality of life issues. As you say, what good is an extra 6 months of life if you spend most of it miserable and/or hospitalized? However, the side effects of cancer treatments are so variable that there is no way of predicting what will happen to your husband. Some people are devestated by the side effects of Zelboraf, for example, while my brother has had no problem with it. I have heard similar stories about Yervoy– some people are miserable and some not bothered too much. 

                                                                                                                                                                    I suggest that your husband go ahead with treatment and if he finds the side effects untenable, he can always stop the treatment. I don't understand why he would have to travel to SF to get Yervoy; it's FDA approved so it can be administered by any doctor. Of course, you would want an experienced oncologist to do it, but do you have to go all the way to SF to find an experienced oncologist? Maybe you do.   

                                                                                                                                                                    wifeof
                                                                                                                                                                    Participant

                                                                                                                                                                      Thank you for your comments, I really appreciate it. 

                                                                                                                                                                      We live in the Bay Area and have Kaiser coverage.  Kaiser wants to treat him in Riverside, which would be difficult in terms of maintaining jobs (we are both in our 50s and working), family and friend connections.  He would prefer to be treated in SF area so he can work and play with friends when he feels well enough. If one of the treatments was clearly superior he might go for that, but otherwise being close to home is far better.  He has an apt with his Kaiser oncologist tomorrow and we'll discuss.  Sounds like we should ask Kaiser for Yervoy here. 

                                                                                                                                                                      If Kaiser does not offer Yervoy,  anyone have experience whether Kaiser will acept quality of life from being close to home as a factor in selecting treatment and maybe approving out-of-system costs? (Yervoy is ~ $150,000 from my understanding).

                                                                                                                                                                      He is very concerned about the mental effects from chemo that he has heard about.  I'd appreciate any thoughts on extent of side effects of Yervoy vs IL2.

                                                                                                                                                                      Thanks so much – you are helping me clarify his options.

                                                                                                                                                                      kylez
                                                                                                                                                                      Participant

                                                                                                                                                                        I don't know if you have a health insurance open season (some are closing in a day or two?) and different insurer choices, but I switched away from Kaiser at the end of 2010 primarily because the melanoma specialist for Kaiser (Dr. Gailaini) is in Riverside and I wanted a melanoma specialist (and treatments) locally (SF area for me too).

                                                                                                                                                                        Dr. Gailani and his staff were great. And it does work better if you're the one talking directly to the melanoma-specializing oncologist (Dr. Gailani at Riverside.) so you can ask questions and have a real dialog. I did 4 cycles of IL-2 (Kaiser paid for my travel to/from Riverside for each of the 4 trips). Then I had my first neurosurgery at Kaiser's neurosurgery center in Redwood City. And my first radiation at Kaiser's new Cyberknife facility in South SF (all in 2010). Then in health insurance open season at the end of 2010 I switched insurers so I could get treated locally now (all those treatments are available in SF).

                                                                                                                                                                        One thing to consider is that 400 miles (distance from here to Riverside) may not be that much further than the closest cancer center for folks in some parts of the country. 

                                                                                                                                                                        Good luck tomorrow and with your choices.

                                                                                                                                                                        wifeof
                                                                                                                                                                        Participant

                                                                                                                                                                          We met with Kaiser and they agreed to Ipi treatment close to home, Oakland, so that is good.  I think he will start after we return from a long planned big family vacation in a few weeks, assuming he decides to go forward with it.  I was encouraged by teh perspective that he can start it and if its too devastating he can quit. 

                                                                                                                                                                          We have heard about a trial with higher doses of Ipi and GM-CSF.  Anyone know about any responses/reactions to that combo?  Thanks all.  I will post this is another stream that also addresses mucosal melanoma, not sure best approach with these diverging talks.   Thanks again, I really appreciate hearing from others.

                                                                                                                                                                          kylez
                                                                                                                                                                          Participant

                                                                                                                                                                            I believe Gene_S here is on the IPI + GM-CSF trial. 

                                                                                                                                                                            Congrats on getting the treatment for your husband that you wanted, close to home to boot. Keep us posted how it goes with IPI at Kaiser Oakland. 

                                                                                                                                                                            Dr. Daud at UCSF gave me my first IPI cycle and read me the riot act about letting him know IMMEDIATELY if any symptoms of any kind came up, most especially diarrhea. He did that because the quicker the intervention can be if there are severe immune reactions, the more likely it can be controlled quickly.  

                                                                                                                                                                            – Kyle

                                                                                                                                                                            kylez
                                                                                                                                                                            Participant

                                                                                                                                                                              I believe Gene_S here is on the IPI + GM-CSF trial. 

                                                                                                                                                                              Congrats on getting the treatment for your husband that you wanted, close to home to boot. Keep us posted how it goes with IPI at Kaiser Oakland. 

                                                                                                                                                                              Dr. Daud at UCSF gave me my first IPI cycle and read me the riot act about letting him know IMMEDIATELY if any symptoms of any kind came up, most especially diarrhea. He did that because the quicker the intervention can be if there are severe immune reactions, the more likely it can be controlled quickly.  

                                                                                                                                                                              – Kyle

                                                                                                                                                                              kylez
                                                                                                                                                                              Participant

                                                                                                                                                                                I believe Gene_S here is on the IPI + GM-CSF trial. 

                                                                                                                                                                                Congrats on getting the treatment for your husband that you wanted, close to home to boot. Keep us posted how it goes with IPI at Kaiser Oakland. 

                                                                                                                                                                                Dr. Daud at UCSF gave me my first IPI cycle and read me the riot act about letting him know IMMEDIATELY if any symptoms of any kind came up, most especially diarrhea. He did that because the quicker the intervention can be if there are severe immune reactions, the more likely it can be controlled quickly.  

                                                                                                                                                                                – Kyle

                                                                                                                                                                                wifeof
                                                                                                                                                                                Participant

                                                                                                                                                                                  We met with Kaiser and they agreed to Ipi treatment close to home, Oakland, so that is good.  I think he will start after we return from a long planned big family vacation in a few weeks, assuming he decides to go forward with it.  I was encouraged by teh perspective that he can start it and if its too devastating he can quit. 

                                                                                                                                                                                  We have heard about a trial with higher doses of Ipi and GM-CSF.  Anyone know about any responses/reactions to that combo?  Thanks all.  I will post this is another stream that also addresses mucosal melanoma, not sure best approach with these diverging talks.   Thanks again, I really appreciate hearing from others.

                                                                                                                                                                                  wifeof
                                                                                                                                                                                  Participant

                                                                                                                                                                                    We met with Kaiser and they agreed to Ipi treatment close to home, Oakland, so that is good.  I think he will start after we return from a long planned big family vacation in a few weeks, assuming he decides to go forward with it.  I was encouraged by teh perspective that he can start it and if its too devastating he can quit. 

                                                                                                                                                                                    We have heard about a trial with higher doses of Ipi and GM-CSF.  Anyone know about any responses/reactions to that combo?  Thanks all.  I will post this is another stream that also addresses mucosal melanoma, not sure best approach with these diverging talks.   Thanks again, I really appreciate hearing from others.

                                                                                                                                                                                    kylez
                                                                                                                                                                                    Participant

                                                                                                                                                                                      I don't know if you have a health insurance open season (some are closing in a day or two?) and different insurer choices, but I switched away from Kaiser at the end of 2010 primarily because the melanoma specialist for Kaiser (Dr. Gailaini) is in Riverside and I wanted a melanoma specialist (and treatments) locally (SF area for me too).

                                                                                                                                                                                      Dr. Gailani and his staff were great. And it does work better if you're the one talking directly to the melanoma-specializing oncologist (Dr. Gailani at Riverside.) so you can ask questions and have a real dialog. I did 4 cycles of IL-2 (Kaiser paid for my travel to/from Riverside for each of the 4 trips). Then I had my first neurosurgery at Kaiser's neurosurgery center in Redwood City. And my first radiation at Kaiser's new Cyberknife facility in South SF (all in 2010). Then in health insurance open season at the end of 2010 I switched insurers so I could get treated locally now (all those treatments are available in SF).

                                                                                                                                                                                      One thing to consider is that 400 miles (distance from here to Riverside) may not be that much further than the closest cancer center for folks in some parts of the country. 

                                                                                                                                                                                      Good luck tomorrow and with your choices.

                                                                                                                                                                                      kylez
                                                                                                                                                                                      Participant

                                                                                                                                                                                        I don't know if you have a health insurance open season (some are closing in a day or two?) and different insurer choices, but I switched away from Kaiser at the end of 2010 primarily because the melanoma specialist for Kaiser (Dr. Gailaini) is in Riverside and I wanted a melanoma specialist (and treatments) locally (SF area for me too).

                                                                                                                                                                                        Dr. Gailani and his staff were great. And it does work better if you're the one talking directly to the melanoma-specializing oncologist (Dr. Gailani at Riverside.) so you can ask questions and have a real dialog. I did 4 cycles of IL-2 (Kaiser paid for my travel to/from Riverside for each of the 4 trips). Then I had my first neurosurgery at Kaiser's neurosurgery center in Redwood City. And my first radiation at Kaiser's new Cyberknife facility in South SF (all in 2010). Then in health insurance open season at the end of 2010 I switched insurers so I could get treated locally now (all those treatments are available in SF).

                                                                                                                                                                                        One thing to consider is that 400 miles (distance from here to Riverside) may not be that much further than the closest cancer center for folks in some parts of the country. 

                                                                                                                                                                                        Good luck tomorrow and with your choices.

                                                                                                                                                                                        wifeof
                                                                                                                                                                                        Participant

                                                                                                                                                                                          Thank you for your comments, I really appreciate it. 

                                                                                                                                                                                          We live in the Bay Area and have Kaiser coverage.  Kaiser wants to treat him in Riverside, which would be difficult in terms of maintaining jobs (we are both in our 50s and working), family and friend connections.  He would prefer to be treated in SF area so he can work and play with friends when he feels well enough. If one of the treatments was clearly superior he might go for that, but otherwise being close to home is far better.  He has an apt with his Kaiser oncologist tomorrow and we'll discuss.  Sounds like we should ask Kaiser for Yervoy here. 

                                                                                                                                                                                          If Kaiser does not offer Yervoy,  anyone have experience whether Kaiser will acept quality of life from being close to home as a factor in selecting treatment and maybe approving out-of-system costs? (Yervoy is ~ $150,000 from my understanding).

                                                                                                                                                                                          He is very concerned about the mental effects from chemo that he has heard about.  I'd appreciate any thoughts on extent of side effects of Yervoy vs IL2.

                                                                                                                                                                                          Thanks so much – you are helping me clarify his options.

                                                                                                                                                                                          wifeof
                                                                                                                                                                                          Participant

                                                                                                                                                                                            Thank you for your comments, I really appreciate it. 

                                                                                                                                                                                            We live in the Bay Area and have Kaiser coverage.  Kaiser wants to treat him in Riverside, which would be difficult in terms of maintaining jobs (we are both in our 50s and working), family and friend connections.  He would prefer to be treated in SF area so he can work and play with friends when he feels well enough. If one of the treatments was clearly superior he might go for that, but otherwise being close to home is far better.  He has an apt with his Kaiser oncologist tomorrow and we'll discuss.  Sounds like we should ask Kaiser for Yervoy here. 

                                                                                                                                                                                            If Kaiser does not offer Yervoy,  anyone have experience whether Kaiser will acept quality of life from being close to home as a factor in selecting treatment and maybe approving out-of-system costs? (Yervoy is ~ $150,000 from my understanding).

                                                                                                                                                                                            He is very concerned about the mental effects from chemo that he has heard about.  I'd appreciate any thoughts on extent of side effects of Yervoy vs IL2.

                                                                                                                                                                                            Thanks so much – you are helping me clarify his options.

                                                                                                                                                                                            POW
                                                                                                                                                                                            Participant

                                                                                                                                                                                              I understand and agree with your husband's concern about the quality of life issues. As you say, what good is an extra 6 months of life if you spend most of it miserable and/or hospitalized? However, the side effects of cancer treatments are so variable that there is no way of predicting what will happen to your husband. Some people are devestated by the side effects of Zelboraf, for example, while my brother has had no problem with it. I have heard similar stories about Yervoy– some people are miserable and some not bothered too much. 

                                                                                                                                                                                              I suggest that your husband go ahead with treatment and if he finds the side effects untenable, he can always stop the treatment. I don't understand why he would have to travel to SF to get Yervoy; it's FDA approved so it can be administered by any doctor. Of course, you would want an experienced oncologist to do it, but do you have to go all the way to SF to find an experienced oncologist? Maybe you do.   

                                                                                                                                                                                              POW
                                                                                                                                                                                              Participant

                                                                                                                                                                                                I understand and agree with your husband's concern about the quality of life issues. As you say, what good is an extra 6 months of life if you spend most of it miserable and/or hospitalized? However, the side effects of cancer treatments are so variable that there is no way of predicting what will happen to your husband. Some people are devestated by the side effects of Zelboraf, for example, while my brother has had no problem with it. I have heard similar stories about Yervoy– some people are miserable and some not bothered too much. 

                                                                                                                                                                                                I suggest that your husband go ahead with treatment and if he finds the side effects untenable, he can always stop the treatment. I don't understand why he would have to travel to SF to get Yervoy; it's FDA approved so it can be administered by any doctor. Of course, you would want an experienced oncologist to do it, but do you have to go all the way to SF to find an experienced oncologist? Maybe you do.   

                                                                                                                                                                                                lrkg1234
                                                                                                                                                                                                Participant

                                                                                                                                                                                                  Hi,

                                                                                                                                                                                                   

                                                                                                                                                                                                  My husband Scott has mucosal, stage IV, diagnosed in August of this year.  He is undergoing his second round of interleuken as we speak.  Luckily he is getting the procedure done 20 minutes from our home.

                                                                                                                                                                                                  The first round was not nearly as bad as we had thought.  It's not easy, and it's not a guarantee by any means.  We felt it was certainly worth a shot since it has the best long term success.  I wouldn't rule Interleuken out if your husband is in good health and can handle it.  The side effects are not long lasting, just during the treatment for 5 days and then about 4 days afterwards. 

                                                                                                                                                                                                  Best of Luck, Lisa

                                                                                                                                                                                                  lrkg1234
                                                                                                                                                                                                  Participant

                                                                                                                                                                                                    Hi,

                                                                                                                                                                                                     

                                                                                                                                                                                                    My husband Scott has mucosal, stage IV, diagnosed in August of this year.  He is undergoing his second round of interleuken as we speak.  Luckily he is getting the procedure done 20 minutes from our home.

                                                                                                                                                                                                    The first round was not nearly as bad as we had thought.  It's not easy, and it's not a guarantee by any means.  We felt it was certainly worth a shot since it has the best long term success.  I wouldn't rule Interleuken out if your husband is in good health and can handle it.  The side effects are not long lasting, just during the treatment for 5 days and then about 4 days afterwards. 

                                                                                                                                                                                                    Best of Luck, Lisa

                                                                                                                                                                                                    lrkg1234
                                                                                                                                                                                                    Participant

                                                                                                                                                                                                      Hi,

                                                                                                                                                                                                       

                                                                                                                                                                                                      My husband Scott has mucosal, stage IV, diagnosed in August of this year.  He is undergoing his second round of interleuken as we speak.  Luckily he is getting the procedure done 20 minutes from our home.

                                                                                                                                                                                                      The first round was not nearly as bad as we had thought.  It's not easy, and it's not a guarantee by any means.  We felt it was certainly worth a shot since it has the best long term success.  I wouldn't rule Interleuken out if your husband is in good health and can handle it.  The side effects are not long lasting, just during the treatment for 5 days and then about 4 days afterwards. 

                                                                                                                                                                                                      Best of Luck, Lisa

                                                                                                                                                                                                      wifeof
                                                                                                                                                                                                      Participant

                                                                                                                                                                                                        Hello everyone, I am new to this site.  I really appreciate the stories and comments, this is such a shock adn its comforting to connect.  My husband was diagnosed with stage 4 mucosal melanoma (mets in numerous parts of his bones) in November 2012.  His tumor is negative for braf and ckit.   He is considering Interleukin or Yervoy although not sure either are worth the pain and suffering.   If the treatment takes 6 months and extends your life for 6 months, but you were in the hospital most of the time  – not clear he wants to do that.   His primary oncologist is recommending intensive Interleukin in Riverside CA.  Another melanoma specialist we consulted recommends Yervoy in SF.   My husband would rather get treatment close to home and continue to work, be close to family and friends.  I'd appreciate any experiences re these treatments options, and any data (I know its scarce) on effectiveness of the treatments, especially considering the time in the hospital as non-good time.  Thanks

                                                                                                                                                                                                        wifeof
                                                                                                                                                                                                        Participant

                                                                                                                                                                                                          Hello everyone, I am new to this site.  I really appreciate the stories and comments, this is such a shock adn its comforting to connect.  My husband was diagnosed with stage 4 mucosal melanoma (mets in numerous parts of his bones) in November 2012.  His tumor is negative for braf and ckit.   He is considering Interleukin or Yervoy although not sure either are worth the pain and suffering.   If the treatment takes 6 months and extends your life for 6 months, but you were in the hospital most of the time  – not clear he wants to do that.   His primary oncologist is recommending intensive Interleukin in Riverside CA.  Another melanoma specialist we consulted recommends Yervoy in SF.   My husband would rather get treatment close to home and continue to work, be close to family and friends.  I'd appreciate any experiences re these treatments options, and any data (I know its scarce) on effectiveness of the treatments, especially considering the time in the hospital as non-good time.  Thanks

                                                                                                                                                                                                        madeclaire
                                                                                                                                                                                                        Participant

                                                                                                                                                                                                          Hello everyone, I was originally diagnosed with mucosal melanoma of the nasal cavity in Octbober of 2003 when I was 51.  Otherwise physically active healthy female with 2 children. Treated with surgery ,  at the time I was uncomfortable with no treatment  so I joined a double blind vaccine study with GM-CSF.  All was well for 5 years at which time I had a recurrance at the original site.  Had a partial maxillextomy and waited another 3 years before another recurrance last October, further surgery followed by radiation.  Now my latest scans show residual disease in the orbital bones of my face and fatty pad under the cheek as well as lymph node involvement in the neck and several lesionson the liver.  This leaves me waiting for lab results to see if I'm eligible for treatment due to c-kit or braf mutations for which my general oncologist at a large cancer center says is unlikely (statistically based on original tumor location).  I'm trying to weigh my options which he offered which are basically Interleukin or Yervoy.  I've also sent out for a molecular analysis of the tumor at Caris Target Now lab.  Any advice as to whether I should look to a melanoma specialist or center.  I live in Chicago.  Also open to clinical trials and have been informed of a number of trials through a trial matching service for which I am preliminarily eligible.  So many difficult decisions to be made since treatment is so limited and seldom shows durable results.  I suspect combination drugs would work best,  but which ones are right for me……any thoughts

                                                                                                                                                                                                          madeclaire
                                                                                                                                                                                                          Participant

                                                                                                                                                                                                            Hello everyone, I was originally diagnosed with mucosal melanoma of the nasal cavity in Octbober of 2003 when I was 51.  Otherwise physically active healthy female with 2 children. Treated with surgery ,  at the time I was uncomfortable with no treatment  so I joined a double blind vaccine study with GM-CSF.  All was well for 5 years at which time I had a recurrance at the original site.  Had a partial maxillextomy and waited another 3 years before another recurrance last October, further surgery followed by radiation.  Now my latest scans show residual disease in the orbital bones of my face and fatty pad under the cheek as well as lymph node involvement in the neck and several lesionson the liver.  This leaves me waiting for lab results to see if I'm eligible for treatment due to c-kit or braf mutations for which my general oncologist at a large cancer center says is unlikely (statistically based on original tumor location).  I'm trying to weigh my options which he offered which are basically Interleukin or Yervoy.  I've also sent out for a molecular analysis of the tumor at Caris Target Now lab.  Any advice as to whether I should look to a melanoma specialist or center.  I live in Chicago.  Also open to clinical trials and have been informed of a number of trials through a trial matching service for which I am preliminarily eligible.  So many difficult decisions to be made since treatment is so limited and seldom shows durable results.  I suspect combination drugs would work best,  but which ones are right for me……any thoughts

                                                                                                                                                                                                            technogrannie8
                                                                                                                                                                                                            Participant

                                                                                                                                                                                                              Another newbie.  Had surgery to remove uvula because of growth on it.  Path report said mucosal melanoma.  Headed to M. D Anderson next week for evaluation and recommendations.  Have had no scans, etc. so don't know if and how far it has spread.  Been doing lots of reading.  Have put myself on a anti-cancer healing diet of mostly blenderized fruit, greens, veggie, and protein powder.  Also taking some of the supplements I see recommended.  Great disappointment in that I have been interested in natural health practices for some time and have been on a fairly good diet and some supplents for years.  Evidently did not protect me against this.  However, I have chosen my motto for this chapter of my life to be:

                                                                                                                                                                                                              I am here:

                                                                                                                                                                                                              1)By God's appointment

                                                                                                                                                                                                              2)In His keeping

                                                                                                                                                                                                              3)Under His training

                                                                                                                                                                                                              4)For His time

                                                                                                                                                                                                                    And For His Glory

                                                                                                                                                                                                               

                                                                                                                                                                                                              The picture from what I read is bleak, but I start down this road with confidence that He will lead and guide each step of the way and I trust Him to give me wisdom and strength for decisions I will have to make.

                                                                                                                                                                                                              I am glad to have found this forum and look forward to getting lots of good information.

                                                                                                                                                                                                              technogrannie8
                                                                                                                                                                                                              Participant

                                                                                                                                                                                                                Another newbie.  Had surgery to remove uvula because of growth on it.  Path report said mucosal melanoma.  Headed to M. D Anderson next week for evaluation and recommendations.  Have had no scans, etc. so don't know if and how far it has spread.  Been doing lots of reading.  Have put myself on a anti-cancer healing diet of mostly blenderized fruit, greens, veggie, and protein powder.  Also taking some of the supplements I see recommended.  Great disappointment in that I have been interested in natural health practices for some time and have been on a fairly good diet and some supplents for years.  Evidently did not protect me against this.  However, I have chosen my motto for this chapter of my life to be:

                                                                                                                                                                                                                I am here:

                                                                                                                                                                                                                1)By God's appointment

                                                                                                                                                                                                                2)In His keeping

                                                                                                                                                                                                                3)Under His training

                                                                                                                                                                                                                4)For His time

                                                                                                                                                                                                                      And For His Glory

                                                                                                                                                                                                                 

                                                                                                                                                                                                                The picture from what I read is bleak, but I start down this road with confidence that He will lead and guide each step of the way and I trust Him to give me wisdom and strength for decisions I will have to make.

                                                                                                                                                                                                                I am glad to have found this forum and look forward to getting lots of good information.

                                                                                                                                                                                                                technogrannie8
                                                                                                                                                                                                                Participant

                                                                                                                                                                                                                  Another newbie.  Had surgery to remove uvula because of growth on it.  Path report said mucosal melanoma.  Headed to M. D Anderson next week for evaluation and recommendations.  Have had no scans, etc. so don't know if and how far it has spread.  Been doing lots of reading.  Have put myself on a anti-cancer healing diet of mostly blenderized fruit, greens, veggie, and protein powder.  Also taking some of the supplements I see recommended.  Great disappointment in that I have been interested in natural health practices for some time and have been on a fairly good diet and some supplents for years.  Evidently did not protect me against this.  However, I have chosen my motto for this chapter of my life to be:

                                                                                                                                                                                                                  I am here:

                                                                                                                                                                                                                  1)By God's appointment

                                                                                                                                                                                                                  2)In His keeping

                                                                                                                                                                                                                  3)Under His training

                                                                                                                                                                                                                  4)For His time

                                                                                                                                                                                                                        And For His Glory

                                                                                                                                                                                                                   

                                                                                                                                                                                                                  The picture from what I read is bleak, but I start down this road with confidence that He will lead and guide each step of the way and I trust Him to give me wisdom and strength for decisions I will have to make.

                                                                                                                                                                                                                  I am glad to have found this forum and look forward to getting lots of good information.

                                                                                                                                                                                                                  technogrannie8
                                                                                                                                                                                                                  Participant

                                                                                                                                                                                                                    Will see Dr. Jeffery Myers tomorrow for my first apt.  Traveling today to Houston.  The fact that you are still here is encouragement.  Thanks for responding.  I'll post more when I know more.

                                                                                                                                                                                                                    casagrayson
                                                                                                                                                                                                                    Participant

                                                                                                                                                                                                                      Has anyone ever heard of metastatic melanoma presenting as mucosal?  In other words, can you start out with cutaneous melanoma and then have it metastisize to a mucosal tissue?  

                                                                                                                                                                                                                      casagrayson
                                                                                                                                                                                                                      Participant

                                                                                                                                                                                                                        Has anyone ever heard of metastatic melanoma presenting as mucosal?  In other words, can you start out with cutaneous melanoma and then have it metastisize to a mucosal tissue?  

                                                                                                                                                                                                                        casagrayson
                                                                                                                                                                                                                        Participant

                                                                                                                                                                                                                          Has anyone ever heard of metastatic melanoma presenting as mucosal?  In other words, can you start out with cutaneous melanoma and then have it metastisize to a mucosal tissue?  

                                                                                                                                                                                                                          JerryfromFauq
                                                                                                                                                                                                                          Participant

                                                                                                                                                                                                                            I would see no reason this couldn't happen.  Some Head and neck as well as acral lentigamous melanomas can have the c-kit onco-protein & DNA mutations that mucosal melanoma can have.  If melanoma gets into the blood system, it can go anyehere in the body.

                                                                                                                                                                                                                            JerryfromFauq
                                                                                                                                                                                                                            Participant

                                                                                                                                                                                                                              Are the continuous removals metastises, are or they new primaries?  People with multiply primaries statistcally have a higher survival rate!

                                                                                                                                                                                                                              casagrayson
                                                                                                                                                                                                                              Participant

                                                                                                                                                                                                                                So far, everything has been new primaries.  I'm just concerned because my husband is now having rectal bleeding.  He does have a history of hemorroids but had surgery several years ago an he has not had any problems since.  He is having no pain, but the bleeding is heavier than it ever was.  I wish I knew if the surgeon had sent a sample to pathology after that surgery…

                                                                                                                                                                                                                                You know, I really hate this "seeing melanoma behind every bush" thing.  Trying to balance my understanding of this disease and the treatments with not letting every sniffle become cancer is difficult.

                                                                                                                                                                                                                                JerryfromFauq
                                                                                                                                                                                                                                Participant

                                                                                                                                                                                                                                  Ask for the "hemmorhpoid" pathology report.  If they question you on it present my case as a reason for askig!  3 1/2 years was too long for my PCP to have waited.  The one good thing my local surgeon did was to get a pat report, finally.  Do keep an "eye" on the lymph nodes in the groin, and follow up on any enlargement.  Don't make the area sore from too energetic checking!

                                                                                                                                                                                                                                    casagrayson
                                                                                                                                                                                                                                    Participant

                                                                                                                                                                                                                                      So far, everything has been new primaries.  I'm just concerned because my husband is now having rectal bleeding.  He does have a history of hemorroids but had surgery several years ago an he has not had any problems since.  He is having no pain, but the bleeding is heavier than it ever was.  I wish I knew if the surgeon had sent a sample to pathology after that surgery…

                                                                                                                                                                                                                                      You know, I really hate this "seeing melanoma behind every bush" thing.  Trying to balance my understanding of this disease and the treatments with not letting every sniffle become cancer is difficult.

                                                                                                                                                                                                                                      casagrayson
                                                                                                                                                                                                                                      Participant

                                                                                                                                                                                                                                        So far, everything has been new primaries.  I'm just concerned because my husband is now having rectal bleeding.  He does have a history of hemorroids but had surgery several years ago an he has not had any problems since.  He is having no pain, but the bleeding is heavier than it ever was.  I wish I knew if the surgeon had sent a sample to pathology after that surgery…

                                                                                                                                                                                                                                        You know, I really hate this "seeing melanoma behind every bush" thing.  Trying to balance my understanding of this disease and the treatments with not letting every sniffle become cancer is difficult.

                                                                                                                                                                                                                                      technogrannie8
                                                                                                                                                                                                                                      Participant

                                                                                                                                                                                                                                        Back from MDA in Houston for initial consult and tests.  Usual initial stuff and total body PET and brain MRI.  No report on those yet and no conversation regarding C-kit and/or B-RAF mutations.  I see melanoma radiologist next week and maybe it will come up then.  I see MDA has Integrative Medicine Dept.  Think I will request consult with them if it is not suggested.  I have always been interested in natural health alternatives and, when possible, have followed suggestions of people in that field that I trust  rather than take drugs.  Already put myself on healing diet of no sugar, no white anything, no dairy and lots of blenderized veggies, greens and fruits.  This afte reading Dr. Patrick Quillen's book, Beating Cancer with Nutrition, Dr. Russell Blaylock's book Natural Strategies, and Doug Kaufmann's book The Germ that Causes Cancer.  Can't do all they suggest (my wallet is not fat enough), but I'm trying to as much as I can.  Would really like to have a doctor that will work with me on this instead of having a negative attitude about it.  Anyone here have any experience using such strategies?

                                                                                                                                                                                                                                        technogrannie8
                                                                                                                                                                                                                                        Participant

                                                                                                                                                                                                                                          Back from MDA in Houston for initial consult and tests.  Usual initial stuff and total body PET and brain MRI.  No report on those yet and no conversation regarding C-kit and/or B-RAF mutations.  I see melanoma radiologist next week and maybe it will come up then.  I see MDA has Integrative Medicine Dept.  Think I will request consult with them if it is not suggested.  I have always been interested in natural health alternatives and, when possible, have followed suggestions of people in that field that I trust  rather than take drugs.  Already put myself on healing diet of no sugar, no white anything, no dairy and lots of blenderized veggies, greens and fruits.  This afte reading Dr. Patrick Quillen's book, Beating Cancer with Nutrition, Dr. Russell Blaylock's book Natural Strategies, and Doug Kaufmann's book The Germ that Causes Cancer.  Can't do all they suggest (my wallet is not fat enough), but I'm trying to as much as I can.  Would really like to have a doctor that will work with me on this instead of having a negative attitude about it.  Anyone here have any experience using such strategies?

                                                                                                                                                                                                                                          technogrannie8
                                                                                                                                                                                                                                          Participant

                                                                                                                                                                                                                                            Back from MDA in Houston for initial consult and tests.  Usual initial stuff and total body PET and brain MRI.  No report on those yet and no conversation regarding C-kit and/or B-RAF mutations.  I see melanoma radiologist next week and maybe it will come up then.  I see MDA has Integrative Medicine Dept.  Think I will request consult with them if it is not suggested.  I have always been interested in natural health alternatives and, when possible, have followed suggestions of people in that field that I trust  rather than take drugs.  Already put myself on healing diet of no sugar, no white anything, no dairy and lots of blenderized veggies, greens and fruits.  This afte reading Dr. Patrick Quillen's book, Beating Cancer with Nutrition, Dr. Russell Blaylock's book Natural Strategies, and Doug Kaufmann's book The Germ that Causes Cancer.  Can't do all they suggest (my wallet is not fat enough), but I'm trying to as much as I can.  Would really like to have a doctor that will work with me on this instead of having a negative attitude about it.  Anyone here have any experience using such strategies?

                                                                                                                                                                                                                                            JerryfromFauq
                                                                                                                                                                                                                                            Participant

                                                                                                                                                                                                                                              To update/edit ones profile:  Click on "Profile" upper left corner under "Learn more" "Community".  "Browse"   on the browse page it gives instructiions for editing ones profile. 

                                                                                                                                                                                                                                              Currently they don't prescribe the C-kit meds as an adjuvanaat to prevent re-occurance.  They are looking into possibly using the anti-BRAF ddrugs  as an adjuvant in Stage III BRAF cases.  Not FDA aapproved as an adjuvant/prentative. 

                                                                                                                                                                                                                                              The advantage of haaving the test run before any re-occurance appears is that time will be safed as to possibilities for treatment IF further treatment is needed.

                                                                                                                                                                                                                                              Falda123
                                                                                                                                                                                                                                              Participant

                                                                                                                                                                                                                                                Hello, looking for folks who have experience with mucosal melanoma. This thread is a bit old and didn't know if there's a newer one. 

                                                                                                                                                                                                                                                  CHD
                                                                                                                                                                                                                                                  Participant

                                                                                                                                                                                                                                                    Hi – There are a few of us here with mucosal, but it might be best to start a new thread, if you haven't already, since the forum does not automatically move these to the top when someone posts in them unless you view with that option.  What type of mucosal do you have?

                                                                                                                                                                                                                                                    CHD
                                                                                                                                                                                                                                                    Participant

                                                                                                                                                                                                                                                      Hi – There are a few of us here with mucosal, but it might be best to start a new thread, if you haven't already, since the forum does not automatically move these to the top when someone posts in them unless you view with that option.  What type of mucosal do you have?

                                                                                                                                                                                                                                                      CHD
                                                                                                                                                                                                                                                      Participant

                                                                                                                                                                                                                                                        Hi – There are a few of us here with mucosal, but it might be best to start a new thread, if you haven't already, since the forum does not automatically move these to the top when someone posts in them unless you view with that option.  What type of mucosal do you have?

                                                                                                                                                                                                                                                      Falda123
                                                                                                                                                                                                                                                      Participant

                                                                                                                                                                                                                                                        Hello, looking for folks who have experience with mucosal melanoma. This thread is a bit old and didn't know if there's a newer one. 

                                                                                                                                                                                                                                                        Falda123
                                                                                                                                                                                                                                                        Participant

                                                                                                                                                                                                                                                          Hello, looking for folks who have experience with mucosal melanoma. This thread is a bit old and didn't know if there's a newer one. 

                                                                                                                                                                                                                                                          JerryfromFauq
                                                                                                                                                                                                                                                          Participant

                                                                                                                                                                                                                                                            Have they checked for C-kit or B-Raf oncoprotiens or DNA mutations yet?  Do you know who you will see at MDA yet?

                                                                                                                                                                                                                                                            Now is a better time to be here than when I joined with mucosal Stage IV in 2007!    Now is not a time to be giving up!  Come on Techie!

                                                                                                                                                                                                                                                            JerryfromFauq
                                                                                                                                                                                                                                                            Participant

                                                                                                                                                                                                                                                              Have they checked for C-kit or B-Raf oncoprotiens or DNA mutations yet?  Do you know who you will see at MDA yet?

                                                                                                                                                                                                                                                              Now is a better time to be here than when I joined with mucosal Stage IV in 2007!    Now is not a time to be giving up!  Come on Techie!

                                                                                                                                                                                                                                                              JerryfromFauq
                                                                                                                                                                                                                                                              Participant

                                                                                                                                                                                                                                                                Have they checked for C-kit or B-Raf oncoprotiens or DNA mutations yet?  Do you know who you will see at MDA yet?

                                                                                                                                                                                                                                                                Now is a better time to be here than when I joined with mucosal Stage IV in 2007!    Now is not a time to be giving up!  Come on Techie!

                                                                                                                                                                                                                                                                technogrannie8
                                                                                                                                                                                                                                                                Participant

                                                                                                                                                                                                                                                                  Will see Dr. Jeffery Myers tomorrow for my first apt.  Traveling today to Houston.  The fact that you are still here is encouragement.  Thanks for responding.  I'll post more when I know more.

                                                                                                                                                                                                                                                                  technogrannie8
                                                                                                                                                                                                                                                                  Participant

                                                                                                                                                                                                                                                                    Will see Dr. Jeffery Myers tomorrow for my first apt.  Traveling today to Houston.  The fact that you are still here is encouragement.  Thanks for responding.  I'll post more when I know more.

                                                                                                                                                                                                                                                                    technogrannie8
                                                                                                                                                                                                                                                                    Participant

                                                                                                                                                                                                                                                                      Will "reply" to Jerry because I'm not sure how to post "update."  I may be technogrannie, but still pretty challenged on some of this tech stuff.

                                                                                                                                                                                                                                                                      Decision made at MDAnderson to treat my mucosal with 5 radiation treatments only because the tissue that is left is "insitu"–not really cancer yet.  I have had one treatment, 4 to go. I know I'm looking at a period of time with very sore mouth and throat.  Doing research and setting up program of supplements to help protect and heal.  Will see Complementary'Alternative doctor here on Friday for his/her suggestions.

                                                                                                                                                                                                                                                                      They are going to test for the proteins but will be a while before I know the results.  However, dr. said that infor would only be helpful if the cancer returns and they need to decide how to treat it then.

                                                                                                                                                                                                                                                                      I' m grateful to have fouond this forum to see and learn.

                                                                                                                                                                                                                                                                      technogrannie8
                                                                                                                                                                                                                                                                      Participant

                                                                                                                                                                                                                                                                        Will "reply" to Jerry because I'm not sure how to post "update."  I may be technogrannie, but still pretty challenged on some of this tech stuff.

                                                                                                                                                                                                                                                                        Decision made at MDAnderson to treat my mucosal with 5 radiation treatments only because the tissue that is left is "insitu"–not really cancer yet.  I have had one treatment, 4 to go. I know I'm looking at a period of time with very sore mouth and throat.  Doing research and setting up program of supplements to help protect and heal.  Will see Complementary'Alternative doctor here on Friday for his/her suggestions.

                                                                                                                                                                                                                                                                        They are going to test for the proteins but will be a while before I know the results.  However, dr. said that infor would only be helpful if the cancer returns and they need to decide how to treat it then.

                                                                                                                                                                                                                                                                        I' m grateful to have fouond this forum to see and learn.

                                                                                                                                                                                                                                                                        technogrannie8
                                                                                                                                                                                                                                                                        Participant

                                                                                                                                                                                                                                                                          Will "reply" to Jerry because I'm not sure how to post "update."  I may be technogrannie, but still pretty challenged on some of this tech stuff.

                                                                                                                                                                                                                                                                          Decision made at MDAnderson to treat my mucosal with 5 radiation treatments only because the tissue that is left is "insitu"–not really cancer yet.  I have had one treatment, 4 to go. I know I'm looking at a period of time with very sore mouth and throat.  Doing research and setting up program of supplements to help protect and heal.  Will see Complementary'Alternative doctor here on Friday for his/her suggestions.

                                                                                                                                                                                                                                                                          They are going to test for the proteins but will be a while before I know the results.  However, dr. said that infor would only be helpful if the cancer returns and they need to decide how to treat it then.

                                                                                                                                                                                                                                                                          I' m grateful to have fouond this forum to see and learn.

                                                                                                                                                                                                                                                                          JerryfromFauq
                                                                                                                                                                                                                                                                          Participant

                                                                                                                                                                                                                                                                            I would see no reason this couldn't happen.  Some Head and neck as well as acral lentigamous melanomas can have the c-kit onco-protein & DNA mutations that mucosal melanoma can have.  If melanoma gets into the blood system, it can go anyehere in the body.

                                                                                                                                                                                                                                                                            JerryfromFauq
                                                                                                                                                                                                                                                                            Participant

                                                                                                                                                                                                                                                                              I would see no reason this couldn't happen.  Some Head and neck as well as acral lentigamous melanomas can have the c-kit onco-protein & DNA mutations that mucosal melanoma can have.  If melanoma gets into the blood system, it can go anyehere in the body.

                                                                                                                                                                                                                                                                              JerryfromFauq
                                                                                                                                                                                                                                                                              Participant

                                                                                                                                                                                                                                                                                Ask for the "hemmorhpoid" pathology report.  If they question you on it present my case as a reason for askig!  3 1/2 years was too long for my PCP to have waited.  The one good thing my local surgeon did was to get a pat report, finally.  Do keep an "eye" on the lymph nodes in the groin, and follow up on any enlargement.  Don't make the area sore from too energetic checking!

                                                                                                                                                                                                                                                                                JerryfromFauq
                                                                                                                                                                                                                                                                                Participant

                                                                                                                                                                                                                                                                                  Ask for the "hemmorhpoid" pathology report.  If they question you on it present my case as a reason for askig!  3 1/2 years was too long for my PCP to have waited.  The one good thing my local surgeon did was to get a pat report, finally.  Do keep an "eye" on the lymph nodes in the groin, and follow up on any enlargement.  Don't make the area sore from too energetic checking!

                                                                                                                                                                                                                                                                                  JerryfromFauq
                                                                                                                                                                                                                                                                                  Participant

                                                                                                                                                                                                                                                                                    To update/edit ones profile:  Click on "Profile" upper left corner under "Learn more" "Community".  "Browse"   on the browse page it gives instructiions for editing ones profile. 

                                                                                                                                                                                                                                                                                    Currently they don't prescribe the C-kit meds as an adjuvanaat to prevent re-occurance.  They are looking into possibly using the anti-BRAF ddrugs  as an adjuvant in Stage III BRAF cases.  Not FDA aapproved as an adjuvant/prentative. 

                                                                                                                                                                                                                                                                                    The advantage of haaving the test run before any re-occurance appears is that time will be safed as to possibilities for treatment IF further treatment is needed.

                                                                                                                                                                                                                                                                                    JerryfromFauq
                                                                                                                                                                                                                                                                                    Participant

                                                                                                                                                                                                                                                                                      To update/edit ones profile:  Click on "Profile" upper left corner under "Learn more" "Community".  "Browse"   on the browse page it gives instructiions for editing ones profile. 

                                                                                                                                                                                                                                                                                      Currently they don't prescribe the C-kit meds as an adjuvanaat to prevent re-occurance.  They are looking into possibly using the anti-BRAF ddrugs  as an adjuvant in Stage III BRAF cases.  Not FDA aapproved as an adjuvant/prentative. 

                                                                                                                                                                                                                                                                                      The advantage of haaving the test run before any re-occurance appears is that time will be safed as to possibilities for treatment IF further treatment is needed.

                                                                                                                                                                                                                                                                                  Viewing 41 reply threads
                                                                                                                                                                                                                                                                                  • You must be logged in to reply to this topic.
                                                                                                                                                                                                                                                                                  About the MRF Patient Forum

                                                                                                                                                                                                                                                                                  The MRF Patient Forum is the oldest and largest online community of people affected by melanoma. It is designed to provide peer support and information to caregivers, patients, family and friends. There is no better place to discuss different parts of your journey with this cancer and find the friends and support resources to make that journey more bearable.

                                                                                                                                                                                                                                                                                  The information on the forum is open and accessible to everyone. To add a new topic or to post a reply, you must be a registered user. Please note that you will be able to post both topics and replies anonymously even though you are logged in. All posts must abide by MRF posting policies.

                                                                                                                                                                                                                                                                                  Popular Topics