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.

Question about melanoma recurrence

Forums General Melanoma Community Question about melanoma recurrence

  • Post
    trishahimm
    Participant

      Hi all,

      I have a couple of questions for the panel of pros here. 

      Overview:

      Hi all,

      I have a couple of questions for the panel of pros here. 

      Overview:

      My dad had a very large and deep ulcerated melanoma tumor on the bottom of his foot with metastasis throughout the groin with "invasion " into the lymph and blood vessels. They had to wait until the surgical sites were healed before starting the radiation on the foot and groin for 8 weeks and then interferon for a year. That was the treatment plan they laid out for him just after his surgery about 8 weeks ago. So finally he healed and started radiation about 2 weeks ago and last week he noticed 4 new rapidly growing spots on his foot. The surgeon cut them out and they will not have results until tomorrow or Thursday but the surgeon and oncologist are positive this is more melanoma. He will be going in for new scans soon.

      My dad's question: do the new tumors start from deep in his foot and then grow up to the surface? He is thinking that because the original tumor was 11 cm deep, these somehow started down deep and then have worked their way up. I don't think this is the case, but I don't really know. Does anyone know? I told him to ask his oncologist as well.

      My question: is this really soon for a recurrence? This seems pretty aggressive to me when there were no signs of additional cancer in the foot just 3.5 months ago when they originally did surgery on the foot and to have 4 pop up and then double in size within a matter of 5 days.

      Any feedback or comments would be appreciated.

      Thanks,

      Trisha

    Viewing 11 reply threads
    • Replies
        bblapril
        Participant

          Hi Trisha,

          Unfortunately my husband is going through something similar right now.  He had a tumor removed from his neck in June and has been undergoing Interferon treatments.  This past week he had another bump that has appeared very close to where the previous tumor was removed.  His oncologist thought it was an infection but he met his surgeon today and he isn't too sure about that.  He had a needle biopsy done today and a ct scan is scheduled later this week and we meet the Dr. again next Tuesday.  It is going to be a very long wait….I will let you know what we find out…please do the same.

          Thanks,

          April

          bblapril
          Participant

            Hi Trisha,

            Unfortunately my husband is going through something similar right now.  He had a tumor removed from his neck in June and has been undergoing Interferon treatments.  This past week he had another bump that has appeared very close to where the previous tumor was removed.  His oncologist thought it was an infection but he met his surgeon today and he isn't too sure about that.  He had a needle biopsy done today and a ct scan is scheduled later this week and we meet the Dr. again next Tuesday.  It is going to be a very long wait….I will let you know what we find out…please do the same.

            Thanks,

            April

            FormerCaregiver
            Participant

              Trisha, Sorry to read about your dad's deep tumour. I assume that it was over 4mm in depth, but I am not sure what you mean by the 11cm measurement. If you can fill in some details on the profile page for him, that would help us to help you better.

              Once any melanoma cells enter the bloodstream they can spread throughout the body. Unfortunately, melanoma is unpredictable in what it does and nobody can say for certain what it is going to do in any individual.

              If you have a copy of the pathology report, it would be an idea to tell us what it says. Perhaps you could scan it and paste some details in your next post?

              As melanoma can recur and spread quickly, CT and PET scans are normally recommended in order to get an accurate assessment of what is going on.

              Hope this helps.

              Frank from Australia

                trishahimm
                Participant

                  Sorry it should have said 11mm, not cm. His original tumor was 11mm deep. My dad spoke with the oncologist yesterday. After these recent tumors, they are now going to push up the interferon starting in 2.5 weeks instead of 5.5 weeks. My dad was asking how long does the Dr think he might have ballpark. The Dr. said that he wished he had a crystal ball, but "it doesn't look good". He hasn't had a scan in 4 months. Nothing showed in his initial scans other than the original foot tumor, but after they checked the sentinel lymph nodes as a precaution- 4 out of the 5 nodes had cancer and they did a radical lymphadenctomy. The surgeon said it was into the blood vessels there and that she got as much as she could.

                  There haven't been any tests showing it in organs or other areas of the skin other than these recent new ones near the original tumor site. If he is officially just stage 3 right now, why are they already so hopeless? I see people on this board who are stage 4 that have been living with melanoma for a long time. Is his case different from other peoples' somehow? I just don't understand why suddenly after these recent tumors they have almost no hope for my dad's cancer. I am confused.

                  trishahimm
                  Participant

                    Sorry it should have said 11mm, not cm. His original tumor was 11mm deep. My dad spoke with the oncologist yesterday. After these recent tumors, they are now going to push up the interferon starting in 2.5 weeks instead of 5.5 weeks. My dad was asking how long does the Dr think he might have ballpark. The Dr. said that he wished he had a crystal ball, but "it doesn't look good". He hasn't had a scan in 4 months. Nothing showed in his initial scans other than the original foot tumor, but after they checked the sentinel lymph nodes as a precaution- 4 out of the 5 nodes had cancer and they did a radical lymphadenctomy. The surgeon said it was into the blood vessels there and that she got as much as she could.

                    There haven't been any tests showing it in organs or other areas of the skin other than these recent new ones near the original tumor site. If he is officially just stage 3 right now, why are they already so hopeless? I see people on this board who are stage 4 that have been living with melanoma for a long time. Is his case different from other peoples' somehow? I just don't understand why suddenly after these recent tumors they have almost no hope for my dad's cancer. I am confused.

                    FormerCaregiver
                    Participant

                      Trisha, I thought that the depth might have been 11mm so thanks for clarifying that. What treatment has your oncologist offered your dad, apart from the interferon? As you may have read, it is a very old drug and its use is controversial. I believe that there are far better alternatives these days.

                      The big problem with a deep primary melanoma is that regular CT and/or PET scans are now required to monitor any internal tumours that may have formed. I feel that the depth of the primary is more important than stage, as it gives a better indication of a patient's prognosis.

                      Nothing is certain with melanoma and therefore no case is hopeless. However, it is important to have an oncologist who has the latest information on new treatments and clinical trials. Therefore, it is always wise to consult a melanoma specialist with any concerns that you may have.

                      Hope this helps.

                      Frank from Australia

                      FormerCaregiver
                      Participant

                        Trisha, I thought that the depth might have been 11mm so thanks for clarifying that. What treatment has your oncologist offered your dad, apart from the interferon? As you may have read, it is a very old drug and its use is controversial. I believe that there are far better alternatives these days.

                        The big problem with a deep primary melanoma is that regular CT and/or PET scans are now required to monitor any internal tumours that may have formed. I feel that the depth of the primary is more important than stage, as it gives a better indication of a patient's prognosis.

                        Nothing is certain with melanoma and therefore no case is hopeless. However, it is important to have an oncologist who has the latest information on new treatments and clinical trials. Therefore, it is always wise to consult a melanoma specialist with any concerns that you may have.

                        Hope this helps.

                        Frank from Australia

                        trishahimm
                        Participant

                          Sorry it should have said 11mm, not cm. His original tumor was 11mm deep. My dad spoke with the oncologist yesterday. After these recent tumors, they are now going to push up the interferon starting in 2.5 weeks instead of 5.5 weeks. My dad was asking how long does the Dr think he might have ballpark. The Dr. said that he wished he had a crystal ball, but "it doesn't look good". He hasn't had a scan in 4 months. Nothing showed in his initial scans other than the original foot tumor, but after they checked the sentinel lymph nodes as a precaution- 4 out of the 5 nodes had cancer and they did a radical lymphadenctomy. The surgeon said it was into the blood vessels there and that she got as much as she could.

                          There haven't been any tests showing it in organs or other areas of the skin other than these recent new ones near the original tumor site. If he is officially just stage 3 right now, why are they already so hopeless? I see people on this board who are stage 4 that have been living with melanoma for a long time. Is his case different from other peoples' somehow? I just don't understand why suddenly after these recent tumors they have almost no hope for my dad's cancer. I am confused.

                          trishahimm
                          Participant

                            Sorry it should have said 11mm, not cm. His original tumor was 11mm deep. My dad spoke with the oncologist yesterday. After these recent tumors, they are now going to push up the interferon starting in 2.5 weeks instead of 5.5 weeks. My dad was asking how long does the Dr think he might have ballpark. The Dr. said that he wished he had a crystal ball, but "it doesn't look good". He hasn't had a scan in 4 months. Nothing showed in his initial scans other than the original foot tumor, but after they checked the sentinel lymph nodes as a precaution- 4 out of the 5 nodes had cancer and they did a radical lymphadenctomy. The surgeon said it was into the blood vessels there and that she got as much as she could.

                            There haven't been any tests showing it in organs or other areas of the skin other than these recent new ones near the original tumor site. If he is officially just stage 3 right now, why are they already so hopeless? I see people on this board who are stage 4 that have been living with melanoma for a long time. Is his case different from other peoples' somehow? I just don't understand why suddenly after these recent tumors they have almost no hope for my dad's cancer. I am confused.

                          FormerCaregiver
                          Participant

                            Trisha, Sorry to read about your dad's deep tumour. I assume that it was over 4mm in depth, but I am not sure what you mean by the 11cm measurement. If you can fill in some details on the profile page for him, that would help us to help you better.

                            Once any melanoma cells enter the bloodstream they can spread throughout the body. Unfortunately, melanoma is unpredictable in what it does and nobody can say for certain what it is going to do in any individual.

                            If you have a copy of the pathology report, it would be an idea to tell us what it says. Perhaps you could scan it and paste some details in your next post?

                            As melanoma can recur and spread quickly, CT and PET scans are normally recommended in order to get an accurate assessment of what is going on.

                            Hope this helps.

                            Frank from Australia

                            Hereiam
                            Participant

                              Hi Trisha,

                              I am very sorry to hear about your dad!

                              As much as I know, melanoma can really spread fast, so pay attention to any changes that occur. Maybe your dad should combine chemo with medicine which would improve his immune system and activate the healthy cells (something like virotherapy or alternative medicine), cuz the most important thing through recovery is to strengthen the body in order to effectively undergo treatment. From the experience with my cousin, her worst fear was of cancer coming back once it was seemingly gone. In her case she combined radio plus virotherapy in order to get rid of nasty side-effects of radio and to be sure that no malignant cell would appear. Anyhow, maybe consult your doctor about such possibilities.

                              Wishing you and your father all the best!

                              Hereiam
                              Participant

                                Hi Trisha,

                                I am very sorry to hear about your dad!

                                As much as I know, melanoma can really spread fast, so pay attention to any changes that occur. Maybe your dad should combine chemo with medicine which would improve his immune system and activate the healthy cells (something like virotherapy or alternative medicine), cuz the most important thing through recovery is to strengthen the body in order to effectively undergo treatment. From the experience with my cousin, her worst fear was of cancer coming back once it was seemingly gone. In her case she combined radio plus virotherapy in order to get rid of nasty side-effects of radio and to be sure that no malignant cell would appear. Anyhow, maybe consult your doctor about such possibilities.

                                Wishing you and your father all the best!

                                  trishahimm
                                  Participant

                                    As far as I have heard chemo doesn't touch melanoma. The oncologist said they don't even bother giving it anymore because it doesn't help.

                                    Hereiam
                                    Participant

                                      But in this case, you should seek for possible options even more. If chemical drugs and therapies can`tt help, try methods which at least can be hepful if not totally make cancer go away. I`m not a specialist and can`t say what is good or bad, but from my experience with cousin, virotherapy did far more better job than any of those chemicals.
                                      Good luck!

                                      Hereiam
                                      Participant

                                        But in this case, you should seek for possible options even more. If chemical drugs and therapies can`tt help, try methods which at least can be hepful if not totally make cancer go away. I`m not a specialist and can`t say what is good or bad, but from my experience with cousin, virotherapy did far more better job than any of those chemicals.
                                        Good luck!

                                        trishahimm
                                        Participant

                                          As far as I have heard chemo doesn't touch melanoma. The oncologist said they don't even bother giving it anymore because it doesn't help.

                                        cwu
                                        Participant

                                          Hi Trisha,

                                          I am very sorry to hear about your dad.  It sounds like he is going through a similar situation like my father.  My father also has acral melanoma, which started from the bottom of his right heel.  He had surgery to remove the tumor and it came back about a year later. He now has alot of lesions on his right calf and some on hisi upper thigh and groin area.  I dont know whether your father's tumor is a recurrence or not but I would think it is a good idea to have it check out and explore treatment options.  When my dad had surgery to remove his tumor, the surgeon didnt think my father was in good enough condition to start treatment right away.  And unfortunately, it came back.  In retrospect,we should have been more aware that there is a chance that it could recur. I have read that melanoma does tend to recur.  My father just started his first dose of Yervoy(IPI) last week.  I hope this helps. 

                                          Chau

                                          cwu
                                          Participant

                                            Hi Trisha,

                                            I am very sorry to hear about your dad.  It sounds like he is going through a similar situation like my father.  My father also has acral melanoma, which started from the bottom of his right heel.  He had surgery to remove the tumor and it came back about a year later. He now has alot of lesions on his right calf and some on hisi upper thigh and groin area.  I dont know whether your father's tumor is a recurrence or not but I would think it is a good idea to have it check out and explore treatment options.  When my dad had surgery to remove his tumor, the surgeon didnt think my father was in good enough condition to start treatment right away.  And unfortunately, it came back.  In retrospect,we should have been more aware that there is a chance that it could recur. I have read that melanoma does tend to recur.  My father just started his first dose of Yervoy(IPI) last week.  I hope this helps. 

                                            Chau

                                            jonsie_57
                                            Participant

                                              Hi Trisha,

                                              I am so sorry to hear about your dad.  My husband is also battling a recurrence of melanoma.  The first episode was in March 2010 when he had a tumor taken off of his neck (really deep but I forget the actual measurements).  At that time the sentinel node biopsy came back clear and the pet scan came back  clear also.

                                              In April of 2011 he developed a hoarse throat and what we thought was the respiratory stuff going around at the time.  Chest exrays showed five tumors in his lungs and multiple tumors in his chest area.

                                              Has your fathers oncologist mentioned trying your dad on yervoy or testing him for the braf600 mutation gene for the new treatment , zelobraf, that is given by pill?  My husband tested negative for the braf gene but took four treatments of yervoy and his latest ct scan only showed two tumors in his lungs that are less than a cm each and nothing else in the chest.  He has another scan  in November to see if that one showed correctly

                                              I certainly know some of what you are going through and I wish the best for you and your dad. 

                                              Kay

                                                FormerCaregiver
                                                Participant

                                                  Kay, welcome to our forum. Sorry to read of your husband's multiple tumours. It is encouraging that he has responded well to Yervoy.

                                                  However, I wonder if your husband has a plan for further treatment if the scans in November reveal disease progression? Has he consulted a surgical oncologist to find out if the tumours that he has now can be removed with surgery?

                                                  Best wishes

                                                  Frank from Australia

                                                  FormerCaregiver
                                                  Participant

                                                    Kay, welcome to our forum. Sorry to read of your husband's multiple tumours. It is encouraging that he has responded well to Yervoy.

                                                    However, I wonder if your husband has a plan for further treatment if the scans in November reveal disease progression? Has he consulted a surgical oncologist to find out if the tumours that he has now can be removed with surgery?

                                                    Best wishes

                                                    Frank from Australia

                                                  jonsie_57
                                                  Participant

                                                    Hi Trisha,

                                                    I am so sorry to hear about your dad.  My husband is also battling a recurrence of melanoma.  The first episode was in March 2010 when he had a tumor taken off of his neck (really deep but I forget the actual measurements).  At that time the sentinel node biopsy came back clear and the pet scan came back  clear also.

                                                    In April of 2011 he developed a hoarse throat and what we thought was the respiratory stuff going around at the time.  Chest exrays showed five tumors in his lungs and multiple tumors in his chest area.

                                                    Has your fathers oncologist mentioned trying your dad on yervoy or testing him for the braf600 mutation gene for the new treatment , zelobraf, that is given by pill?  My husband tested negative for the braf gene but took four treatments of yervoy and his latest ct scan only showed two tumors in his lungs that are less than a cm each and nothing else in the chest.  He has another scan  in November to see if that one showed correctly

                                                    I certainly know some of what you are going through and I wish the best for you and your dad. 

                                                    Kay

                                                    JerryfromFauq
                                                    Participant

                                                      Trish, Chau

                                                      For melanomas that start on the bottom of the foot, they are likely to be Acral lentiginous melanoma. 

                                                      My melanoma  is c-kit mucosal melanoma.  I went from clear lungs in a mid Jan 2007 PET/CT scan to having innumerable lung tumors in a late Feb 2007 Lung CT scan. I was essentially stable on IL-2 for 20 months.  Then had innumerable additiional new lung tumor between Dec 2008 and March 2009 and additional tumors elsewher.  Inspite of the lack of approval for Gleevec by the FDA for melanoma, My Melanoma specialist, based  on the one published peer reviewed publication of Gleevec working on c-kit (and work being done by Dr Wen Jen Hwu at MDA), prescribed it off-label for me.  My tumors became stable within 30 days and have remained stable for another 2 1/2 years.  

                                                         Since that time there has been much more work and trials fo drugs targged at the C-kit mutations.  I strongly recommend getting the oncoprotein stain test (The first test for c-kit – can be done by any local lab).  If positive, a c-kit mutation test can be conducted by a specialized lab.

                                                      Below is information about drugs that help when one has the c-kit oncoprotein overexprssion and the c-kit DNA mutations.

                                                      http://mmdm.cancercommons.org/ml/index.php/C-KIT

                                                      Activating c-KIT mutations have been implicated in a variety of cancers (Lennartsson 2005) starting with GIST (Gastrointestinal stromal tumors) and CML (Chronic Myelogenous Leukemia). Because of this, there are both approved drugs and drugs in clinical development that target c-KIT including Imatinib, Sunitib, Nilotinib and Dasatanib.

                                                      In 2006, Boris Bastian's group conducted a systematic study evaluating the frequency of c-KIT aberrations in melanoma and found mutations and/or copy number increases in 39% of mucosal, 36% of acral and 28% of melanomas on chronically sun-damaged skins but not in melanomas on skin without chronic sun damage (Curtis 2006). Several additional studies have investigated frequency of c-KIT aberrations since and are summarized below. Also, 30% of melanoma with c-KIT mutations also show increased copy number/amplification of c-KIT.

                                                      c-KIT aberrations in melanoma (Woodman 2010)
                                                      Type of melanoma Copy number Mutations    
                                                      Acral 24%  
                                                      Mucosal- All 26%  
                                                      Mucosal- Head & neck   12%
                                                      Mucosal- Geritourinary   27%
                                                      Mucosal- Anorectal   12%

                                                      c-KIT is increasingly considered a leading therapeutic target for melanoma. So far, supporting data has primarily come from case reports and small studies (Hodi 2008, Lutzky 2008, Satzger 2010). However, both approved and new drugs are being testing in melanoma with c-KIT aberrations and results are awaited

                                                      Drugs Targeting C-Kit

                                                      [<>] [<>] Drug Class [<>] Company [<>] HasDevelopmentStatus [<>] Clinical Trial
                                                      Dasatinib C-KIT inhibitors Bristol-Myers Squibb Approved for chronic myeloid leukemia (CML) and Philadelphia chromosome-positive acute lymphoblastic leukemia (Ph+ ALL) NCT01092728
                                                      NCT00436605
                                                      NCT00597038
                                                      NCT00792545
                                                      Gleevec C-KIT inhibitors Novartis Approved for Philadelphia chromosome–positive chronic myeloid leukemia (Ph+ CML), Kit (CD117)–positive gastrointestinal stromal tumors (GIST) NCT00424515
                                                      NCT00470470
                                                      NCT00667953
                                                      NCT00881049
                                                      NCT00421317
                                                      NCT01046487
                                                      Sutent C-KIT inhibitors Pfizer Approved for advanced kidney cancer and Gleevec-resistant GIST NCT00631618
                                                      NCT00577382
                                                      NCT00859326
                                                      NCT01216657
                                                      NCT01005472
                                                      NCT00489944
                                                      Tasigna C-KIT inhibitors Novartis Approved for drug-resistant Chronic Myeloid Leukemia (CML) NCT00788775
                                                      NCT01168050
                                                      NCT01028222
                                                      NCT01099514

                                                       

                                                      Pathway c-KIT pathway
                                                      Technology Targeted sequencing
                                                      Vendors Arup, Fox Chase, Caris, Mayo Clinic, MPLN, TML, UCSF
                                                      DrugClass c-KIT inhibitors
                                                      Comments  

                                                      Relevant Subtypes: Subtype 2.1

                                                      Relevant Trials:

                                                      [<>] Trials [<>] Status [<>] Title
                                                      NCT00421317 Recruiting Imatinib in Adult Patients With Metastatic Ocular Melanoma
                                                      NCT00424515 Recruiting Imatinib in Patients With Mucosal or Acral/Lentiginous Melanoma
                                                      NCT00436605 Active but not recruiting Dasatinib in Treating Patients With Stage III Melanoma That Cannot Be Removed By Surgery or Stage IV Melanoma
                                                      NCT00470470 Recruiting Imatinib Mesylate in Treating Patients With Stage III or Stage IV Melanoma That Cannot Be Removed by Surgery
                                                      NCT00489944 Recruiting Sunitinib, Tamoxifen, and Cisplatin in Treating Patients With High-Risk Ocular Melanoma
                                                      NCT00577382 Recruiting SU011248 in Patients With Metastatic Mucosal or Acral/Lentiginous Melanoma
                                                      NCT00597038 Active, not recruiting A Phase I/II Study of Dasatinib and Dacarbazine
                                                      NCT00631618 Recruiting Clinical Trial of Sutent to Treat Metastatic Melanoma
                                                      NCT00667953 Active not recruiting Study of Temzolomide and Gleevec in Advanced Melanoma
                                                      NCT00700882 Suspended Dasatinib in Treating Patients With Locally Advanced or Metastatic Mucosal Melanoma, Acral Melanoma, or Solar Melanoma That Cannot Be Removed By Surgery
                                                      NCT00788775 Recruiting Nilotinib in TKI Resistant or Intolerant Patients With Metastatic Mucosal, Acral, or Chronically Sun Damaged Melanoma
                                                      NCT00792545 Recruiting Dasatinib and Bevacizumab in Treating Patients With Solid Tumors That Are Metastatic or Cannot be Removed by Surgery
                                                      NCT00859326 Recruiting Combination of Temozolomide and Sunitinib in Treatment of Patients With Metastatic and Unresectable Malignant Melanoma
                                                      NCT00881049 Completed Trial of Imatinib (Gleevec®) in Selected Patients With Metastatic Melanoma
                                                      NCT01005472 Active not recruiting Temozolomide and Sunitinib Malate in Treating Patients With Stage III or Stage IV Malignant Melanoma
                                                      NCT01028222 Recruiting A Study of AMNN107 Against Dacarbazine (DTIC) in the Treatment of Metastatic and/or Inoperable Melanoma Harboring a c-Kit Mutation (TEAM)
                                                      NCT01046487 Recruiting Imatinib Mesylate And Cyclophosphamide In Metronomic Administration: Dose Escalation Study Of Imatinib Mesylate (PALANGI3)
                                                      NCT01092728 Not yet recruiting Treatment With Dasatinib in Patients With Acral Lentiginous, Mucosal, or Chronic Sun-damaged Melanoma
                                                      NCT01099514 Recruiting Study of Nilotinib in Metastatic Melanoma With KIT Aberrations
                                                      NCT01168050 Recruiting Efficacy of Nilotinib in First or Second Line Treatment of Primary Melanomas Stage III Unresectable Melanomas.
                                                      NCT01216657 Recruiting Trial of Single Agent Sunitinib for Patients With Chemo-refractory Metastatic Melanoma

                                                      **********************************************************

                                                      Also look at;

                                                      http://oncologystat.com/journals/journal_scans/KIT_as_a_Therapeutic_Target_in_Metastatic_Melanoma.html

                                                       


                                                      Even if one does not have the C-kit nor BRAF (they are mutually exlusive) One cannot ubequivalently state that "chemo doesn't touch melanoma."  There are many chemo's that have made some melanoma patients NED or else slowed their disease (Most only in the 1-3% range).  The problem is that they have not yet learned why they work on the few that they do work on.

                                                         IL-2 and Ipi (Yervoy), Immunotherapy treatments (not considered chemo), have  record of helpiing around 20% of across the board melanoma stage IV patients.  Again they don 't know exactly why, but these broad spectrum treatments can be effective for many.  So far IL-2 has the highes long term "remission/cure" rate for about 5% of stage IV patients.

                                                       

                                                      Good luck with the testing.

                                                        cwu
                                                        Participant

                                                          Jerry,

                                                          Thank you for this information, it is very helpful. I have not been able to find  alot of information and limited treatment options for those with C-kit mutations so this is great.  I also saw your recent post about melanoma molecular disease model and that is also informative for me to learn more about this disease as a I am a newbie to all of this.  Thank you for sharing your knowledge with us.

                                                          Chau

                                                          Lisa13
                                                          Participant

                                                            Hi Trisha,

                                                            I'm very sorry you and your family are going through this. I also was diagnosed with a deep primary in February, which spread to my lungs by April. Because your father's tumour was deep and invaded his lymphatic system and likely bloodstream, it's easy for it to go anywhere it wants. 

                                                            I tend to agree with Frank in Australia – Interferon is an old drug. I opted out of Interferon and into a clinical trial with ipi before I metastazied. IPI works to boost the immune system to kill the cancer, so if there are any microscopic cells laying around, the immune system can recognize them and potential destroy them. I don't think Interferon has the power to do this and know it makes people feel quite sick.  IPI has also worked very well on people's sub q's (which I believe your father has) and although the side effects can potentially be serious, everyone is different and symptoms are well managed with medication.

                                                            Please be sure your father is seeing a melanoma specialist and not a regular oncologist. I don't like how the Dr. insinuated your Dad's outcome may not be good.  There are several people on this board who had deep primary's above 10mm and are still here 3 and 5 years later. There are new and improved drugs that are allowing people to live much longer than the statistics and your father could be one of them too.

                                                            Best of luck to you.

                                                            Lisa 

                                                            Lisa13
                                                            Participant

                                                              Hi Trisha,

                                                              I'm very sorry you and your family are going through this. I also was diagnosed with a deep primary in February, which spread to my lungs by April. Because your father's tumour was deep and invaded his lymphatic system and likely bloodstream, it's easy for it to go anywhere it wants. 

                                                              I tend to agree with Frank in Australia – Interferon is an old drug. I opted out of Interferon and into a clinical trial with ipi before I metastazied. IPI works to boost the immune system to kill the cancer, so if there are any microscopic cells laying around, the immune system can recognize them and potential destroy them. I don't think Interferon has the power to do this and know it makes people feel quite sick.  IPI has also worked very well on people's sub q's (which I believe your father has) and although the side effects can potentially be serious, everyone is different and symptoms are well managed with medication.

                                                              Please be sure your father is seeing a melanoma specialist and not a regular oncologist. I don't like how the Dr. insinuated your Dad's outcome may not be good.  There are several people on this board who had deep primary's above 10mm and are still here 3 and 5 years later. There are new and improved drugs that are allowing people to live much longer than the statistics and your father could be one of them too.

                                                              Best of luck to you.

                                                              Lisa 

                                                              Lisa13
                                                              Participant

                                                                Hi Trisha,

                                                                I'm very sorry you and your family are going through this. I also was diagnosed with a deep primary in February, which spread to my lungs by April. Because your father's tumour was deep and invaded his lymphatic system and likely bloodstream, it's easy for it to go anywhere it wants. 

                                                                I tend to agree with Frank in Australia – Interferon is an old drug. I opted out of Interferon and into a clinical trial with ipi before I metastazied. IPI works to boost the immune system to kill the cancer, so if there are any microscopic cells laying around, the immune system can recognize them and potential destroy them. I don't think Interferon has the power to do this and know it makes people feel quite sick.  IPI has also worked very well on people's sub q's (which I believe your father has) and although the side effects can potentially be serious, everyone is different and symptoms are well managed with medication.

                                                                Please be sure your father is seeing a melanoma specialist and not a regular oncologist. I don't like how the Dr. insinuated your Dad's outcome may not be good.  There are several people on this board who had deep primary's above 10mm and are still here 3 and 5 years later. There are new and improved drugs that are allowing people to live much longer than the statistics and your father could be one of them too.

                                                                Best of luck to you.

                                                                Lisa 

                                                                cwu
                                                                Participant

                                                                  Jerry,

                                                                  Thank you for this information, it is very helpful. I have not been able to find  alot of information and limited treatment options for those with C-kit mutations so this is great.  I also saw your recent post about melanoma molecular disease model and that is also informative for me to learn more about this disease as a I am a newbie to all of this.  Thank you for sharing your knowledge with us.

                                                                  Chau

                                                                JerryfromFauq
                                                                Participant

                                                                  Trish, Chau

                                                                  For melanomas that start on the bottom of the foot, they are likely to be Acral lentiginous melanoma. 

                                                                  My melanoma  is c-kit mucosal melanoma.  I went from clear lungs in a mid Jan 2007 PET/CT scan to having innumerable lung tumors in a late Feb 2007 Lung CT scan. I was essentially stable on IL-2 for 20 months.  Then had innumerable additiional new lung tumor between Dec 2008 and March 2009 and additional tumors elsewher.  Inspite of the lack of approval for Gleevec by the FDA for melanoma, My Melanoma specialist, based  on the one published peer reviewed publication of Gleevec working on c-kit (and work being done by Dr Wen Jen Hwu at MDA), prescribed it off-label for me.  My tumors became stable within 30 days and have remained stable for another 2 1/2 years.  

                                                                     Since that time there has been much more work and trials fo drugs targged at the C-kit mutations.  I strongly recommend getting the oncoprotein stain test (The first test for c-kit – can be done by any local lab).  If positive, a c-kit mutation test can be conducted by a specialized lab.

                                                                  Below is information about drugs that help when one has the c-kit oncoprotein overexprssion and the c-kit DNA mutations.

                                                                  http://mmdm.cancercommons.org/ml/index.php/C-KIT

                                                                  Activating c-KIT mutations have been implicated in a variety of cancers (Lennartsson 2005) starting with GIST (Gastrointestinal stromal tumors) and CML (Chronic Myelogenous Leukemia). Because of this, there are both approved drugs and drugs in clinical development that target c-KIT including Imatinib, Sunitib, Nilotinib and Dasatanib.

                                                                  In 2006, Boris Bastian's group conducted a systematic study evaluating the frequency of c-KIT aberrations in melanoma and found mutations and/or copy number increases in 39% of mucosal, 36% of acral and 28% of melanomas on chronically sun-damaged skins but not in melanomas on skin without chronic sun damage (Curtis 2006). Several additional studies have investigated frequency of c-KIT aberrations since and are summarized below. Also, 30% of melanoma with c-KIT mutations also show increased copy number/amplification of c-KIT.

                                                                  c-KIT aberrations in melanoma (Woodman 2010)
                                                                  Type of melanoma Copy number Mutations    
                                                                  Acral 24%  
                                                                  Mucosal- All 26%  
                                                                  Mucosal- Head & neck   12%
                                                                  Mucosal- Geritourinary   27%
                                                                  Mucosal- Anorectal   12%

                                                                  c-KIT is increasingly considered a leading therapeutic target for melanoma. So far, supporting data has primarily come from case reports and small studies (Hodi 2008, Lutzky 2008, Satzger 2010). However, both approved and new drugs are being testing in melanoma with c-KIT aberrations and results are awaited

                                                                  Drugs Targeting C-Kit

                                                                  [<>] [<>] Drug Class [<>] Company [<>] HasDevelopmentStatus [<>] Clinical Trial
                                                                  Dasatinib C-KIT inhibitors Bristol-Myers Squibb Approved for chronic myeloid leukemia (CML) and Philadelphia chromosome-positive acute lymphoblastic leukemia (Ph+ ALL) NCT01092728
                                                                  NCT00436605
                                                                  NCT00597038
                                                                  NCT00792545
                                                                  Gleevec C-KIT inhibitors Novartis Approved for Philadelphia chromosome–positive chronic myeloid leukemia (Ph+ CML), Kit (CD117)–positive gastrointestinal stromal tumors (GIST) NCT00424515
                                                                  NCT00470470
                                                                  NCT00667953
                                                                  NCT00881049
                                                                  NCT00421317
                                                                  NCT01046487
                                                                  Sutent C-KIT inhibitors Pfizer Approved for advanced kidney cancer and Gleevec-resistant GIST NCT00631618
                                                                  NCT00577382
                                                                  NCT00859326
                                                                  NCT01216657
                                                                  NCT01005472
                                                                  NCT00489944
                                                                  Tasigna C-KIT inhibitors Novartis Approved for drug-resistant Chronic Myeloid Leukemia (CML) NCT00788775
                                                                  NCT01168050
                                                                  NCT01028222
                                                                  NCT01099514

                                                                   

                                                                  Pathway c-KIT pathway
                                                                  Technology Targeted sequencing
                                                                  Vendors Arup, Fox Chase, Caris, Mayo Clinic, MPLN, TML, UCSF
                                                                  DrugClass c-KIT inhibitors
                                                                  Comments  

                                                                  Relevant Subtypes: Subtype 2.1

                                                                  Relevant Trials:

                                                                  [<>] Trials [<>] Status [<>] Title
                                                                  NCT00421317 Recruiting Imatinib in Adult Patients With Metastatic Ocular Melanoma
                                                                  NCT00424515 Recruiting Imatinib in Patients With Mucosal or Acral/Lentiginous Melanoma
                                                                  NCT00436605 Active but not recruiting Dasatinib in Treating Patients With Stage III Melanoma That Cannot Be Removed By Surgery or Stage IV Melanoma
                                                                  NCT00470470 Recruiting Imatinib Mesylate in Treating Patients With Stage III or Stage IV Melanoma That Cannot Be Removed by Surgery
                                                                  NCT00489944 Recruiting Sunitinib, Tamoxifen, and Cisplatin in Treating Patients With High-Risk Ocular Melanoma
                                                                  NCT00577382 Recruiting SU011248 in Patients With Metastatic Mucosal or Acral/Lentiginous Melanoma
                                                                  NCT00597038 Active, not recruiting A Phase I/II Study of Dasatinib and Dacarbazine
                                                                  NCT00631618 Recruiting Clinical Trial of Sutent to Treat Metastatic Melanoma
                                                                  NCT00667953 Active not recruiting Study of Temzolomide and Gleevec in Advanced Melanoma
                                                                  NCT00700882 Suspended Dasatinib in Treating Patients With Locally Advanced or Metastatic Mucosal Melanoma, Acral Melanoma, or Solar Melanoma That Cannot Be Removed By Surgery
                                                                  NCT00788775 Recruiting Nilotinib in TKI Resistant or Intolerant Patients With Metastatic Mucosal, Acral, or Chronically Sun Damaged Melanoma
                                                                  NCT00792545 Recruiting Dasatinib and Bevacizumab in Treating Patients With Solid Tumors That Are Metastatic or Cannot be Removed by Surgery
                                                                  NCT00859326 Recruiting Combination of Temozolomide and Sunitinib in Treatment of Patients With Metastatic and Unresectable Malignant Melanoma
                                                                  NCT00881049 Completed Trial of Imatinib (Gleevec®) in Selected Patients With Metastatic Melanoma
                                                                  NCT01005472 Active not recruiting Temozolomide and Sunitinib Malate in Treating Patients With Stage III or Stage IV Malignant Melanoma
                                                                  NCT01028222 Recruiting A Study of AMNN107 Against Dacarbazine (DTIC) in the Treatment of Metastatic and/or Inoperable Melanoma Harboring a c-Kit Mutation (TEAM)
                                                                  NCT01046487 Recruiting Imatinib Mesylate And Cyclophosphamide In Metronomic Administration: Dose Escalation Study Of Imatinib Mesylate (PALANGI3)
                                                                  NCT01092728 Not yet recruiting Treatment With Dasatinib in Patients With Acral Lentiginous, Mucosal, or Chronic Sun-damaged Melanoma
                                                                  NCT01099514 Recruiting Study of Nilotinib in Metastatic Melanoma With KIT Aberrations
                                                                  NCT01168050 Recruiting Efficacy of Nilotinib in First or Second Line Treatment of Primary Melanomas Stage III Unresectable Melanomas.
                                                                  NCT01216657 Recruiting Trial of Single Agent Sunitinib for Patients With Chemo-refractory Metastatic Melanoma

                                                                  **********************************************************

                                                                  Also look at;

                                                                  http://oncologystat.com/journals/journal_scans/KIT_as_a_Therapeutic_Target_in_Metastatic_Melanoma.html

                                                                   


                                                                  Even if one does not have the C-kit nor BRAF (they are mutually exlusive) One cannot ubequivalently state that "chemo doesn't touch melanoma."  There are many chemo's that have made some melanoma patients NED or else slowed their disease (Most only in the 1-3% range).  The problem is that they have not yet learned why they work on the few that they do work on.

                                                                     IL-2 and Ipi (Yervoy), Immunotherapy treatments (not considered chemo), have  record of helpiing around 20% of across the board melanoma stage IV patients.  Again they don 't know exactly why, but these broad spectrum treatments can be effective for many.  So far IL-2 has the highes long term "remission/cure" rate for about 5% of stage IV patients.

                                                                   

                                                                  Good luck with the testing.

                                                              Viewing 11 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