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.

new here, ftr with stage IV

Forums General Melanoma Community new here, ftr with stage IV

  • Post
    naty
    Participant

      Hi I'm new here as of tonight.  My ftr was diagnosed with stage IV melanoma with mets in liver, spleen, lung, and brain.  I'm a nurse (peds so this is out of my league) so I have the family job of researcher.  He is to start whole head radiation tomorrow for 13 sessions and then follow up in 3 wks with his oncologist and see about starting temedor.  I did ask that he be tested for the BRAF mutation which the he obliged to do.  If he is negative what is showing some positive results?

      Hi I'm new here as of tonight.  My ftr was diagnosed with stage IV melanoma with mets in liver, spleen, lung, and brain.  I'm a nurse (peds so this is out of my league) so I have the family job of researcher.  He is to start whole head radiation tomorrow for 13 sessions and then follow up in 3 wks with his oncologist and see about starting temedor.  I did ask that he be tested for the BRAF mutation which the he obliged to do.  If he is negative what is showing some positive results?  it seems if you have brain mets (active) you tend to be excluded form most studies.  He's otherwise healthy! (or was he is going down hill fast and scaring me).  Not sure what other info may be pertinant.  Oh, he did 13-14mo's of interferon when he was diagnosed back in 2006.  I guess he should have started interferon shortly afer dx but he started 6mo's later so I guess that was for nothing?  I was looking at the vaccine program in Chicago but again brain mets and his tumor on his liver at this point I believe is too large.

      thanks!  great site here for info and support!!

      Melissa

    Viewing 9 reply threads
    • Replies
        jim Breitfeller
        Participant

          Melissa, 

          HD IL-2 followed by temozolomide

          Unsuccessful high dose IL-2 therapy followed immediately by near continuous low dose temozolomide can result in rapid durable complete and near-complete remissions in metastatic melanoma.

          http://www.ncbi.nlm.nih.gov/pubmed/20930514

            naty
            Participant

              thank you!  I'll look into this.  Do you know or anyone else do we (he) need to fail a treatment course first with IL-2?  I'll look at clinicaltrials.gov

              Jerry from Cape Cod
              Participant

                IL2 does not require failure of other treatments. 

                Jerry from Cape Cod

                Jerry from Cape Cod
                Participant

                  IL2 does not require failure of other treatments. 

                  Jerry from Cape Cod

                  naty
                  Participant

                    thank you!  I'll look into this.  Do you know or anyone else do we (he) need to fail a treatment course first with IL-2?  I'll look at clinicaltrials.gov

                  jim Breitfeller
                  Participant

                    Melissa, 

                    HD IL-2 followed by temozolomide

                    Unsuccessful high dose IL-2 therapy followed immediately by near continuous low dose temozolomide can result in rapid durable complete and near-complete remissions in metastatic melanoma.

                    http://www.ncbi.nlm.nih.gov/pubmed/20930514

                    Jerry from Cape Cod
                    Participant

                      Hi Melissa,

                      First thing, you can't look back only forward.  Playing shoulda, coulda, woulda, will only cause heartburn. 

                      You'll have time to continue research while your father is doing the WBR.

                      Is he being treated by a melanoma specialist?  This is probably one of the most critical factors today with the treatment options/trials changing on what seems to be nearly daily.

                      I'm sure others will chime in with more considerations.

                      Jerry from Cape Cod

                        naty
                        Participant

                          He is not seeing a melanoma specialist, "just" an oncologist at the Cancer Hematology center here.  He actually didn't know much about BRAF and PLX4032 (he said they are in stage I trials, but I believe it is moving to stage III?)  Where are in Michigan (we did go to U of M and they said just radiation and temedor again).  Should we try cleveland clinic? Mayo?  He is willing to travel at this point.  

                          Jerry from Cape Cod
                          Participant

                            Hi,

                            The trials are phases not stages… which can get very confusing.  A phase in the trial is for the goal of the particular trial.

                            Typically phase I trials are for dosage tolerance, each additonal phase is designed for specific reasons.

                            Again, typically all trials start with Stage IV patients because if effective the results will show quickly with active disease.  We with Stage IV disease are perfect lab rats.

                            I don't have any information about treatment in your area.  I think the best option is for you to post a new topic with the subject "Looking for Doctor/Treatment Center in the Michigan area."  Post a brief explaination and see what the results are.  It may take a few days to get results.

                            Jerry from Cape Cod

                            Jerry from Cape Cod
                            Participant

                              Hi,

                              The trials are phases not stages… which can get very confusing.  A phase in the trial is for the goal of the particular trial.

                              Typically phase I trials are for dosage tolerance, each additonal phase is designed for specific reasons.

                              Again, typically all trials start with Stage IV patients because if effective the results will show quickly with active disease.  We with Stage IV disease are perfect lab rats.

                              I don't have any information about treatment in your area.  I think the best option is for you to post a new topic with the subject "Looking for Doctor/Treatment Center in the Michigan area."  Post a brief explaination and see what the results are.  It may take a few days to get results.

                              Jerry from Cape Cod

                              naty
                              Participant

                                He is not seeing a melanoma specialist, "just" an oncologist at the Cancer Hematology center here.  He actually didn't know much about BRAF and PLX4032 (he said they are in stage I trials, but I believe it is moving to stage III?)  Where are in Michigan (we did go to U of M and they said just radiation and temedor again).  Should we try cleveland clinic? Mayo?  He is willing to travel at this point.  

                              Jerry from Cape Cod
                              Participant

                                Hi Melissa,

                                First thing, you can't look back only forward.  Playing shoulda, coulda, woulda, will only cause heartburn. 

                                You'll have time to continue research while your father is doing the WBR.

                                Is he being treated by a melanoma specialist?  This is probably one of the most critical factors today with the treatment options/trials changing on what seems to be nearly daily.

                                I'm sure others will chime in with more considerations.

                                Jerry from Cape Cod

                                jim Breitfeller
                                Participant

                                  Melissa,

                                  Most Clinical trials will want to get the brain Mets under control first.

                                  The liver tumor can taken care of with Percutaneous Hepatic Perfusion (“PHP”), for the treatment of ocular and cutaneous melanoma metastatic to the liver.

                                   

                                  Hepatic Arterial Melphalan Infusion and Hepatic Venous Hemofiltration Using Percutaneously Placed Catheters in Patients With Unresectable Hepatic Malignancies.

                                  James F. Pingpank, Jr., MD, FACS
                                  Associate Professor of Surgery
                                  Division of Surgical Oncology
                                  Suite 406, UPMC Cancer Pavillion
                                  5150 Centre Avenue
                                  Pittsburgh, PA 15232
                                  412-692-2852 (Office)
                                  412-692-2520 (Fax)
                                  [email protected]

                                   

                                    naty
                                    Participant

                                      Wow, we were told that if he were to have increasing constant pain then he could consider radiation to his spleen (it is uncomfortable at times for him to walk, but no one has addressed the liver.  We were told that there is no surgery for melanoma.  I am so glad I joined this board and there is so much more hope than we have been experiencing.  Thank you all for your info, advice, and experiences!!

                                      naty
                                      Participant

                                        Wow, we were told that if he were to have increasing constant pain then he could consider radiation to his spleen (it is uncomfortable at times for him to walk, but no one has addressed the liver.  We were told that there is no surgery for melanoma.  I am so glad I joined this board and there is so much more hope than we have been experiencing.  Thank you all for your info, advice, and experiences!!

                                      jim Breitfeller
                                      Participant

                                        Melissa,

                                        Most Clinical trials will want to get the brain Mets under control first.

                                        The liver tumor can taken care of with Percutaneous Hepatic Perfusion (“PHP”), for the treatment of ocular and cutaneous melanoma metastatic to the liver.

                                         

                                        Hepatic Arterial Melphalan Infusion and Hepatic Venous Hemofiltration Using Percutaneously Placed Catheters in Patients With Unresectable Hepatic Malignancies.

                                        James F. Pingpank, Jr., MD, FACS
                                        Associate Professor of Surgery
                                        Division of Surgical Oncology
                                        Suite 406, UPMC Cancer Pavillion
                                        5150 Centre Avenue
                                        Pittsburgh, PA 15232
                                        412-692-2852 (Office)
                                        412-692-2520 (Fax)
                                        [email protected]

                                         

                                        JerryfromFauq
                                        Participant

                                          Please get to a Melanoma specialist.  Too much going on in this field for even a specialist to know it all, but a general Oncoloist is left way behind.  There are many good Ceenters with Melnoma specialists.  Some are Sloan Kettering, John Hopkins, NIH,.and one of the worlds top centers is MD Anderson in Texas.  i personally go to the Melanooma Specialist at UVA after having been very disappointed with GP's and general Oncologists. 

                                             As has been previusly stated, they will be the most cncernedd with the brain tumors and temador is the main chemo that crosses the Blood Brain barrier.

                                              I have been stage IV since early 2007, and am still enjoying life. (and grandkids.)

                                              Good  luck to yoour Father and his helper.  It is very nice to have this help.

                                            LynnLuc
                                            Participant

                                              I hope your father can be seen by a oncologist who specializes in Melanoma…my old oncologist didn't know anything about melanoma either and he was basically waiting on me to get "bad" and then hit it with hard core chemo…and he said it probably wouldn't work anyways….that is why he is not my oncologist now…I amd stage 4 melanoma with no evidence of disease ( NED)…Temodar worked for me for 7 months and Mayo said they were surprised it lasted so long…chemotherapy works differently for everybody…something works for one may not work for another,

                                              I am currently in a clinical vaccine trial at Moffitt in Tampa with Dr Weber…they specialize in melanoma there. Prayers and blessings for you and your father!

                                              IPI and Anti PD-1 (MDX-1106) is the two I would look into as well as the PLX 4032. I think the HDIL-2 works great for a very few but I couldn't put myself through that…I know a lot of people who went through it and it returned shortly afterwards…I guess I would try anything though if I thought it would work…- Lynn

                                              LynnLuc
                                              Participant

                                                I hope your father can be seen by a oncologist who specializes in Melanoma…my old oncologist didn't know anything about melanoma either and he was basically waiting on me to get "bad" and then hit it with hard core chemo…and he said it probably wouldn't work anyways….that is why he is not my oncologist now…I amd stage 4 melanoma with no evidence of disease ( NED)…Temodar worked for me for 7 months and Mayo said they were surprised it lasted so long…chemotherapy works differently for everybody…something works for one may not work for another,

                                                I am currently in a clinical vaccine trial at Moffitt in Tampa with Dr Weber…they specialize in melanoma there. Prayers and blessings for you and your father!

                                                IPI and Anti PD-1 (MDX-1106) is the two I would look into as well as the PLX 4032. I think the HDIL-2 works great for a very few but I couldn't put myself through that…I know a lot of people who went through it and it returned shortly afterwards…I guess I would try anything though if I thought it would work…- Lynn

                                              JerryfromFauq
                                              Participant

                                                Please get to a Melanoma specialist.  Too much going on in this field for even a specialist to know it all, but a general Oncoloist is left way behind.  There are many good Ceenters with Melnoma specialists.  Some are Sloan Kettering, John Hopkins, NIH,.and one of the worlds top centers is MD Anderson in Texas.  i personally go to the Melanooma Specialist at UVA after having been very disappointed with GP's and general Oncologists. 

                                                   As has been previusly stated, they will be the most cncernedd with the brain tumors and temador is the main chemo that crosses the Blood Brain barrier.

                                                    I have been stage IV since early 2007, and am still enjoying life. (and grandkids.)

                                                    Good  luck to yoour Father and his helper.  It is very nice to have this help.

                                                Cate
                                                Participant

                                                  Hi, I would look into seeing a melanoma specialist before your dad undergoes WBR.  Maybe SRS would be better (it is more targeted therapy and does not have the same side effects as WBR.  I'm in the Chicago area and my Dad was treated by Dr. Joseph Clark at Loyola.  (We loved him!)  He also went to University of Chicago,Dr. Gajewski (sp?)  both are melanoma specialists but we personally were much more impressed with Loyola.    Also, you could look at both Northwestern (I forget the name of the specialist we saw there or see Dr. Jon Richards.  I here very good things about him as well.

                                                   

                                                  I know Loyola offers IL-2 and I believe they have IPI as well right now.  You do need to treat the brain mets first.  Don't hesitate to contact me with any questions you may have.  Cate

                                                  Cate
                                                  Participant

                                                    Hi, I would look into seeing a melanoma specialist before your dad undergoes WBR.  Maybe SRS would be better (it is more targeted therapy and does not have the same side effects as WBR.  I'm in the Chicago area and my Dad was treated by Dr. Joseph Clark at Loyola.  (We loved him!)  He also went to University of Chicago,Dr. Gajewski (sp?)  both are melanoma specialists but we personally were much more impressed with Loyola.    Also, you could look at both Northwestern (I forget the name of the specialist we saw there or see Dr. Jon Richards.  I here very good things about him as well.

                                                     

                                                    I know Loyola offers IL-2 and I believe they have IPI as well right now.  You do need to treat the brain mets first.  Don't hesitate to contact me with any questions you may have.  Cate

                                                      naty
                                                      Participant

                                                        The plan was for SRS (he had 2 small subcm spots) but then his MRI 1 wk later showed Many (not sure of the excat number but more than 8) lesions, with some being hemorrhagic.  I'll email you in a bit.  

                                                        naty
                                                        Participant

                                                          The plan was for SRS (he had 2 small subcm spots) but then his MRI 1 wk later showed Many (not sure of the excat number but more than 8) lesions, with some being hemorrhagic.  I'll email you in a bit.  

                                                    Viewing 9 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.