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Husband Stage 4 – brain, lung, adrenal gland – looking for hope

Forums General Melanoma Community Husband Stage 4 – brain, lung, adrenal gland – looking for hope

  • Post
    Elizabeth123
    Participant

      Hello all I am new here,  but have been reading all your posts for the last few months.   Here is our story.   My husband is stage 4 melanoma,  we were diagnosed last August with it in the lungs, brain and adrenal glands.   He is Braf positive and we were on targeted therapy  Debrafenib & Trametinib.  He tolerated the therapy well with minimal side effects.  The tumors in his lungs and adrenal glands were shrinking.  But the brain kept progressing.  We did gamma knife in august for the first 13 spots,  they were stable , but in October 7 more cropped up and we gamma knifed them too,  in December all previous spots in the brain were stable but 6 more cropped up and we did gamma knife again.  in Feb 2018 we did CT scans and the spots in the body were still responding and shrinking .  Which was all good news,  but the follow up MRI  in mid-march now showed 20 new spots in the brain.  The radiation oncologist recommend whole brain radiation , so we did that  and we switched to immunotherapy Keytruda.   We completed whole brain April 16 and started on Keytruda May 16th  .  First follow up MRI on the brain showed for the first time no new spots.  But 30 spots progressed.  We decided to hold on more gamma knife and see if this could be pseudo  progression and see if it will resolve it self. Since he had normal post radiation side effects which were normal .   Recently in the last few days we are noticing some confusion, and walking issues,  our next MRI is scheduled Aug 3rd  and I am worried.  Any encouragement any one can give would be great.

       

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    • Replies
        casagrayson
        Participant

          I don't have any answers for you, Elizabeth, but I just wanted to say that I'm sorry for what he (and you) are having to go through.  Did your husband have an unknown primary?

            Elizabeth123
            Participant

              his primary was a small mole on his neck in 2013. They removed it and took out 3 lymph nodes.  The nodes were clear.  We had no other issues until last may when he developed a cough , and when we did a cat scan saw there was a 7 cm mass in the right lung.  We did a biopsy and it showed melanoma.   We did full body scans and found it was in the brain and adrenal glands. 

            doragsda
            Participant

              My wife and I (she is the melanoma patient) were just at Angeles Clinic last week for her 3 month checkup with Dr. Hamid.   He said the study with the data from the treatment she's received (Yervoy/OPdivo combo therapy for brain mets) will be published this week or next in the New England Journal of Medicine.   He said the combo showed excellent responses for patients with brain mets.   You might discuss switching him from the Keytruda to the combo to see if he gets a better response.   Good luck to both of you.

              marta010
              Participant

                Hi Elizabeth – my husband has also had brain mets but not to the extent your husband is battling.  Have the docs considered adding the Braf treatment back into the mix?  My husband has been on Dabrafenib for 5 years, which has pretty much kept things stable in his body and brain.  He recently started Keytruda after a previously treated brain met acted up again and was surgically removed.  Take care.

                Ann

                  Cooper
                  Participant

                    You should check out the stage IV forum at http://www.melanomaforum.org and the doctor's column on the site, you will get good advice that is scientifically proven.

                     

                    bjeans
                    Participant

                      Just curious why you seem to keep trying to scoot people away from this forum. The expertise here is formidable: Ed of 1,000 links and grasp of the complexities, Celeste and her advice, primer + summaries of studies, Janner’s separating the wheat from the chaf and providing succinct choices, many others, plus many members with stage 4 and their family members – including Celeste and Ed. 

                      There’s nothing wrong with visiting multiple forums, assuming good info, but being here solely to suggest that people here “should” leave seems a little odd. I’ve visited the forum you mentioned, btw. 

                    ed williams
                    Participant

                      Hi Elizabeth123, sorry about the progression, just wanted to add a little to what doragsda gave you about the combination. They reported data from two studies last June which used the combination vs single Pd-1 drug. Here is the link and best wishes!!!Ed https://www.youtube.com/watch?v=X5xGQpdp9OA

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