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May 14, 2014 at 9:17 pm #21969starlet2007Participant
I am a stage 4 mm patient and currently on vem. I have mets in several places including my brain and wondered whether the location of mets made any difference as to whether you will become a complete or partial responder?
Also could you tell me how long you have been stage 4 patients for and what treatments you are on and whether they are working?
Thanks xMay 14, 2014 at 9:24 pm #64374buffcodyParticipant
I’ve been Stage IV for two years now. Unknown primary. Metastatic melanoma first appeared in lung and quickly to the brain. A little more than a year ago I had a subcutaneous metastasis in my left buttock. Treatment in late 2012 was a combination of stereotactic brain radiation with ipi at the same time. Standard course of 4 ipi injections. I also had a lobectomy July 2012 to remove the initial tumor and surgery to remove the sub-q. I MAY have a recent occurrence of mets in my intestine. Will find out on Friday. I attribute my success to ipi and brain radiation. My doctors also believe that it has had to do with very good physical conditioning going in. No one really knows for sure.
As for your other question, my sense is that no one knows the answer to that either, but I may not be up on the latest research.
FrankMay 15, 2014 at 12:46 am #64375AliciaParticipant
First of all, your question is not stupid
For what I know the location of the tumor does not matter in terms of response, with the exception of the brain and maybe bone mets.
I was diagnosed with melanoma 24 years ago, stage IV since 2003, have been clear since 2005. I had mets in the lung, spine, brain and small bowels. My treatments were surgeries, radiation and GM-CSF.
AliciaMay 15, 2014 at 7:21 am #64376GillyParticipant
Definitely not a stupid question ! My husband was diagnosed stage 4 in Dec 2012 – he had mediastinal/lung and a sub Q met on his hip – he has had 16 months of Zelboraf and has just found a few in transit new mets so will probably come off Zel at the end of the month (after confirmation of PET scan) I agree with Alicia there is a bit of evidence that suggests that having brain mets and success on Zel is slightly less pronounced but that the sister drug Dabrafenib has had some success on brain mets so who knows – i think targeted brain radiation and sometimes WBR can sort out the brain Mets leaving the Zel to attack the rest of the tumours. All the best.May 15, 2014 at 11:50 am #64377gostanParticipant Stage IV for over one year. Two SRS treatments and two weeks of WBR before being able to tolerate two ipi infusions. The colitis side effect attacks knocked the crap out of me, but the brain remains clear and my body mets are fairly stable, except for what is now in my small intestine that is expanding. I went on BRAF/Mek about 10 days ago. Every day is a bit different. Just feeling quite fatigued and I am not really able to push thru each day and do exactly what I want to do. The various treatments have worked for me, but with a multitude of side effects.
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