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April 17, 2013 at 6:03 pm #21196
my friend who has had the melanoma spread to his lungs, liver, pancreas, brain (1.3mm and treated with gamma knife) and subcutaneous tissue, just found out today that it is BRAF negative.
I’m wondering what treatments are available for BRAF negative, or any clinical trials that you’ve heard of. He’s done no prior systemic treatments, just surgery and radiation 2 years ago to remove the initial melanoma.
The doctors here are planning to start chemo in 2 weeks, I just want to look at all the options and start researching so that we have back up treatments in the works.
Thanks so much for all your help!
NikkiApril 17, 2013 at 8:23 pm #60130
You are a good friend to have! Your friend could do IPI (Yervoy) which is approved by the FDA. There is no chemo that gives a good response to melanoma. There are also many PD1 trials out there (another immunotherapy) that he could join. That’s a good starting point. What part of the country do you live in? A specialist is important for this disease.April 17, 2013 at 8:58 pm #60131
We’re in Ontario Canada……seeing Dr. Petrella out of Toronto, but we’re hoping that if treatments aren’t offered here, we can go to the states……we were also thinking maybe we’d get a second opinion in the states, just to make sure we’re doing enough and fast enough
NikkiApril 17, 2013 at 11:25 pm #60132
Please check out our global list for centers in Canada that offer good melanoma programs: http://www.melanomainternational.org/resources/global_resource.html
I believe Yervoy is available in Canada.April 28, 2013 at 7:11 am #60133DianapParticipant
I am BRAF Negative Wild
I have it in my pancreas, Lung, bones, and just gone to the brain, which I had removed by surgery. I nearly opted for cyberknife, but I am so pleased that I went for the traditional method of surgery. I have a lovely small scar, it was carried out at Addenbrookes, Cambridge, UK. 4 night stay and so far so…….sorry you will see I don’t tempt fate.
I opted out of chemo, after checking the statistics, I think it is under 6%. Here in the UK that is the front line drug to be used Dacazbine (don’t quote me). After a bit of work, leaving one London Hospital and requesting to be moved to Cambridge, I am now on the Ippy Drug, 2nd cycle. This is being paid by my BUPA which I have had for 20 years now and is a god send in these circumstances.
When you are in this situation, it is like being in a Maze, and I have said before, My husand and I were in that for three years, not sure what to do or where to turn.
I was talking to someone on the Cancer Research Line here in the UK and she was telling me how many more trials there were now for Melanoma, but it is a case of going through them all to find the right one. I know you aren’t looking for a trial but I did think of that for myself being BRAF Wild. Being in the UK I wonder if you have similar in Canada?
I hope you find a suitable route soon,
DianaMay 1, 2013 at 10:38 pm #60134frannnyParticipant
We were at The Angels Clinic and Research Institute today.
there is a trial MK-3475 that takes all melanomas.
it is under the Clinicaltrials.org.
best regards, frannyMay 5, 2013 at 6:26 am #60135
thank you so much for the information. I am searching all the clinical trials now. We are seeing a specialist in Michigan at the Karmanos Clinic on May 16th to discuss clinical trials, so hopefully we can qualify.May 5, 2013 at 12:22 pm #60136 You might also check on some trials that are being led at Sarah Cannon by Dr. Infante. They are a new targeted therapy that you don’t have to be BRAF positive for. “The clinical trial ID is NCT01522664 and the drug is Genentech DEDN6526A. This is an antibody drug conjugate (ADC) with the antibody attracted to an ETBR receptor on the surface of melanoma cells. After the drug attaches itself to the melanoma cell, it then kills it. We discussed them in a different thread here. Search the forum for ADC. The trial is expanding..
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