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April 7, 2014 at 3:08 pm #21910
I have to make some quick decisions on two differe approaches to my disease. Quick backstory, i had surgery in September, removed nodes, was in the advjuvent setting, then got on the interferon/Yervoy clincial radomized to Interferon, disease came back in December. Put on Yervoy, it only slowed things down but hasn’t halted anything and now I’m on to another drug.
There is a possible slot at Moffit OR Vanderbilt(I live in Nashville) is offering a clincial Phase 1/11to take a combo drug that is a BRAF and MEK Inhibitor. I have a call into my doctor to discuss both optoins further but I was wondering if any of you had experience?
thanks!April 7, 2014 at 4:15 pm #64031MathewRParticipant
I’m on the GSK BRAF-MEK combo and have gotten good results. These are FDA-approved drugs, so you can get them off trial. If your tumor burden is such that you have options, you might consider pursuing a trial that has more “home run” potential than BRAF-MEK (particularly since the GSK combo is available). You can find out more info regarding those trials by searching this forum or speaking with Catherine (e.g., PD-1, PD-L1, ADC).April 7, 2014 at 4:18 pm #64032MathewRParticipant My post assumes that you’re Stage IV. If that’s not the case, then disregard.April 7, 2014 at 4:46 pm #64033AnonymousGuest If I may, I suggest you stop in and see the folks at Sarah Cannon. They are world class and access to many trials.
JeffApril 8, 2014 at 4:23 pm #64034JonathanParticipant
Yes, echoing JeffB, especially since you live in Nashville, I strongly suggest you inquire over there at Sarah Cannon for a second opinion on your situation. Tell your doc you just want to check out more options, if they exist – he won’t balk (or certainly shouldn’t – if he does, he’s not being ethically correct). For example, I just started a thread on the phase I trial at Sarah Cannon of the ADC drug that targets melanoma with what appears to be about a 60% response rate (very small sample, though), so you can look at that, as well. Sarah Cannon is “clinical trial central”, with over 70 active clinical trials. That’s all they do. Not taking anything away from Vanderbilt and Sossman, but I’d bet Sarah Cannon has more alternatives (including the ADC) than Vanderbilt…Ask for Dr. Infante, and if you want, use me as a reference (or MIF more generally).
Without knowing more details about your situation, I also agree with MatthewR that you should be considering more immunotherapy options beyond Ipi as well – get a plan B and C lined up. Getting interferon in this day and age for stage 4 melanoma was very unfortunate – glad you’re out of that…
All the best,
JonathanApril 17, 2014 at 9:44 pm #64035
Coming back to say that after talking with the doctor and a whirlwind of appointments. I was able to get on a clinical trial thru Vanderbilt that is MEK/BRAF combo drug. It is a little different from the other BRAF / MEK drugs and targets cells further down the line, so to speak that is why it is clinical trial. I was able to get on it quickly which was important since ipi didn’t make a difference and my disease wasn’t slowing down, I have many lesions on my skin and two nodes involved also there is some suspious activity in my spine ( showed up in PET but couldn’t see it on CT) which happened since I was on ipi. So far the side effects are all over body soreness, fatigue and itchy skin.
And thanks for the suggestion about Sarah Cannon, we did get a second opinion from Dr. Infante, who was great but at that time in my disease (adjuvant) they couldn’t offer me anything different than vanderbilt could. I’m still going to moffitt just in case I fail the drug that im currently on and I need to switch gears before the compassionate care for PD1 becomes available. How I understand it, Vanderbilt will offer it but they don’t actually have the drug in hand yet and of course with compassionate care use you have fail BRAF/MEK anyway.April 17, 2014 at 11:04 pm #64036
Just for clarification I was originally staged at 3c but now that new nodes lit up and with possible activity in my spine I guess I now 4 but no one has told me that and frankly I didn’t ask I just wanted to know what my new direction would be. And since I was at stage 3 that is why I did the clinical for interferon/yervoy because at the time neither Vanderbilt or Sarah Cannon offered any other trial that would be a good fit for me.
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