How long do Braftovi/Mektovi therapy can last?

Million dollar question.

Looks like targeted therapy, although the combo is now vemurafenib and cobimetinib, plus atezolizumab.  I’m still interested in TIL, but I also saw a biopsy result just a day or two ago which said that I had very low PD-L1 expression, which I think maybe means that immunotherapy is not likely to work well on me (and maybe why I am where I am).  I haven’t really been able to discuss the TIL thing with my doctor yet.  I suggested it to them in an email, but didn’t get a direct response back, although they are forging ahead with the targeted therapy.  Maybe they already suspected that immunotherapy isn’t going to be greatly effective because of the PD-L1 expression. I’m going to bring it up again with them next time I meet them face-to-face or by video, but for now, it looks like targeted therapy.

So I’ve been on the combination. For about a month. I failed my first two treatments. Side effects sucked dropped to 2/3 dose. I’m half as strong as I used to be a month ago. I don’t know how long I’ll stay on it.

Doc took me off of immunotherapy last year. Because I told him I had Covid a month earlier so he pulled me off and six months later tumors were in my organs. Did second round mutated tumors. Now I’m trying three with the side effects of the worst and they say that if I go to the other side I got the next one side effects get even worse.
guess I can just be 50% healthy with my diet anymore probably gonna have to go up.
I’m just pissed the Burning man is canceled this year. Don’t know if I can make it next year.

I was on Braftovi/Mektovi for about 6 weeks before I had to stop. I had some pretty awful side effects (extreme fatigue, rash, body aches, vomiting) – we played around with stopping/starting on lower dosages for a while before they decided it was just not for me and moved me to a low dose of Tafinlar/Mekinist. I took that for about 3 weeks before we decided to proceed with surgery to remove the tumor and affected lymph nodes. The original plan was for me to take Braf/Mek for 2 months prior to surgery and then for a year as adjuvant afterward, but due to the surgery’s success they decided to just put me on observation for now with no meds. My first follow-up is in September and will see what is decided then. This was after 9 months of Opdivo only before I stopped responding, and two rounds of Opdivo/Yervoy which did not produce the results we had hoped for.

I don’t know if this information helps at all with your situation and questions, but wanted to share my experience. Even the short time I was on the targeted therapy and the awful side effects we got to where we wanted to be prior to surgery. I am currently NED (yay!).

Best of luck to you and keep fighting!!

Jenn

Jen,

 

i’ve already been through two melanomas surgeries but these are in my organs and I think they’re scared  of surgery so like they’d rather break them up did you try the 2/3 dosage on the Combo before quitting and advancing the surgery. I’m not sure surgeries in my cars because of where my tumors are located my liver and pancreas but yet they continue to grow the first two amino therapy side effects weren’t that bad but this one damn I got older month. They tell me the other options have worst side effects I did take 10 days off before continuing on the drug combo doctors weren’t happy about that. But my stomach pain advance significantly so I got back on it at a 2/3 dosage. Do people in this forum eat a high alkaline anti-inflammatory diet or do you guys just like eat normal. I’ve been eating ridiculously high fiber to fix the constipation against my doctors order who’s wants me to take laxatives.
I have read a lot of people can’t take it. I said it’s been a month but I did skip 10 days in the middle. I will ask about surgery when I see them next in a week

 

 

I did a gym rat for 30 years tried everything under the sun been  Yogi for the last 10 years. Cancer don’t care. I’m still trying to figure out how to do this for real. So far the best answer I have is the Tom Brady diet because I ain’t going vegan

I’ve been on Opdivo since Feb 2020 and started Tafinlar/Mekinist in May 2020 in combo with Opdivo.  Current scans are stable.

J,

Sorry for my late response – I went back to work and my schedule has been crazy trying to recover and get back into the swing of things. They started me on the full dose of Braf/Mek, and about 2 weeks in I was in the hospital with what they said was basically a heat stroke. 3 liters of fluids and started me on 40mg of Prednisone. They took me off Braf/Mek for a few days and started back at 2/3 dose…I woke up in the middle of the night projective vomiting, fever, swollen face and rash everywhere (again). Stopped again, started at a lower dose, same thing. Stopped again, tried one last time with literally one pill of Braftovi and bam, same thing again. They finally pulled the plug on it and moved me to Tafinlar/Mekenist for 3 weeks before my surgery.

To answer your diet question, I ate normally during this time (when I could eat). As far as my surgery, it was my first to remove the OG tumor and affected lymph nodes. I got lucky; they were able to remove everything and I am currently NED. Like I said before, the original plan was for me to take Brak/Mef for a year after surgery but due to all the issues I am currently on no medication and we will monitor. Those were the worst weeks of my life for sure…I hope you are doing well! Take care and keep fighting!!!