Hello. Has anyone been on the Mektovi/Braftovi combo and not experience side effects. It seems like with most the immunotherapy treatment that some people experience side effects and some don’t. But I haven’t found anyone on Mekotvi/Braftovi that hasn’t gotten pretty sick with it. I ran a search but only found one thread on the drug combo. I’d like to hear about more expereinces, good or bad as well as any info on the effectiveness, (if anyone was able to stay on it). Thanks!
- April 29, 2022 at 12:05 am
- April 29, 2022 at 8:02 am
I think there are several here on the targeted therapy combo – Mektovi/Braftovi. Hopefully they will chime in. I have never been on targeted therapy. However, I have put together these posts you may find helpful:
This from 2018: Well, okie dokie!!! BRAFTOVI/MEKTOVI (Seriously guys??? That’s the name???!!!) Encorafenib with Binimetinib approved for melanoma.
And this from 2019: BRAF/MEK combo’s for melanoma analyzed ~
Additional links are contained within each (some link to basic targeted therapy info). Finally, when looking at research data, it is important that each patient is an individual. There are those on this forum (Richard K in particular) who have been maintained on targeted therapy for many years!
Hope that helps. Best wishes. C
- April 29, 2022 at 3:52 pm
I was on Mektovi/Braftovi for nearly two years and tolerated it well. The first four months my treated was Mek/Braf alone and I had very positive results. Skin nodules that you could feel and see disappeared in days; and scans showed a dramatic reduction in metastases. (I started with 13 brain metastases, two of them over 20mm, and after a few months I was down to 4 metastases with the largest around 5mm.)
I later started Ipi/Nivo, but I stayed on Mek/Braf throughout my Ipi/Nivo cycle and for another 18 months in combination with Nivo infusions. The only real side effect I had on Mek/Braf were skin rashes and mild fatigue. (I had more serious side effects with Ipi, but that is another story.) It is hard for me to comment on the effectiveness of Mek/Braf longer term, because once I started immunotherapy it was hard to distinguish the effect of the immuno versus the targeted therapy.
But at least in my case, the Braf/Mek combo alone did not make me sick — just itchy.
Hope that is helpful.
- May 6, 2022 at 9:51 am
I have been on the BRAF/MEK combo twice. I started it in April last year when it was decided IPI/NIVO wasn’t working for me. Combine that with my 2nd COVID shot and I got really sick. Rash, fever, throwing up, etc. We kept lowering the dose until I couldn’t even handle 1 pill of Braftovi so we stopped. Had surgery in June (tumor removal and lymph node dissection) and thinking I was NED we did not do any medication post-surgery. Fast forward to September and we found out I had 8 brain mets. We decided to try it again with a 2/2 dosage along with radiation and I’ve done okay. It makes me tired, but no rash/fever/throwing up. At my last visit, we decided to try 3 weeks of my 2/2 dose, take a week off, and then do 4 Braf/2 Mek for 3 weeks, take a week off, repeat. I’ve found that my skin has gotten really dry and I have even less energy during the 4/2 cycle but still none of the other side effects I had the first time. I go back in June and will talk with my oncologist to see if it has really helped, if not I would prefer to just sticking with the 2/2.
I hope this helps. Best of luck to you!!
I forgot to mention that I do have vitiligo but that started when I was on Nivo as single immunotherapy. It has evolved and changed over the 2 years of various treatments but I suspect BRAK/MEK has had some effect. My hair is also falling out, some of that was due to radiation but that part is growing back. Other parts of my hair are now falling out but I am not sure if that is the BRAF/MEK or something else. Planning to discuss this with my oncologist in June.
- May 6, 2022 at 10:09 am
mmbraddockParticipantHi! I was diagnosed stage 3b in January 2022. I am on my fourth round of Braf/Mek. I have been able to tolerate the full dose. I am 46 with no other health issues. I have extreme fatigue that comes in waves and joint muscle pain that limits activity in the late afternoon and evening. I was sick the first two weeks and had yo take one week of bc of high liver numbers but after the week off bloodwork has been good. I take 3 pills 8am and 9 at 8pm. I also take zofran with night dose. My right groin lymphnode went from 1.5cm to .6 in three months. Next scan July.
- May 16, 2022 at 1:28 am
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