Newbie here! Braftovi/Mektovi Side Effect Question – plus some general stuff

I have been on the Braf/Mek combo since July of last year. I started off with the full dose (6 and 6). Within 2 days my eyes became “wonky” (my term for it). My eyes became dry and blurry. I wear glasses so I kept thinking my glasses were dirty 😁. I also noticed that everything appeared dark like I was wearing sunglasses inside. These side effects lasted about 1 week. Another side effect was nausea. The nausea side effect lasted for about a month before my oncologist dropped the dose to 4 and 4. I had tumors in my lymph nodes and lungs. The tumors in my lymph nodes have all but disappeared. The lung spots haven’t shrunk, but they haven’t really increased either. I’ll take that as a win. The only other side effects is low iron and being very tired (low iron = tiredness)..
I don’t really look at these meds as a Hail Mary. They are just another tool for the oncologist to use to get the tumors under control. I hope your wife starts to feel better. Aside from some transient nausea, I feel pretty 😊.

Hi!
I am on Braf/Mec 12 a day. I had symptoms first day. I couldn’t believe it. I had severe muscle and join pain and unable to take more than a few step by the late afternoon and had diarrhea and vomiting through out the night. My liver enzymes spiked and they took me off of treatment plan for one week. I went back on my body somehow adjusted to the meds. Only symptom I have now is fatigue in the afternoon/early evenly and mild muscle and a joint aches. My liver enzymes were normal after week back on meds so I was able to stay on the full does. I take 3 mek am and 6 braf/3 mek at night. I also take a zofran at night. I initially took the higher dose in the morning but found sleeping through the higher does worked better for me. Hope she is adjusting and it is melting the tumors away.
We are all here b/c we are looking for some type of support. Cancer is not easy.
Hang in there.
MM

Hi there,
It’s nice you are such a dedicated husband. It’s scary to have your loved one fighting this nasty disease.
I was too pretty hyped up by J. Carter’s story when I started my battle with melanoma 2 years ago. With every new treatment I kept reminding myself that there is still hope and I m not suffering too much yet.
Now with bones Mets which hurt like motherfucker I keep reminding myself that I m still around and there is still hope and it can be worse. So there is always silver lining.

Braftovi/Mektovi took time to adjust for my body. Started with vision changes which became normal after couple days. Tiredness yes. Tried not to pay attention and solder on. Overall I didn’t like how I felt on this medications but there was no other choice seem like. I would describe it being dried up to my bones this is how it felt. No amount of water could satisfy this deep down thirst…
There was lots of changes with my monthly visitor. Something was going on with clotting I think. I was losing a lot of blood, like scary a lot. It was a version of a horror movie.

After 7 months the medication stopped working.
Getting Ipi/nivo now and seem like some lesions are growing bigger and some lesions are getting smaller. Not really very positive news.

Your wife’s story sounds pretty hopeful. I like the treatment plan so far. Braf/Mek inhibitors will slow down the disease for now and maybe later she can go back to immunotherapy. She only has one spot now. It’s a pretty good result to one treatment.
There are strict criteria to qualify for the trial. She needs to fail previous treatment for starters. Your wife’s doctor is not the one who decides about TIL. There is cancer.gov site where you would want look for the trial if there is open one and contact them to ask for eligibility.
Stay strong and positive!
Daisy…

Hi there,

I am currently on Braf/Mek for the second time. My first go-round I was on the 6/6 dosage and I had the same vision problems day one – everything was blurry. Fortunately for me, it went away in a day or two. I ended up having some major issues about 2 weeks in, which we now think was due to my stopping Ipi/Nivo after 2 rounds and going straight to Brak/Mek and also having my second COVID shot around the same time. They continued to lower my dosage but I would start projective vomiting immediately after taking it so they switched me to Tafinlar/Mekinist until my surgery in June 2021, which I tolerated better but that is not the norm for most.

Fast forward to September 2021, they found 7 brain mets on my first “NED” follow up. I am back on Brak/Mef now, 2/2 per day. I can’t say for sure what side effects I had due to the meds in the beginning because I was on 16mg dexamethasone, oxycodone for headaches and also had a week of Cyber Knife radiation to my brain. I took a two week break from Braf/Mek a couple weeks ago, and after going back on it I’ve had body aches, fatigue, and occasional upset stomach. I see my radiation oncologist and medical oncologist next Friday, and hopefully, if MRI/CT scans look good maybe we can make some changes.

I don’t know if this information helps, as there are many experts who I have relied on in the forum who can provide proper statistics and better information. As others have said, stay positive and ask questions. My oncologist always tells me I am the captain of this ship, so the decisions are ultimately mine, but I value his knowledge and expertise. Try not to Google too much, it is terrifying and you have to remember no two stories are the same!

Take care and best wishes!
Jenn

I am in the BRAFtovi/Mektovi regiment because of brain metastases that seemed to not get under control and develop after 20+ rounds of Yervoy/Opdivo and then I did 3 rounds of TVEC/Keytruda directly into small tumors in my neck and abdomen that worked but no such thing as TVEC for brain. If you are looking for a TIL doctor, my doctor does it and he’s wonderful. I have not done it myself, but we have discussed it. I had the colitis for months and continued treatment Opdivo through it with steroids, not fun, but I got through it. One day at a time