gopher38

That sounds really positive, and well worth the ordeal. Even the white-hair side effect is often a good sign, no? Hope it continues and thanks for sharing your lived-knowledge of the process, good and bad.

Thanks for your work.

Well, I’m still visiting and reading (visit the FB page also though). You wouldn’t see a post like this on the FB pages, I think. Anyway, thanks for the info. Hope your wife gets info the trial, Rich, and that both of you have good results.

Also wanted to say thanks for posting your experiences. Hope you get an excellent response.

I think I had a much improved response from ipi+nivo, so I wouldn’t count that out. And I think you should definitely be tested for BRAF immediately. I’ve had some what I believe will be permanent (but what does that mean when you’ve got Mel IV) nerve damage, but yours sounds worse. It sounds to me like you should be looking for a new care center. That said, I think they’re always non-committal about how much or if things will heal. Probably wise, but not what we want to hear as patients. I had a hernia operation which left me with marked numbness in one leg, to the extent that my gait was way off. One foot would not really get off the ground too well. Got better thankfully, but right after the operation, the doc’s only comment was: “hopefully it will get better, but it might be permanent”. Not what I wanted to hear.
Anyway, you should definitely know if BRAF is an option.

My AST/ALT numbers were much higher than this, but it was due to targeted therapy, not immunotherapy. I had to stop for several weeks while my liver recovered and then they moved me from whatever the first targeted therapy was to TAF/MEK, which I’ve been tolerating well.

PS: just went back and looked in MyChart and by AST was 715, ALT 1,223

I had leg problems and lasting neuropathy in feet/hand after ipi/nivo, which I think isn’t common, but also not extremely rare, just judging by what I see in the forums. I don’t think it’s listed as a side effect on bms web site, but I’ve heard a number of people mention it. I’m on taf/mek now, and it hasn’t gotten worse (nor better). When I had the leg pain, rather than an ipi side effect (which, like I said, isn’t super common), my onc was worried about spread to spinal fluid or solid tumor in spine. Luckily, spinal tap and full spine MRI came back negative. This thing is a lot of fun, ain’t it?
Hope your faith continues to improve and it’s got nothing to do with mel or treatments.

I have had four (and two basel cell) and they never bothered me at all. Now, if you had something on an eyelid or ear, etc, then I wouldn’t have been happy, but on the torso or limb, I’d just go with it. I can’t image anyone worth his salt that make any judgement in any domain based on that. One of my basel cell operations was ~ 3weeks ago, and it is up near my right eye. I’ve had many people ask about that. I say basel cell carcinoma, and that’s that.

That said, in addituon to laser, I know there’s something like a little sandpaper grinder to smooth out the skin. You might ask about that

Disappointed to hear that opdualag didn’t work. Did it show any results, or a complete flop? I was hoping that that might be another strong weapon. Doubly disappointing to hear the negative TIL results. I hope you’ll look for another trial, if there’s one that’s at all promising, which it seems like there usually is.

Speaking of BRAF, my mother gave me a magazine from MSK which covers some of the things going on there. One article was pretty interesting (at least for me; maybe old news for others). It was specifically about BRAF mutations and the effect that location on the body can have on its development … or not. I don’t have the article here, but I think they were working with some type of small fish (tiger? zebra?) that has some similarities to humans (and is probably easy to manipulate in the lab). They took cells in which they had introduced the BRAF mutation and inserted them into the back and fins (which correspond to the hands on humans). Melanoma developed in the back, but never in the fins. So it’s not just the mutation you have, but where you have the mutation, which determines (at least in part) if it becomes melanoma. I thought it was interesting at any rate. I think it appeared in Nature, so I guess a lot of people found it interesting. Always good to hear that they’re learning more about the enemy.

Hello Judy.
I had horrible pain in my legs, feet and toes after my combo yervoy-nivo treatment. At the cancer clinic, they didn’t think it was immunotherapy related at first, because they said that they really hadn’t seen it in other patients (chemo, yes; but immunotherapy, no). Onc suspected mel in the spine and/or spinal cord fluid. Had to go to the ER for a bunch of tests, and they finally sent me home also with some type of morphine pain reliever and gabapentin. Neither really did much. The pain eventually subsided to a manageable level, but then has stayed constant for 3 years. My current onc has suggested acupuncture, if I’m interested. She said it has helped some patients and done nothing for others. Really annoying side effect though. Hurts to be on my feet for any length of time.

My onc scheduled a brain MRI right after we learned that I had distant progression from the original site. I think he wanted to get a baseline on where we were, encompassing all parts of the body. I’m not sure if that’s standard practice, but it seems wise to me. Perhaps insurance coverage plays a part also.

Well I’m still lurking on the forum, and I certainly hope it doesn’t go away, because I know it’s been very helpful to me. Both for the support/commiseration aspect, as well as the more technical/knowledgeable support from the Bubbles and Eds of the world. I think there are still quite a few people lurking here, even if posts are down. Good luck with Texas Oncology.

Yep, I’m still around. Currently doing TAF/MEK with Keytruda, which is keeping the tumor on my esophagus at bay for now, but everyone says that it’s only temporary, so waiting for the next shoe to drop. In the meantime, doing OK. Neuropathy in feet and left hand is biggest current issue, because I can’t do much walking before my feet start to throb, which severely limits your activities. To think I used to run 5 or 6 days per week. Oh well. We’ll see what comes next.