guynamedbilly

I have read stories like that, but like you, I wouldn’t accept that answer without pressing some.

Definitely see a melanoma specialist if you aren’t. I’ve had great experiences with MDANDERSON.

Without knowing specifics of his reaction, there are possibilities to use novel treatments to reduce the side effects. I received Tocilizumab a few times along with my immunotherapy combo to allow me to get a few more doses before the insurance said don’t do that anymore. You could ask about something like that.

It has happened to me a few times. I was on the NKTR trial a few years ago. I was on it for about 8 months and I realized that my thinking was affected, but it wasn’t until I’d been off of it for about 2 months that I realized I didn’t remember most of the first four months of the trial.

I’ve had times where I knew my thinking wasn’t reliable, so I intentionally avoided making important decisions during that. You just have to keep in mind that these are systemic meds, so they have wide ranging possible effects. Usually it’s minor or nonexistent side effects. I’ve never had anything like that on IPI or NIVO.

Awesome update. 1 Year clear myself

You can see lymph nodes on CT scans as well.  Pet scans are more expensive, so more often denied by insurance.  It’s my understanding that the Pet makes it easier to see generally what is going on internally, while the CT let’s you see specifically what is going on.  Meaning, it’s harder to miss something on a Pet scan.

Not exactly an expert though, as my insurance hasn’t approved a pet scan since 2017.

I have done the full 4 cycles of Ipi/Nivo 3 times so far, and a 4th is a possibility that my Dr has talked about.  My tumors seem to respond to the Ipi, but then after switching to a maintenance Nivo, they slowly creep back in.  It’s never made me NED, but it’s worked at keeping things mostly stable so far.

I don’t think the side effects got worse each time, especially since they are coming up with different ways to manage them.  So far, the trifecta of Ipi/Nivo/Tocilizumab has worked best for me.  Toci is an anti-inflammatory used to treat Rheumatoid Arthritis, but it was also extremely effective at stopping side effects for me.  I know there are other anti-inflammatory drugs they are trying too.

Thanks for the write up.  I’ve been stuck in TIL limbo for over a year so I wonder if you’re willing to share which hospital did it.  I had cells harvested and everything lined up at MDAnderson, but then they put their til program on pause.

I was one of the rats in this case, received Nivo+Ipi+Toci last year, but not as a trial.  I had received the toci to manage the effects of another trial, but continued it into nivo+ipi coming off of that.  I think my doctor might have made a unique maneuver with the insurance for them to approve it, because they refused to continue after the first or second dose lol.  I have some residual brain fog from that trial so pardon me if the timeline is off, but the trio worked very well for me.  I didn’t develop colitis except maybe a little towards the end, where when I was on ipi+nivo previously I had to be hospitalized for severe duodenitis.

Good luck.  It causes a lot of people problems, but sometimes it don’t.  I have completed the full four doses a couple of different times.  Only developed colitis towards the end of the last time.

Thank Celest and Ed, that’s kind of what I was finding too.  Lots of enthusiasm about investment in their vaccine, not a whole lot regarding efficacy.  My brother had suggested I look into it, but there wasn’t much info.  Hopefully it does end up being useful in combination with just the right cocktail.

Ouch Cel, that’s a heck of a souvenir.  I guess it’s semi-permanent now since it’s been so long?  Hopefully not.  I’ve been extremely lucky with side effect, etc, response not being too bad.  From radiation to injections and biopsies, almost none of it’s given me the permanent problems that were predicted..  The immunotherapy did turn my skin and hair white and grey. Small price.  Even the 2nd covid vaccine shot everyone complained about, I didn’t feel it the next day.

Anyways, enough of a tangent for now.  Thanks for the info.

Thank you for the write up.  I read it this morning.  It’s reassuring that there’s so fast r&d in cancer treatment going on.

I wonder do you know if there was much info about the mrna cancer “vaccines” in the conference?  I was reading a little about the BioNTech one because a nearby hospital is participating.  Patient outcome information might be too new to have been there.

https://www.precisionvaccinations.com/2021/06/18/mrna-melanoma-vaccine-candidate-launches-phase-2-study

Wow that would be a scary response.  Never heard of one that extreme to Nivo.  I assume they will be holding off on treatments for a while, but hopefully the Doctor looks into what caused it more.  Good luck.

I have. I’ve got sections of hyper pigmentation on my elbows, and right after that developed loss of pigmentation on my forearms. It looked really freaky at first, but both have kind of mellowed out after a while, or I’ve just gotten used to it.

I’m 35. Because of the immunotherapy my eyebrows, eyelashes, most of my facial hair and about a third of my body hair has turned white. My scalp still has some dark hair, but it’s definitely grayed a lot too. If you are doing immunotherapy they view this as a good sign that your body is responding to treatment.