gopher38

Thanks for the journal.  This will be very helpful to future people who go through this. So many steps!

I was on opdivo only for a year from 2/18 to 2/19.  We then stopped, as I was 3B and NED.  Very few side effects from opdivo.  Very mild rash, some shortness of breath, but low grade.  About 8/19, six months after stopping opdivo, they found progression and so I was supposed to start combo opdivo/yervoy, but there was a delay for various reasons, and during that time I broke out in a rash all over my torso, front and back.  Redness and horrible itching all over; unable to sleep at night.  Was worried that it would stop the combo treatment, but it went away after about three weeks.

Hello.  My last reply to this disappeared, so I’m going to try a shorter one.  I had a very similar reaction (intense rash on torso six months after stopping opdivo; much more intense than anything I experience during opdivo).  This was well before COVID reared its head.  I think immunotherapy just does what it wants, when it wants.

Very happy to hear they got you in for the TIL treatment.  Short-term pain for long-term gain.

Hello Amanda,

Thanks for posting an update.  Hoping this is successful and lasting.  I’m going to get google going and see what I can learn about this (thanks to Ed for the video too).  Would write more, but my last post on rash after opdivo disappeared into the ether.

Warren

Does this have another name than LDH?  Can you calculate it from other numbers?  After reading this discussion, I went on MyChart, and I can’t find anything called LDH on either of the two testing summaries I get after they do a blood draw/test. Is it something for which the doctor would have to do a special request?  You’d think they’d do it automatically, seeing as how I’ve been metastatic for some time.

<p style=”text-align: left;”>I know that all melanoma development is local, in the sense that if a new treatment doesn’t impact a great number of people, but you’re a complete responder to it, that’s the biggest news of all in your universe.  That said, is this the biggest thing coming down down the pipe in terms of greatest potential impact on the most people?  Seems like pd1 and ctla4 cp blockers have been the biggest to date, so introducing a third on the level (is it on that level?) would be huge.  Anything bigger in the works?</p>

Going to be tough counting the days to the 9th, but hoping this is going to be a rousing success.

Thanks for posting.  It does one good to know that there’s always “something” coming down the line.

This lag-3 sounds very positive.  More arrows in the quiver.  Thanks for sharing.

I’m going to be following this closely.  Good luck.

Damn.  Did they say why? I mean, could another tumor/site (Israel?) have more success?  That sucks.

No problem.  I’d hardly expect you to know.