gopher38
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gopher38

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      • August 12, 2021 at 3:22 pm
      gopher38
      Participant
      Thanks for the journal.  This will be very helpful to future people who go through this. So many steps!
      • July 22, 2021 at 10:05 am
      gopher38
      Participant
      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.
      • July 21, 2021 at 10:05 pm
      gopher38
      Participant
      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.
      • July 21, 2021 at 9:42 pm
      gopher38
      Participant
      Very happy to hear they got you in for the TIL treatment.  Short-term pain for long-term gain.
      • July 21, 2021 at 9:29 pm
      gopher38
      Participant
      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

      • June 30, 2021 at 7:01 pm
      gopher38
      Participant
      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.
      • June 7, 2021 at 9:51 pm
      gopher38
      Participant
      <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>
      • June 2, 2021 at 4:48 pm
      gopher38
      Participant
      Going to be tough counting the days to the 9th, but hoping this is going to be a rousing success.
      • June 2, 2021 at 9:35 am
      gopher38
      Participant
      I frickin hate my insurance.  My HR person always tells me, “oh, we have a great insurance plan”. Maybe so in theory, but I had my first PET scan rejected for no apparent reason, and it took me literally months to get it reversed.  Then genetic testing was rejected, and it took me months to get it reversed. Now this. This better not take months.
      • May 31, 2021 at 11:10 am
      gopher38
      Participant
      Thanks for posting.  It does one good to know that there’s always “something” coming down the line.
      • May 24, 2021 at 11:04 am
      gopher38
      Participant
      This lag-3 sounds very positive.  More arrows in the quiver.  Thanks for sharing.
      • May 7, 2021 at 4:27 pm
      gopher38
      Participant
      I’m going to be following this closely.  Good luck.
      • June 29, 2021 at 12:39 pm
      gopher38
      Participant
      Damn.  Did they say why? I mean, could another tumor/site (Israel?) have more success?  That sucks.
      • June 2, 2021 at 4:29 pm
      gopher38
      Participant
      Thanks.  That whole presentation is interesting.  I don’t get all the details, but it’s clear that there’s a lot of things being worked on, many of which are – if not always around the corner (although it sounds like some are pretty close) – also not decades down the road.
      • April 26, 2021 at 4:12 pm
      gopher38
      Participant
      No problem.  I’d hardly expect you to know.
Viewing 11 reply threads
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