snoe
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snoe

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      • February 27, 2021 at 6:06 pm
      snoe
      Participant

      When Melanoma does form a lump under the skin is it like a 1 cm type hard hard mobile lump?

      Hard and semi-mobile would be a good description of the palpable tumors I’ve had. I say semi-mobile because they won’t move far, and won’t stay there – they pop back in place. Generally I have noticed them when they’re bigger than 1cm!

      I’d second Cindy’s advice to let the doctor know. When I’ve informed my oncologist there were new lumps he had me get a PET right away. Good luck and hang in there.

      • January 12, 2021 at 8:07 pm
      snoe
      Participant
      My anecdotal opinion is that the Braf/Mek drugs haven’t “felt like they’re working” in the way immunotherapy drugs have, with discomfort/inflammation at the sites of tumors. (That was my experience, anyway.) I was “lucky” to have several palpable tumors, and the targeted therapies did seem to be effective very quickly once I started them.

      I have gotten noticeable side effects from the Braf/Mek drugs I’ve taken within the first two weeks, but I don’t think that’s necessarily a gauge of effectiveness?

      Now that my palpable tumors are gone, I know how frustrating it is to not know what’s going on inside. 🙁

       

       

      • August 12, 2020 at 4:05 pm
      snoe
      Participant
      I did ipi/nivo starting in March. (My oncologist alternated between ipi+nivo and nivo alone — coronavirus concerns.)

      About a month ago I noticed a new lump on my neck. We did a PET scan and I have two new, large-ish tumors. On the upside, my original tumors either shrank substantially or disappeared altogether. But the new growth is a big concern.

      My oncologist thought it would be worth combining an immunotherapy with BRAF targeting drugs. (I don’t know if that’s an option for your husband.) I saw a melanoma specialist yesterday for a second opinion and he agreed.

      So I would communicate to your oncologist ASAP, and don’t lose hope — the drugs may be working, just not perfectly, and there are other things to try!

      • April 4, 2020 at 5:32 pm
      snoe
      Participant
      I too am stage 4 with palpable tumors — one on my chest and one on my back. Both began shrinking within a week of my first ipi/nivo treatment. It’s quite dramatic.

      I consulted a radiation doctor for tumors in my brain, and he said the shrinkage in palpable tumors is a) a good thing because it means tumors are shrinking (duh) and b) nice because it provides a concrete sign of the drugs’ effectiveness between scans. So maybe look at it that way?

      • November 25, 2020 at 6:29 pm
      snoe
      Participant
      Thank you! I will ask my oncologist about using ibuprofen.

      It’s nice to hear from other people getting the shivering and shakes. They’ve started up over the past 48 hours and it is pretty unpleasant. But I can manage.

      • November 25, 2020 at 6:21 pm
      snoe
      Participant
      Thank you, Sandy! I too have the shaking chills. (They went away, along with the fevers, right after I posted this, then returned just a few days ago — I’m guessing due to my first immunotherapy infusion.)

      I think trying to manage as best I can is the way to go, at least for now.

      • November 25, 2020 at 6:16 pm
      snoe
      Participant
      Thank you! I will look at encorafenib-binimetinib as an option if I need to change. Sounds like they have lower toxicity.
      • April 4, 2020 at 5:23 pm
      snoe
      Participant
      Hi! Just had this happen to me during an infusion— facial flushing/heat, chest tightened, then intense physical pain in my lower back. Very scary. Eventually resumed the infusion at a slower rate — the pain returned at lower intensity but we kept it up to finish.

      It was my first time on 3 mg/kg nivo — I had been on ipi/nivo before with no reaction, but the nivo dose was 1 mg/kg. (My doctor made the change because of reports out of China that patients on ipi/nivo did worse if they contracted covid than nivo alone patients.)

      What I found interesting is that the chemo nurses/PAs who dealt with me seemed unaware that people have this reaction to nivo infusions. From what I’ve read, it’s rare but not unknown. It’s good to read that I’m not alone/making it up. 🙂

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