An immunotherapy question for anyone that has been on it.

GregP_WN
GregP_WN Member Posts: 742
edited August 2020 in General Cancer
Yesterday I started feeling the first of what I am thinking are my side effects. I have started feeling a lot of pain around the two tumors in my neck. I asked my doctor about this today and they say it's the immunotherapy causing irritation to the tumors because it's starting to work. Did anyone else get this feeling or bump up in pain two weeks after starting?

Comments

  • Kp2018
    Kp2018 Member Posts: 105
    edited August 2020
    I don't have any experience with this, but the reason your doctor offered would be wonderful!!
  • GregP_WN
    GregP_WN Member Posts: 742
    edited August 2020
    KP, I hope so, and from what I have researched on Merck's site, that lines up!
  • 2943
    2943 Member Posts: 94
    edited July 2020
    When my body responded, gave me a side effect..my darling doctor said that is bad news (dealing with it) and good news ( your body is using the immunotherapy to create havoc ). You know it is working. I thought of that response on my year plus on it. Even 9 months after completion, he just asked me if I was back to pre treatment. Had to think about it. I so am done that I am ignoring minor things. Some are still there. It was a way for him to know if things are still stirred up. I never had ‘pain’. Yours could be your other drug. Hang in there! Hugs!!
  • judithj
    judithj Member Posts: 26
    edited July 2020
    Was treated with Yescarta for aggressive lymphoma (after 2 chemo's failed) and have been in remission since November 2018. Treated T cells are transfused over 15 min period. They then seek out and destroy targeted cancer cells. Hospitalized for three weeks as recovery from treatment was tough on my 75 yr old body but...here I am. I am sending you nothing but encouragement!
  • LiveWithCancer
    LiveWithCancer Member Posts: 470
    edited July 2020
    I never had any side effects. I hope what you are feeling is indeed the effects of the immunotherapy beginning to work. Lungs don't have feelings ... plus, the immunotherapy only stopped my tumors from growing ... so my experience would be completely different, I am sure.
  • GregP_WN
    GregP_WN Member Posts: 742
    edited July 2020
    Yesterday, and the day before were pretty rough days, but this morning I woke up feeling like I have been for the last few weeks. Not too bad. So I went to my shop and worked there all day. I felt fine working, it's good exercise too, and everything says we should exercise to fight off fatigue, so I get plenty. At the end of the day when I came back to the house I sat down and instantly felt the pain in my neck again. I think I just put it off through the day while I was busy. I still have the pain when swallowing anything, so I just don't even want to eat anymore. It's a struggle.
  • Bug
    Bug Member Posts: 394
    edited July 2020
    So sorry about the rough days and the struggle, Greg. Is there any food or drink that soothes the pain at all? I wish you could eat something.
  • GregP_WN
    GregP_WN Member Posts: 742
    edited August 2020
    Oddly, I woke up this morning with no pain. Needed no pain meds. I worked in my shop until about 4 until it started creeping in. I came back to the house and cooked me and sweetie some dinner and had to take some pain meds. The lesion on the right that hurts when I swallow started acting up again. Overall, I'm still happy with the process. I believe what the good doctor says, that this is just a reaction to the keytruda doing its thing.

    A question Sweetie and I both have is, how do we know if the trial drug is doing anything? It could be all keytruda working, or all the trial drug, I've never understood how they know with confidence what's working without stopping one or the other.
  • 2943
    2943 Member Posts: 94
    edited August 2020
    You do not have to know! Something is bugging your body! And that should, could, probably is a good thing! During my 30 radiation treatments, I visualized Pacman( dating myself) eating nasty cancer cells. On my ‘ not feeling so spify’ days, I imagine the immunotherapy throwing swords around. I have had crusty experts dumbfounded with my descriptions but they love it. My husband told me I ‘humanized’ a few docs on this journey. We really do not have to know what is working. SOMETHING IS WORKING is what counts. We are part of the solution! Hugs!!❤️
  • Bug
    Bug Member Posts: 394
    edited July 2020
    Good descriptions, 2943.
  • Kp2018
    Kp2018 Member Posts: 105
    edited August 2020
    Greg, to answer your question, your clinical trial probably consists of several groups of patients. One group may be given only the experimental drug. Another group, only the Keytruda. Your group is receiving both.

    Just a guess, but that's how trials are usually structured.

    Thanks so much for sharing how it is affecting you. Honestly, your descriptions bring tears of joy to my eyes and a feeling of wonderment that such a treatment is available to you.
  • SandiA
    SandiA Member Posts: 14
    edited August 2020
    Hi Greg, I did have a lot of pain on the immunotherapy. Not at first but progressive. Mine was more arthritic type pain. Ended up with RA.

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