immunotherapy and itching - does it stop when the treatment stops?

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Hi there,

I'm on ipilimumab and nivolumab, made it through 2 of the initial double drug doses and itching like hell.

I've used the really helpful threads on here about how to handle that and spoken lots with the oncology team and nurses - so on 180mg antihistamine and diprobase. That makes it manageable.

But what I'd love to hear about is does anyone have experience to share of it stopping/lessening either when you drop down to just one drug (nivolumab for me) or once you stop the whole immunotherapy thing at the end? I know if I ask the docs they will say things like probably/maybe/sometimes etc etc, so looking for some personal stories!

Thank you.

Best,

Susie

  •  

    Hi Susie

    Whilst I don't have the experience with itchiness on immunotherapy, I can empathise as I've developed a rash on my chest whilst having radiotherapy for breast cancer. In my case, the radiotherapist has prescribed me some hydrocortisone cream which I've been applying for nearly a week now and the rash seems to be going.

    Hopefully, your itchiness will disappear soon too.

    x

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  • Hello Im new to the group, but this caught my eye. Here is a post I typed on a FB forum. I am still searching for answers, & it is getting progressively worse: 

    I was diagnosed with stage 4 melanoma June 2022, & was sent home for palliative care. Thankfully I have regained my strength, resumed immunotherapy and the cancer is for now, under control.
    I am on opdivo, and would like to know if anyone else has had tingling as a side affect.
    Its not painful, but it is overwhelming especially when its in my head and body at the same time. It tends to get active when I'm hot, for example when I am in the bath, or tend to sweat. I cannot run, or do a light work out without the tingling sensation, it's like being bitten by hundreds of jellyfish.
    Is anyone else suffering from these symptoms, and if so do you have any advice please?
  • Hi, I replied below, not sure if you'll get a notification because i replied to latchbrook

  • Hi Jez,

    I've just seen your reply. I don't have any experience of tingling though I'm afraid.

    The itchiness has been got under better control with aqeous menthol cream and a very high dose of fexofenadine antihistamine.

    I'm sorry to hear about your horrible sensations!

    Maybe start a new thread to see if anyone replies about that specifically?

    Best,

    Susie

  • Hi Latchbrook,

    Sorry I didn't reply as my situation is different - I itch all over my body. This is an immunotherapy side effect which is different from rash (although I also have that). I was looking for very specific help with the itch. The itch is apparently not likely to just go.

    Ironically enough, since then, I've also got the rash back too and am using hydrocortisone to control it in its limited area.

    But I can share, in case it is useful to you, that eventually I found out you can get them to prescribe you aqeous menthol cream which is very effective for me for the itching. It's just fantastic.

    What a complicated and varied business this whole cancer treatment thing is!

    Thanks for your sharing.

  • Hi   

    Thankfully my itchy rash has completely gone and I hope your itchiness will go too.

    x

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     "Never regret a day in your life, good days give you happiness, bad days give you experience"