Durvalumab Immunotherapy

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After my 6th Durvalumab infusion (6 out of twelve) developed pneumonitis and my infusion had to be postponed. A round of steroids cured that problem.

Just as I was to get the rescheduled infusion i contracted SEVERE,UNBEARABLE itching all over my body. Oddly enough, NO rash.It is MUCH worse at night and in the morning.It is EXCRUCIATNG.....My Primary Care Physician and Oncology team are working together to try to resolve this but NOTHING has helped!! Have tried antihistamines, all kinds of lotions and creams both prescription as well as over the counter. My doctors are at a loss because they're NEVER encountered this problem! If ANYONE has had this problem and can give me ANY advice PLEASE, PLEASE contact me!!!! As can be expected,my infusions are at a standstill....I'm also worried about that. Oncologist says they must be postponed so I have some kind of quality of life in case it is in fact, the Durvalumab causing this...

THANK YOU!!!!

chellesimo 6 months ago

Hi savannah I haven’t had the same treatment as you, but just wanted to pop on as you haven’t had any replies yet. The itching sounds awful! As you said it is worse at night and in the morning, I wonder if it is worse when you are hot?

I really hope this stops soon for you, sorry I cannot give any helpful advice.

Chelle

Try to be a rainbow,in somebody else's cloud

Maya Angelou

Big bird 50 6 months ago

I am on the same treatment and have not experienced this but I do find anything antibacterial a big problem. We only use non bio washing products and that helps. Hope they get to the bottom of it soon.

StevePr 6 months ago

Hi Savannah,

Oh dear, what a dreadful situation. I know, I've been there. (Pembrolizumab)

First off, know the enemy. Counter-intuitively it is not the Durvalumab, it's actually your own immune system. The good bit of immunotherapy is that it allows the immune system to attack the cancer but the bad bit is that your immune system now feels free to attack other things that it should leave alone. You need to look for triggers that kick the immune system into action - specifically on your skin. And then remove them.

Washing products and toiletries.
Laundry products.
Clothing, towels, bed linen, anything else that touches you.
I know that comes across as OTT but we can narrow things down a bit...

"All over" you say - great, that's actually a big clue and a good start.

Under-arm deodorant is probably okay cos you're not using that all over.

Don't have an itchy scalp? That means your shampoo is probably okay too. (It makes a great shower gel substitute, I now use baby shampoo for my shower.)

Skip the fabric softener in the laundry, wash it more often and without detergent. Add an extra rinse cycle if you can.

As for clothing etc, almost certainly it'll really be laundry products. I went OTT and went with pure cotton all the way but that may not have been necessary (I was just desperate.)

The target is to reach a non-itchy state ASAP and then re-introduce things one at a time to find the culprit(s). "All over" makes laundry products the prime suspects - they get into clothes, towels, bedding, the lot.

Hope this helps.

kind regards
Steve

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