Itchiness After Immunotherapy

Posted by treeman1942 @treeman1942, May 28, 2024

I was diagnosed with bladder cancer about four months ago at the Rochester Mayo Clinic. I've now had my second amino therapy treatment and have been experiencing extreme itchiness. I'll be calling my doctor today in the hope they will issue a prescription for this, however, I'm wondering if anyone else has had this issue and how they solved it.

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I still have no discernible rash or itch except for a few spots. I had some in an elbow on Wednesday but it went away. My leg bag is creating some rash and blisters. rash around my urostomy has also increased noticeably. Today the fatigue is very pronounced. I had trouble not falling asleep at work this morning. And the shoulder and back pain is intermittent but low grade so far.

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Profile picture for tanya @hmmm

The castor oil didn't work too well, unfortunately.

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Castor oil did not work for me either, so far icing and elevation of my feet and hands has worked, but I spend the day on the couch. When the itch settles down I get up and preform a task until the itch takes over again. Hoping this itch settles down soon!

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The urologist gave me a prescription for low dosage prednisone for 7 days. It helped to get rid of the itching and the hives on the back of my head. I go for my second immunotherapy on the 16th, 2 weeks late. I hope I don't have the reaction every time.

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Hopefully your infusion was successful this past Friday.

I rarely have itching. But this morning I had skin coming off my chest after my shower. Weird. No redness. My stoma site had some acne again and a tiny sore also. Hard to say if all this is nivo related or not. My skin remains very dry compared to before nivo.

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Profile picture for jaxfl @jaxfl

Hopefully your infusion was successful this past Friday.

I rarely have itching. But this morning I had skin coming off my chest after my shower. Weird. No redness. My stoma site had some acne again and a tiny sore also. Hard to say if all this is nivo related or not. My skin remains very dry compared to before nivo.

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Today I am experiencing significant fatigue and some nausea. Plus intermittent back pain. Weird. I was doing great Saturday. I probably did too much weeding and cleaning up. Plus some drywall repairs in the house. We moved in in October.

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Profile picture for jaxfl @jaxfl

Today I am experiencing significant fatigue and some nausea. Plus intermittent back pain. Weird. I was doing great Saturday. I probably did too much weeding and cleaning up. Plus some drywall repairs in the house. We moved in in October.

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Hope you feel better. How many months have you been on your immunotherapy?

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Nivo 1 was 2025-04-03. Nivo 2 was 2025-05-01. This morning I was exceedingly tired and had trouble staying awake whilst driving to work. It is a little better after lunch. Part of it is a full-time return to the office.

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I also used to have a urostomy bag last a couple of days. Nowadays it is usually only a day. Ever since I started supplementation with BCM-588, Akkermansia, camu camu and physicians choice 60 billion, my stoma produces a lot more mucus. That is indicative of akkermansia taking hold. Which is good as it is linked to better nivolumab efficacy. But I will have to come out of pocket for more bags. https://pmc.ncbi.nlm.nih.gov/articles/PMC6064808/.

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Profile picture for jaxfl @jaxfl

Nivo 1 was 2025-04-03. Nivo 2 was 2025-05-01. This morning I was exceedingly tired and had trouble staying awake whilst driving to work. It is a little better after lunch. Part of it is a full-time return to the office.

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I'm doing a year of it (fingers crossed). I'm almost six months into it now. Are you scheduled for a year as well, if all goes as planned? I'm able to work from home 4 of 5 days a week. That certainly helps. You’re right, going to the office likely adds to your fatigue.

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The plan is a year. That is the standard for adjuvant therapy to aid in recurrence prevention by eradicating MRD hopefully. Avelumab and pembrolizumab are typically two years. But checkmate 274 showed great results with just one year. And atezolizumab is rarely used anymore for MIBC.

Today my fatigue was less severe. However, after lunch at a farm to table restaurant I have experienced some severe stomach aches. But no diarrhea so far surprisingly. Also some abdominal discomfort reminiscent of previous AKIs/UTIs but hopefully it is just a bad meal.

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