Long-term side effects for Gem/Doce ttreatment for NMIBC?

Posted by bethcamp @bethcamp, Sep 22, 2025

I had the initial six weekly Gemdoce treatments, and mostly the side effects got a little stronger each time.
After a clear cystoscopy, my doctor prescribed one treatment every four weeks for a year, with a break in the middle for a cystoscopy.

I have only had 3 treatments of this year of every four weeks, and I am experiencing worse side effects each time. Two weeks after this third one, I barely feel that the side effects are much less. They seem to get worse each time and last longer.

Has anyone else experienced this? I erroneously thought that the method of putting the chemo into the bladder would mean no systemic side effects, but not true.

I am more tired and shaky each time and two weeks after the last one, I am still very tired and shaky.

It is mostly impossible to keep up well with work and home.

Anyone else go through this?

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dianeoh26 | @dianeoh26 | 1 day ago

I just finished my first dose of just Gemzar. I did not think I would have any side effects. I was wrong, an hour after treatment. I was feeling shaky, had a headache, very tired and just overall crappy. I truly thought I would not have any side effects. At least now I know what to expect. Best of luck to you.

antonone1 | @antonone1 | 5 hours ago

I have been in the Johns Hopkins Clinical Trial since the Summer of 2024. The first 6 weeks of weekly infusions left me tired. It would take 3 to 4 days to bounce back, just in time for the next treatment. After several months I eventually got back to my regular routine by the third day. A year ago in the middle of the trial, I had a heart valve replaced unrelated to the cancer treatment,. 30 years ago in my 50's I knew that day was coming. Other than cancer ( as a result of being stationed at Camp LeJeune in the 60's) and the valve replacement (bad genetics), I am in good health, exercise regularly 5-6 times a week ( a combination of cardio, weights, walking and yoga/tai chi exercises). I am still fatigued a day of two after infusions, lost some hair (chemo or genes???). I believe that my my diet and being physically active has significantly helped my tolerating the treatment.