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

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.

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.

@dallio
I am almost finished with my gemdoce treatments. I have five more to go, at once per month. I first had six weeks of once per week, then a break and cystoscopy, and then once per month except for the sixth month, which was another cystoscopy.
Don't believe that there should be no side effects from those treatments. Yes, it does end up with some systemic symptoms. My hair isn't falling out, but it got a bit thinner. Tiredness is the major symptom that I have now, and even at only once per month, I stay tired all the time. I just begin noticing that I am doing a bit better when it is time for another one. However, it is still much less invasive than intravenous would be. It seems to be working, and it will be over in five months. When you do it on a regular basis, you learn how to deal with it. I am at the office for the first dose and it is held for 90 minutes. Then I get the second drug, and I get dressed and drive myself home (hoping not to hit any large potholes or get rear-ended!). I set a timer when I get home for the proper time to release it. I keep myself occupied either with TV or my iPad (to finish the feel good movie I began at the doctor's office). It isn't horrible and it isn't pleasant - however, it does seem to be working, which is the only measurement that really counts to me.

@mochat We each respond differently to gemdoce. Sometimes I (not really) wish that my hair had fallen out because when I get too tired to participate in something, etc., and explain that it is from chemo, some people look at me like I am making something up. I finally realized that it is because I still have my hair! I am glad that I still have it, but it can get frustrating. Chemo brain is my main problem in all of this.

@gemdoc25
is that four per week or four weeks of once per week? I know each of us gets different timing, and there are protocols based upon the stage of cancer, age, etc.

Good luck. Find something to keep yourself occupied while you are having the treatments. I download movies to my ipad - that make me laugh or at least smile. It helps the time to pass. I drive myself home in the second part of the treatment.

@deb2024
Thank you for posting how much time it took to feel less tired. It helps to have some idea of how to plan my time after this is finally completed (in July!). I am told by other cancer survivors that it took them about a year to get their brains back.

For me, the two worst side-effects are tiredness and some chemo-brain. I always use an appointment calendar, but it has become much more important these days. I have learned how to space out things that take energy, give up on some things, say no frequently, etc. I get reminded that it is't forever!

Whilst I hate having to have the GemDoc treatments, I have found I am coping with them much better than at first.
I used to feel nauseous and tired, but this now only lasts for the day of treatment. I am fine the next day….except for large amounts of hair loss.
Seems everyone is different.

@bethcamp
My follow-up urinalysis showed no cancer cells, by the way.
The maintenance treatment is once very 4 weeks for a year with cystoscopy every 3 months. I had my second session on Friday with no after-effects, aside from feeling very slightly nauseous for a couple of hours. In fact I rode my bike 12 miles yesterday and 36 miles today. I feel pretty good although I've had a couple of episodes of urgency. Thank you Depends!!
During the instillations I have a TV in the room, but never use it, but, like you, I take my iPad. I wait an hour in the room with the second infusion, pee it out then drive 40 miles home.

@dallio, any update? What did pathology show and what treatment plan was recommended? How are you doing?