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Long-term side effects for Gem/Doce ttreatment for NMIBC?
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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Unfortunately, we are all unique as is our response to treatments: from efficacy to (debilitating) side effects.
I was on the gem/doce treatment for high grade NMIBC. I had the similar schedule of 6 weekly treatments and then once a month for 9 months. Cystoscope after each 3 month cycle. I experienced similar side effects to what you mentioned. Relentless fatigue and brain fog…I was scheduled for another 3 month cycle but since there hasn’t been a reoccurrence of cancer the doctor left the decision up to me to take the last cycle or not. I chose not to. It has been 8 months since the last treatment and I am finally feeling less tired and able to maintain daily activities without taking long naps! We are all unique as is our response to treatments but I wanted you to know that you are not alone in how these treatments are affecting you. I pray your side effects will decrease.
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3 Reactions@deb2024
Thank you for sharing that! I was having a non-professional conversation with a radiological oncologist (not related to my care), and he wanted to weigh in on what he does in radiology in cases where chemo didn't work. He made the offhand comment that intravessical chemo had no side effects!
I straightened him out on that one. He actually seemed surprised. I was suprised at first, too. I guess it is easy to make the assumption that it won't affect the entire body.
Knowing that I am not the only one who has reacted this way to the treatments is definitely reassuring.
Many of my naps are unplanned! I can fall asleep sitting up with my computer in my lap! To keep myself safe from missing appointments (work and personal), I use my Echo device to set an alarm well ahead of anything I need to get ready for during the day, so I will awaken if I fall into an unplanned nap 😉
I hope that your energy continues to return and does so quickly and fully! Congratulations on being clear!
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1 ReactionMy experience is similar. Six BCG which didn’t work. Then 6 weekly Gem/Doc which showed no cancer at the following Cystoscopy.
Now had my second monthly maintenance dose, but am finding it harder to cope with than before. More uncomfortable and harder to hold for the 90 mins, nausea, tiredness.
I thought being only monthly instead of weekly it would be easier, but am not finding this to be the case.
Yes, I agree with your comments on your experience.
I have similar story to you, 6 weekly Gem/Doc treatments, Cystoscopy which was clear, now about to take 3rd of the monthly maintenance doses and am finding it much harder to cope with than previously.
Feeling most unwell, few days of nausea, subsequent UTI, ongoing fatigue.
@bethcamp, how are you doing? Have some of the symptoms of feeling shaky and the fatigue lessened?
@mochat
Hello again, mochat.
Finished 5 GemDoce instillations a week ago. I felt a little shaky after 4 and 5 , but it soon passed. Other than that and urgency, I've had no side-effects. For me, tiredness is a reflection of my 85 years, but I still manage to ride my bike with friends 2-3 times per week.
Best wishes.
@gemdoc25
That’s lovely news. My experience is similar to yours eg urgency etc but I recovered more quickly last time which was a complete surprise to me. I agree re tiredness, I am 82 yrs old. I was able to attend a seniors gym, go out shopping and to lunch the day following my gem doc which I had not expected to be able to do.
All the best to you xx
I am experiencing chemo brain, with a worsening after each treatment.
I just read up online and found out that there are neuropsychologists who treat chemo brain and often with ADD meds. I just messaged my doctor on their app to ask for a referral, though I don't think I need one with my insurance. I wanted to get his take on it, but I have been really struggling with brain fog.
I didn't think intravesical treatment would yield side-effects - until the treatments started. I was wrong.
@colleenyoung
Thank you for checking on me. It took me a while to see this note. I finally changed my email preference when I realized I wasn't seeing notices.
I find that each treatment leaves me more tired than the first. Otherwise, the discomfort remains about the same. I only have six left, so I can begin a countdown!
As it turns out, the lingering and most problematic side effect is chemo brain. I kept thinking I shouldn't have similar reactions to gemdoce that others have to intravenous treatments, but I was just being hopeful. I did some googling and found that treatments for ADD are often prescribed for chemo brain and I am asking my urological oncologist to recommend someone. If he doesn't, my insurance will let me choose to be seen.
Because it gets a little worse each time, and it is now beginning to affect my daily life, I am going to be proactive about it. I suppose that is the best kind of trouble to have. My exams have been clear!
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