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Long term side effects for gemdoce treatment 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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You will find similar experiences on BCAN/Inspire. 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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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!