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

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Profile picture for lacks @lacks

Had my third monthly treatment yesterday. My experience is very similar to yours. I thought it would be much easier just having a monthly treatment, but that has not been the case.
I also read and another comment about shaking, which I am also experiencing. I decided just to let that go for a while.
I have my six month cystoscopy in two weeks.
I also read another comment or a doctor says we shouldn’t have any systemic side effects from this treatment, but that is simply not true in my case. This medication does not seem to just impact the bladder.
I’m happy to have connected with some folks on this same crazy journey.

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Replies to "Had my third monthly treatment yesterday. My experience is very similar to yours. I thought it..."

@lacks Yes I think our doctor thinks we are making things up or something. Because they never seem to be concerned about the side effects. So far they have been: fatigue, heavy legs, lethargy, Raynaud's flare, arm and leg weakness when trying to do routine things around the house, bladder spasms, stinging with urination, brain fog (chemo brain) and yesterday anger. My spouse is a very calm easy going person, but yesterday afternoon there was a lot of anger to the point where they said they were angry and didn't know why and were going to bed. This morning I asked how they were feeling and they said better, but these drugs are messing with them and they felt almost bipolar yesterday. We have 2 more treatments to go and I feel like each week brings a new side effect and worsening of the other side effects. I also thought there would be no issues outside of bladder discomfort and stinging on urination. I have mentioned twice to the doctor/PA about maybe there is something they could take for the stinging and the getting up at night multiple times -- so far it just seems to be "yep, this is the way it is." ANd they just stand there and look at me like I have three heads or something. I'm glad to hear we are not the only ones going through this, because it does help to have others who understand. Lord knows the friends and family don't understand!