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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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@gemdoc25
Hi Gemdoc25,
So happy for your Cystoscopy result. I have just finished 5 monthly gem/doc treatments, and having a Blue Light Cystoscopy next week. Fingers crossed.
All the best to you 😊
@mochat, just checking in. How did your cystoscopy go? How are you doing?
I'm very confused. DR called 1 week after tumor removal saying there are abnormal cells but no cancer. I was in the room during my husband's initial cystoscopy and the Dr said "there's the cancer" while the nurse was nodding her head. He is sending it for a second opinion. I don't think even he believes the preliminary report. My husband was exposed to agent orange during the Vietnam war where he also lost his leg. The article stated those exposed that get bladder cancer has an atypical appearance in bladder cancer cells as opposed to those who were not exposed. Now I'm even more worried thinking of misinterpretation of the pathology report. What to do?
@mochat hi, I heard due to the unavailability of BCG they are using Gem/Doce. This totally sucks as it's a chemo combo where BCG is not. We were told that would be our treatment. My husband goes to the VA . So the government can't get this non-chemo agent? Ridiculous. Is this what happened in your case. And I agree being injected into the bladder it should not have any systemic effects. Should be the same as HRT suppositories which I am on. I'll try to find some answers for you?
@dallio hi again I just read it causes severe inflammation of the already irritated bladder wall and due the time of 90-120 minutes of time for each dose it can cause "leaking" through the bladder wall. So in my opinion if the first dose causes severe inflammation the second third and subsequent does a week apart are being injected into an already irritated inflamed bladder. The bladder wall never gets a chance to recover before they giving you another dose. I hope this helps. Hugs
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1 ReactionHi, had the Blue Light Cystoscopy and it only showed some inflammation, so doc took 2 biopsies. I will hear the results next week.
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1 Reaction@dallio
Hi, I did not have any success with BCG so that’s why I was put on GemDoc, once a month for 5 weeks and just had a Blue Light Cystoscopy which showed some inflammation. 2 biopsies were taken and I will hear this week what the results are.
I have just read on another comment that GemDoc can cause inflammation. Also although there should be no usual chemo reactions I have found I am loosing a lot of hair.
I hated the GemDoc treatments but recovered quite quickly from them.
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1 Reaction@dallio
Hello Dallio, I am a 78 year old VN veteran. I receive gem/doce treatments at VA for NIMBC due to exposure to Agent Orange. To date I have received the initial 6 treatments and just completed my 6th maintenance treatment. In between I had one additional surgery for a suspected growth that turned out to be nothing. Other than that I have experienced very little problem or inconvenience.
Yes, getting 2 doses each visit is annoying but over time I've gotten used to it, and VA provides medication to help those problems. My main problem has been fatigue, especially the day of treatment but after a nap, I'm fine. There are several other issues of concern with bladder cancer to deal with whether or not the treatment is with bcg or gem/doce. I hope this helps.
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1 Reaction@donchaz2u Thanks for your response and your service. Still waiting for pathology. Hopefully this week. I heard gem/doce can leak through the lining of the bladder into the blood system and cause symptoms similar to getting IV chemo. Knowing you did not get those side effects is reassuring.
I'm on my third maintenance and I agree with you on leak through lining of bladder. I have experienced symptoms of IV chemo, tired all the time and hair is thinning. Just feel like crap. Sorry I hope everything works well for you.