BCG side effects

7 years 5 months ago #52185 by Jfoutz
Replied by Jfoutz on topic BCG side effects
Jack,

Thanks for the response. The doctor just said we would wait and see if any tumors show up in 3 months. My symptoms were not that bad so I'm thinking I need to continue. There is really nothing else with this high grade than bladder removal, so I had rather take my chances with the BCG and hope it's not the reactive arthritis. My local urologist didn't even mention doing the BCG so I headed to a NIC hospital. Now this. Eek!

I sure hope you can keep your CIS at bay. Do you have any other options than BCG?

Janice

4/16 hematuria
5/16 TURBT HG Tumor 2.5cm
8/16 BCG X 6
10/16 cysto NED

Hematuria 4/2016
TURBT 5/2016
BCGx6 7/2016
Reoccurrence & TURBT 2/2017
BCGx6 4/2017
BCGx3 7/2017
TURBT 10/2017
Gemcitabine X6 12/2017
Cytology negative 4/2018
Cytology negative 8/2018

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7 years 5 months ago #52184 by Jack R
Replied by Jack R on topic BCG side effects
Janice,

WOW. Something else to watch for; I had not ever seen this listed as a possible side effect, but a quick search shows lots of reports from reliable sources. I list one below from the National Institutes of Health - note this article is NOT NIH research, but is cited by NIH.

Does the doctor have another course of action - one of the other drugs to follow up with ? I am into longer term BCG trying to tame recurrent CIS and would hard pressed to quit without an alternative. What a choice to have to make.

The article mentions treatment for conjunctivitis. This is the area for an Ophtalmologist.

Best
Jack

www.ncbi.nlm.nih.gov/pmc/articles/PMC3441015/

6/2015 HG Papillary & CIS
3 Years and 30 BCG/BCG+Inf
Tis CIS comes back.
BC clear as of 5/17 !
RCC found in my one & only kidney 10/17
Begin Chemo; Cisplatin and Gemzar
8/18 begin Chemo# 3
Begin year 4 with cis
2/19 Chemo #4
9/19 NED again :)
1/2020 CIS is back
Tried Keytruda, stopped by side effects
Workin on a new plan for 2021

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7 years 5 months ago #52182 by Jfoutz
Replied by Jfoutz on topic BCG side effects
Just had my second cysto after TURBT and 6 BCG treatments. I had some bone pain and conjuvitius which is a rare side effect called reactive arthritis so the doctor does not want me to do the maintenance BCG. He said he would if I insisted but he thought we should wait. I had high grade cancer so I'm really nervous to quit the treatments. Anyone have any thoughts on this? I'm not really sure my symptoms are that since I haven't been tested, so I'm in a quandary what to do. So happy I didn't have a reoccurrence though.

Janice

Hematuria 4/2016
TURBT 5/2016
BCGx6 7/2016
Reoccurrence & TURBT 2/2017
BCGx6 4/2017
BCGx3 7/2017
TURBT 10/2017
Gemcitabine X6 12/2017
Cytology negative 4/2018
Cytology negative 8/2018
The following user(s) said Thank You: Jack R

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7 years 5 months ago #52134 by sara.anne
Replied by sara.anne on topic BCG side effects
So sorry to hear that yours keeps coming back. Has your urologist suggested BCG? I would sincerely recommend that you get a second opinion on your treatment. Recurring tumors can lead to a very bad situation. You need to find a place for a second opinion that sees a LOT of bladder cancer cases, including complicated ones such as yours has become.

If you let us know where you live, others here on the Forum may have some suggestions for you. This is not something to ignore.

Sara Anne

Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
Forum Moderator

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7 years 5 months ago #52131 by girlygirl121945
Replied by girlygirl121945 on topic BCG side effects
I was diagnosed with bladder cancer at 44 it went misdiagnosed for a long time the doctor assumed it was just a UTI until they finally ran some tests I have low grade tumors and they keep reoccurring I have had seven turbt and have had that chemo treatment I keep getting awful UTI symptoms from it

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7 years 6 months ago #51936 by DougG
Replied by DougG on topic BCG side effects
Trish,
Be sure to talk to your doctor about your fevers associated with the BCG.
Best wishes,
Anita

Anita
Forum Moderator
Caregiver

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