You have a lot of moving parts to your situation. I am sorry to read about the extra complications. Just be sure your team is aware of ALL your symptoms and while not life threatening they sure can be no fun. I close with what I tell myself whenever I think of my past BCG or scopes, it still beats taking chemo!
DX 5/6/2008 TAG3 papillary tumor .5 CM in size. 2 TURBS followed by 6 instillations of BCG weekly with a second round of 6 after a 6 week wait.
Stomach issues, no. Bowel Issues big time. Bladder spasms following BCG administration seem to drive the bowels. Every time there is a strong urge to urinate, there is a bowel contraction with production. Not diarrheal. This lasts for 12 to 18 hours. Accepted as part of the bladder irritation from BCG.
What's with this Bleeding ? 6/2015
DX: 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...
It was for 2 days after my initial treatment. I also have Fibromyalgia, Chronic Migraine, Severe Small Fiber Neuropathy, and Psoriatic Arthritis. There are a lot of meds involved in those (my urologist is aware); when the Fibro flares it can also incorporate IBS. This is going to be a balancing act; I work (I'm self-employed so I reduced my workweek to mom-wed and treatments on Thursday). I'll monitor for several treatments and see if there's a pattern.
Hello, Nancy! We have all been where you are now and it IS a steep learning curve! The good news is that BCG can be curative in your case....we hope it will be. I was also diagnosed with early HG (CIS), went through BCG and BCG-maintenance and am now almost 9 years out and have had no recurrences. So, you can see, it is worth it.
You didn't mention how many BCG treatments you have had, or how long after the BCG the diarrhea started/lasts.
I usually had this as one of the side effects for about a day after, but then it went away. Nerves, which are natural when you are faced with something new and scary can also contribute. Have you discussed this with your urologist?
Have you had any other side effects?
If the side effects become too burdensome, the dose of BCG can be reduced significantly. Some studies have shown that even 1/10 the initial dose can still be effective, especially if you have had a number of treatments. You might want to discuss this with your urologist if you feel that you cannot deal with this. By the time I finished my maintenance series I was on 1/3 the initial dose.
Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society