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Bladder Spasms

1 month 1 week ago #58765 by Alan
Don't destroy yourself over the treatments! Many have gone to 1/2, 1/3, 1/4 even 1/10 strength when the side effects become intolerable. When this first came out and even today no one actually knows what an optimal dose would be....especially in view we are all individuals responding differently. On my second round of 6, I was only able to hold maybe 30 minutes on the last 2.

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.

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1 month 1 week ago #58764 by DonaldK
All

Well, my last BCG installation was on December 4, 2019 (the day before my 56th bday).

The spasms were beyond belief both during and afterwards. I was only able to retain the BCG for about 30 mins - the nursing staff said to manage whatever I could. Doc knew I was pushing the limits on tolerating the final round based on the previous 2 weeks.

Doc finally prescribed Belladonna/Opium suppositories (on the 6th of December) to try and get a grip on the pain related to the spasms.

I also underwent acupuncture treatment - this has been amazing. Electro-stimulation of the needles at the symphisus pubis, heat lamp, and accupressure afterwards. This knocked the spasms out, but they came back the next morning with a vengeance :(

I have been continuing with weekly acupuncture treatment (out of pocket) $$$$$$

The B&O suppositories got me through the weekend after the final treatment, the insurance refused to pay but I am appealing the decision. So that has been an incredible expanse as well.

I am resolved to stay in the treatment protocol, luckily I have a big break now until my next biopsy mid February.

I hope this might help others that are struggling with the treatment and offer some suggestions as to how things might be dealt with for a successful outcome.

Thanks to all who have shared and who might share in the future.

Ciao

Hi Grade T1 CIS

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1 month 3 weeks ago - 1 month 3 weeks ago #58698 by Alan
I was one of the lucky ones. Yes, some side effects but not bad spasms but, all in all tolerable. I did try to drown myself with water to hasten the expulsion of this BCG junk. On the second round it did take a day or two to get back closer to normal.

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.

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1 month 3 weeks ago #58694 by DonaldK
Nancy

Thanks for your input

I will try the tea this week

Hi Grade T1 CIS

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1 month 3 weeks ago #58693 by Nix
The spasms are terrible. For me, heating pad help some, and sounds strange, but green tea
Ice tea help.
Keep trying all things and find what works for you

Nancy S
Ta CIS
dx Ta 11/06
dx Ta CIS 10/07

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1 month 4 weeks ago #58684 by DonaldK
All
I have begun my second round of BCG treatment. I tolerated the initiation phase pretty well, installations 5 and 6 were hell with respect to the spasms.

Today was my second installation for round two, so I only have next week until my break.

The oxybutinin is NOT helping at all :(

Does anyone have some suggestions to calm the severe bladder spasms

I don't want to drop out of the treatment (I am involved in a research study of the TICE versus TOKYO strains).

I have tried sitting in my bathtub full of hot water (last week) and a heating pad (this week).

I look forward to hearing back from some of you more experienced members.

Thanks

Hi Grade T1 CIS

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