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Biopsy back - BCG here I come!

4 months 1 week ago #58937 by NelsJenn
I have hade two TURBT and nine BCG infusions. My urgency and urination pain started with my eighth BCG infusion. I urinated often with hardly any urinate coming out. Plus, urination was painful. My urologist gave me a three month rest from treatment so that my bladder can heal. I am in the middle of this rest, and hydrating a lot. My urination was improved, both urgency and pain has subsided and my normal urination is coming back slowly. I attribute this healing to hydrating myself regularly with water.

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4 months 1 week ago - 3 months 3 weeks ago #58930 by Shacky73
Thanks Jack! Great suggestion. Sometimes I think like a lawyer - want to know answer before I ask question.

I know exactly what you mean by it’s worse when there is little volume. It kills!

My primary prescribed trazadone. But I’ll need to be prepared for incontinence. Will try it this weekend.

T1 Grade 3 with CIS

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4 months 1 week ago #58928 by Jack R
Shacky73

Sorry to hear that you have joined the BCG irritated bladder club.We can't expect to pour all the drugs into the bladder without having it revolt. I envy the peeps who get through BCG etc with no symptoms. For the last year i'm up every 2 1/2 hours, at times 30 minutes.

Watching what I drink and eat makes a difference - sometimes. Pyridium helps, as of warm compresses over the bladder. Sleeping on back is better than on side. My bladder appreciates coffee and gatorade, says no to milk and fizzy stuff. The frequent trips to the toilet are worse for me when ther is almost NO output, just the urgency - so I try to stay well hydrated - I find that helps particularly if there is any bleeding. Short term use of heavier drugs can do wonders for the worst times, but real caution is needed.

Taking time off if you can is a good idea. You dont want to fall asleep driving home from work, or at your workstation - being fuzzy at work from lack of sleep is a bad idea.

Can you talk to HR at work and learn about the disability plan ? Find out what is covered, for how long, how soon it kicks in, doctor reporting requirements, etc. Otherwise can you set up BCG an take a couple of days off to make a 4 day weekend for each of 6 or so weeks ?

Hang in there.

Best
Jack

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...

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4 months 1 week ago - 4 months 1 week ago #58926 by Shacky73
Met with Dr. Bochner as follow up to biopsies on 1/10. CIS still present. BCG indicated.

Signing up for Tokyo Prime trial and hope to start in 2 weeks!!!

Biopsy shows chronic cystitis. That’s why I have such frequency urgency and pain.

He said it’s going to get worse with BCG.

I’m having so much trouble already with lack of sleep we talked about taking time off work. He said he can write letter but can’t guarantee my company will approve.

I have private disability insurance with my company. I here others say the company would prefer I go on disability for more than 1 week off. Then my salary comes from insurance instead of the business units expense.

Anyone have experience with private disability?

T1 Grade 3 with CIS

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