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Old Fri Apr 29, 2011, 03:47 PM
Marlene Marlene is offline
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Join Date: Oct 2006
Location: Springfield, VA
Posts: 1,406
John's bladder bled for six months from the cytoxan. It was very severe bleeding also. Lots of red cells were needed daily. Have they checked to make sure there is no infection present? John's urine culture came back as positive for the BK virus for which there is no effective medicine for it. They wanted to do a procedure that would basically cauterize the bladder but John said absolutely not because of long term problems as a result of the procedure. They basically thought that once his white cells were higher, the bladder would heal properly.

They usually hydrate you with IV fluids to flush the bladder which helps it heal. Didn't work for John though. So they did constant bladder irrigation (CBI). If you can avoid that, do. John's blood clots were preventing him from urinating so they had to intervene. He did that for three months and then we were able to stop that procedure but he continued to pass blood and clots for an additional three months. He would have to lay on his side to urinate if clot got in the way and blocked the flow. He would have stood on head if needed .

What was helpful was eating cranberries. We stumbled upon this accidentally. Cranberries were in season and I was baking and cooking with them, made a cranberry chutney for Thanksgiving, etc. He was eating them almost daily for about 3 weeks. If you don't have access to cranberries, there's a supplement called D-Mannose. It is basically a sugar, which does not effect blood sugar, which is the same component in the cranberries responsible for positive effect on the bladder. It's easy to take and should not have any impact on any med or treatment.

Most use cranberries & blueberries, or d-mannose for urinary tract infections.

I understand your alarm. It's pretty shocking to see that much blood in the urine.
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Marlene, wife to John DX w/SAA April 2002, Stable partial remission; Treated with High Dose Cytoxan, Johns Hopkins, June 2002. Final phlebotomy 11/2016. As of July 2021 HGB 12.0, WBC 4.70/ANC 3.85, Plts 110K.
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