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BCG treatment escalating side effects

1 week 2 days ago #57761 by frannie72
They will not reduce the dosage but they will stop the treatments completely if he develops and sustains a high fever. So far just a fever spike that lasts a few hours. Thankfully, he's done with treatment until October (a cystoscopy in early August). This last session was Tuesday of last week, so almost 2 weeks, and he is not back to normal. He is very fatigued along with the dysuria and other side effects (he also had a skin reaction to something, maybe the Uribel, and has a rash all over his torso and face)

I realize it's normal but doc says each time will be an ever prolonged recovery and it seems to be taking a toll on him. He is almost 72 and he is visibly weak and appears older. I have also read that there is a very individualized reaction to BCG but I don't know if his is worse or better than most.

In addition, the last cystoscopy a few months ago he got an infection from the clinic, caused by Klebsiella and it was nasty, took weeks to go away and he has not been the same since (to me, anyway).

The entire treatment program is 5 years (including maintenance therapy), in August it will be one year since diagnosis. I guess my concern is if he will be feeling badly several times a year into his late 70's.

He was diagnosed high grade Stage T1.

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3 weeks 5 days ago #57634 by sara.anne
This is very normal. The purpose of BCG is to stimulate the immune system so that it rejects any cancer cells from the bladder lining . As the patient has more treatments the immune system becomes more susceptible and sensitive. While this is what we want to happen sometimes the response becomes much too uncomfortable . When this happens it is possible for the urologist to reduce the dose of BCG and this does help somewhat . Some studies have shown that as little as 1/10 of the initial dose can still be effective . By the time I finished my maintenance doses I was down to 1/3 of the initial dose

Your husband should speak with his doctor about the severity of his side effects and see if a reduced dose would be appropriate . If the side effects do become too unbearable BCG can be discontinued completely particularly in a case such as your husbands where he has shown such a response to it already .

Sara Anne

Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
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3 weeks 5 days ago #57633 by frannie72
My husband has had BCG treatments since last October (diagnosed Stage 1 high grade in August) with very few side effects and now suddenly, moderate to severe side effects. Doc says side effects will intensify, the BCG has a cumulative effect. Right now, he has about 48 hours of fever, chills, bone pain, burning/passing tissue upon urination.
Pretty much out of commission for 2-3 days and apparently, will get worse. Is this "normal"? He is almost 72, I worry about the strain of the side effects on his overall health.

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