Maintenance BCG begins ... differences

13 years 2 weeks ago #37227 by Kimberly
Replied by Kimberly on topic Maintenance BCG begins ... differences
Thanks for the info, Cynthia and Sara Anne! Turns out I had both "normal" BCG passing of clots and blood, but I also had some bleeding due to a traumatic catheterization, so I'm back on Cipro.

It's day 2 and I still don't have a lot of energy and feel hungover and headachey, but no fever and nothing that would have me running for the ER.

I was feeling a little self-pity this morning and told my husband I missed the "old me" who had energy and was raring to go. My husband pointed out that the "old me" is busy working with the BCG to keep me cancer-free. Sensible guy, that husband of mine ...

Hang in there, Mark! We will get through this!

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13 years 2 weeks ago #37216 by sara.anne
Replied by sara.anne on topic Maintenance BCG begins ... differences
Yes, the fatigue seemed to me to be worse the day after...

I was on the full dose until partway through the maintenance doses and then it was reduced to 1/3. While not fun, that seemed almost tolerable. But it is worth it since this seems to be something that can really work to keep the "beast" at bay...

Of course, now that my BCG is over, I can say all this!! Not fun, but much better than friends I have known who have had to have combination chemo for other cancers.

Sara Anne

Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
Forum Moderator

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13 years 2 weeks ago #37215 by Markq
Replied by Markq on topic Maintenance BCG begins ... differences
I just finished my first round of maintance at full strenth yesterday. First treatment I only had some burning and the 2nd and 3rd had some blood thrown in for 6-12hrs after the treatment. The worst part for me is the treatments zap my energy. It hit me hard today for some reason.

The bright side is it's keeping my cancer at bay so far and now I've got a little over 2 months off until the next checkup. If I get another all clear in June I'm going to discuss decreasing the dose of the next maintance round with my Uro.

47 yo, Ta G3
Diagnosed 11-24-10
BCG induction starting 12/17/10 followed by BCG maintance.

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13 years 2 weeks ago #37202 by Cynthia
Replied by Cynthia on topic Maintenance BCG begins ... differences
Sara Anne is completely right. When I had BCG I had prolonged bleeding and was told to always let them know if I experienced any bleeding at all. The idea is to keep on top of side effects and adjust as needed either to control the side effect through medication or reduction of BCG. Their worry was that so many people do not finish the BCG regime do to side effect that being pro active was important before it got to that point. Also they will not give BCG if there is active bleeding but I am sure you already know that.

Cynthia Kinsella
T2 g3 CIS 8/04
Clinical Trial
Chemotherapy & Radiation 10/04-12/04
Chemotherapy 3/05-5/05
BCG 9/05-1-06
RC w/umbilical Indiana pouch 5/06
Left Nephrectomy 1/09
President American Bladder Cancer Society

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13 years 2 weeks ago #37199 by sara.anne
Replied by sara.anne on topic Maintenance BCG begins ... differences
Of course you need to discuss ANYTHING that happens with BCG with your urologist. However, bleeding the day or the day after instillation is not uncommon after several doses, and is described as a side effect in the literature that your urologist probably gave you. It is something to discuss with him, but is not a "panic" issue, as would be a high fever, for example.

SA

Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
Forum Moderator

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13 years 2 weeks ago #37189 by Cynthia
Replied by Cynthia on topic Maintenance BCG begins ... differences
Kimberly if you are passing blood let your Urologist know. If need be we have seen BCG reduced to 1/10th when people have had severe reactions.

Cynthia Kinsella
T2 g3 CIS 8/04
Clinical Trial
Chemotherapy & Radiation 10/04-12/04
Chemotherapy 3/05-5/05
BCG 9/05-1-06
RC w/umbilical Indiana pouch 5/06
Left Nephrectomy 1/09
President American Bladder Cancer Society

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