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BCG shortage again and lack of surveys?

3 years 9 months ago #48415 by lindaofsb
Thanks Sara. My clinic got some BCG this afternoon. I plan to follow up on the topic because clearly they haven't solved the long term problem.

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3 years 9 months ago #48413 by sara.anne
Our search function is back working If you go to "search forum" at the top of this page and type in BCG Shortage, you will get LOTS of recent posts on the subject

Sara Anne

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

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3 years 9 months ago #48411 by sara.anne
Yes, BCG has been in short supply for over a year now. There has been a LOT of discussion of this on the Forum....Look over the posts in "Non-Invasive." Apparently our search function is not working today (some web site maintenance is underway) but by just scanning down the posts you should find lots of posts.
However, none have a solution.

BCG is a "live" biological entity and, according to the manufacturer, they have had quality control issues with its production.

As for what causes bladder cancer, we do know that smoking is a true cause. There are also some relatively obscure chemical exposures that have been shown to lead to cases of bladder cancer. However, as is true with most cancers, no one really knows. For a disease of "smoking men," there are sure a lot of women with it! There have been a lot of epidemiological studies, done by medical professionals and scientists, but no one can say for sure what causes it.

You mention that you have not seen an oncologist. That is true for most patients with non-invasive bladder cancer. Traditional chemotherapy, the preserve of oncologists, is not effective at this stage. Therefore, our treatments, usually BCG and/or watch-and-wait, are supervised by our urologists.

Sara Anne

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

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3 years 9 months ago #48410 by lindaofsb
Greetings. I had bladder cancer diagnosis March 2014 and apologize for not giving correct details - i will do that for next post. Generally it sounded scary - invasive but nothing in the muscle layer. Two types of cells, and nothing past stage 1 which was surprise. In July had good biopsy result. In September was supposed to have 3 BCG treatments but because of shortage only had 1 with 2 mitocyicin (sp?) treatments instead. I have continued to have minor discomfort when urinating (4 months later) but no complaints. Today was scheduled for second of 3 BCG treatments and cancelled again because of shortage. I read online last month that some places were rationing the BCG (not giving as much to some people as they would before). I asked my urologist about the shortage last month and he didn't seem to be aware that it was much of a problem.

I see you have a thread about BCG but nothing since 2006 or did I miss it? The other thread I would be interested in is a national (international even better) survey of bladder cancer patients. I am a woman who never smoked so I would love to know whether I did something that could be avoided. It would not be that hard for the medical professionals to distribute such a survey as people get diagnosed so I don't understand why that is not happening.

In my community there is a cancer center with all kinds of resources and support groups. I have never seen an oncologist and feel like I am outside of any loop that might get me answers to the above questions.

Thanks to everyone who started this site and continues to spend hours maintaining it.

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