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BCG shortage

5 months 1 week ago #56780 by Dantegirl
Please keep us posted George! I’m worried about this too!

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5 months 2 weeks ago - 5 months 2 weeks ago #56704 by Jack R
Sheisdor7

The American Cancer Society has a statement about bladder cancer and the occurrence in families taken as a group, on their website. cancer.org, linked below. The statement does not rule out a familial association.

"Some people inherit gene changes from their parents that increase their risk of bladder cancer. But bladder cancer does not often run in families, and inherited gene mutations are not thought to be a major cause of this disease."

Perhaps such a statement, along with a similar one made by the NIH, gives rise to a cautious approach by your doctor. No one here will try to outguess your doctor.

https://www.cancer.org/cancer/bladder-cancer/causes-risks-prevention/what-causes.html

You may want to also review the NIH Bladder Cancer Genetics discussion at:

https://ghr.nlm.nih.gov/condition/bladder-cancer

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 , round 3
Begin year 4 with cis
The following user(s) said Thank You: Sheisdor7

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5 months 2 weeks ago #56703 by Sheisdor7
My urologist is being extremely cautious as my sister also was diagnosed with T4 bladder cancer last April. Maybe he's being too cautious??

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5 months 2 weeks ago - 5 months 2 weeks ago #56700 by Jack R
The current (January 2019) BCG shortage leaves two choices for those of us who would be using BCG right now, including me. We can wait for BCG or accept another treatment.

I will be trying (yet another) another option during this shortage. While I agree with Sara Anne's statement, "Mitomycin is not as effective as BCG", Mitomycin (MMC) is an effective treatment, and is one of the treatments of choice for those who fail to benefit from BCG. Some people respond to MMC who did not respond to BCG.

From the long article linked below, "Consensus Document", the following quote regards treatment for those who experience a "BCG failure".

"• After the first BCG failure, patients (who have not progressed) have several treatment options, including repeated BCG (or continued maintenance), BCG plus interferon, single-agent intravesical chemotherapy (for example, mitomycin, gemcitabine, or valrubicin), sequential chemotherapy (for example, gemcitabine–docetaxel) or device-assisted chemotherapy. "[end quote]

BCG, if available, it the first choice because it has been shown to produce the "best" results for the" largest number" of patients, on a statistical basis. UNFORTUNATELY, What will work best for any particular individual is an unknown, and must be found through trial and error.

The choice to wait or use an alternate to BCG is up to each of us with consultation from care team; it is an individual decision, based on the status of our individual situations.

My bottom line is, "Don't automatically reject good options when the (statistically) best option is unavailable". Choosing to use an alternative now does not exclude the possibility of treating with BCG later. Talk to your care teamabout options open to you, in your situation.

See the BCG use and alternatives discussion in:

http://www.nature.com/nrurol/journal/v12/n4/full/nrurol.2015.58.html

Title: "Consensus statement on best practice management regarding the use of intravesical immunotherapy with BCG for bladder cancer"

Best to all
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 , round 3
Begin year 4 with cis

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5 months 2 weeks ago #56696 by sara.anne
My response was to the information posted by Sheisdor7 in his response to you.

Sara Anne

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

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5 months 2 weeks ago #56695 by George9
I have the high grade. Thank you.

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