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Still No BCG!

6 months 1 week ago #57699 by Jack R
Alanta51

I found intravesical Gemcitabine to far more user friendly that BCG. No pain, burning or urgency beyond a couple of hours. There was some one day fatigue. We each react somewhat differently.

See Dr Kamat's thoughts about BCG substitutes at:

https://www.bcan.org/wp-content/uploads/2019/05/BCG-Shortage-Dr-Kamat-GU15-Editorial.pdf

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# 3
Begin year 4 with cis
2/19 Chemo #4
9/19 NED again :)
Until next scope :) :)
The following user(s) said Thank You: Atlanta51

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6 months 1 week ago #57698 by Atlanta51
Appears my urologist’s office is also impacted by the BCG shortage. Is anyone fluent with the side effects of Gemcitabine?

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6 months 2 weeks ago #57684 by Regor
Here is my providers approach that is being taken in regards to the BCG shortage (via my Cystoscopy appointment last week).

I will forego Maintenance for the moment, while Kaiser Permanente comes up with a bigger plan to treat while the world continues to experience the BCG Shortage.

The treatment that is probably 2-3 months away from reality is: Gemcitabine Chemo Therapy, injected just like BCG, directly into the Bladder. Oh, and the Maintenance treatment using Gemcitabine would be once a month, not 3 treatments 3 weeks in a row every 3 months.

TURBT Jan 2019; Diag: CIS
Induction BCG (Mar 19) /Maint BCG (Aug 19)
TURBT Nov 2019; Diag: CIS
Repeat Induction BCG starts Dec 2019

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6 months 2 weeks ago - 6 months 2 weeks ago #57683 by Jack R
RJake

The American Urological Association has made the following recommendations (Feb 2019) it describes the track I am currently on. Link below.

https://www.auanet.org/about-us/bcg-shortage-info

Talk with your doctor(s) about the options. Not all urologists and offer all alternatives; in some case an oncologist must provide the treatment. Insurance and network problems arose for me in selecting an alternative treatment, but were overcome after dealing with my health insurer.

Also see thought from the 2015 shortage at:

https://www.bcan.org/wp-content/uploads/2019/05/BCG-Shortage-Dr-Kamat-GU15-Editorial.pdf

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# 3
Begin year 4 with cis
2/19 Chemo #4
9/19 NED again :)
Until next scope :) :)

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6 months 2 weeks ago #57680 by sara.anne
This is a question for your doctor. He should be able to give you some idea of when he expects BCG and how long he feels you can wait for it as well as any other options he can offer 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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6 months 2 weeks ago #57678 by RJake1
Been waiting over one month to start BCG treatments, but none to be had. Any suggestions on how long I should wait before embarking on some other treatment (Mitomycin-C)? HG non-invasive.

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