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6 months 3 weeks ago #57464 by sara.anne
Yes, the use of BCG in type 1 diabetes is in the "looks good but needs more research" phase. Mass General Hospital is one place conducting phase 2 studies of this. Perhaps the possibility of a large market will stimulate other companies to get into the business of producing BCG!!

Sara Anne

Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
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6 months 3 weeks ago #57463 by salliemae
Yeah. this recent shortage is a big PITB!
Nothing like having your mind all set and being ready, only to find out Merck is having to dole it out "Merck will be proportionally allocating the medicine across countries, including the United States." From article below.

Jan. 10 2019 Article: ADDRESSING THE LIMITED SUPPLY OF BCG IN 2019
https://www.bcan.org/bladder-cancer-bcg-shortage/

My Primary just told me that BCG is also being considered for treatment of Diabetes now. Guess Merck had better get a move on and kick the production line into high gear.

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6 months 3 weeks ago #57462 by RJake1
Thanks! I'm eager to start the medication but Dr doesn't have any. Very frustrating and concerning.

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6 months 3 weeks ago #57446 by Finalman2
I'm 3 weeks out from starting my 7th BCG treatment.

Although the effects feel like they get worse each week, I can say that it was no where near as bad as I had made it out in my head.

HG is definitely beatable, go at it strong and I look forward to hearing your good news.

28/10/18 - Blood???
24/12/18 - Dx TaG2
15/01/19 - Start BCG
06/04/19 - Cysto + Biopsies - CANCER CLEAR
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7 months 2 days ago #57356 by sara.anne
I will just copy Alan here....I am also almost 11 years out and no sign of cancer. BCG has its ups and downs but is SO much easier than something like chemotherapy. Eleven years from now you will be advising others!!

Sara Anne

Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
Forum Moderator
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7 months 2 days ago #57353 by salliemae
I was diagnosed low grade non-invasive in 2014. I've had 8 TURBTs, and even more removals of small tumors in office during cystos. Two runs of BCG-6 weeks or instillations each time. I'm due for a maintenance run of 3 in three months if it is available.
Finally, last visit two months ago there were no more live cancers. He did a biopsy of a suspicious looking whatever, but it came back benign.
Everyone reacts differently to the BCG instillations. I'm sure more people will chime in and help with info on what they experienced. Worst part for me was having to hold it. I countered this by doing my urine sample at home in the early AM and refrigerating it until time to go to the office. Also put off taking my diuretic meds until after I could void post instillation. Once I could void again I pushed fluids, especially water.
There was some pain, some mild bladder spasms, a bit of bleeding but it usually only lasted the first day post treatment for me.
But. Everyone is different. I hope others will share their experiences and coping strategies with you. Your doctor should have some info on what to expect and strategies for dealing with post treatment effects.
I was nervous the first time I had BCG, but the most important thing is the BCG instillations are doable and they work.
Spend the 2 weeks doing fun things, things you enjoy and watching comedies or whatever makes you laugh.
Hang in there, you CAN do this.
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