I did it again...and survived!

13 years 10 months ago #32343 by Nix
Replied by Nix on topic I did it again...and survived!
Good for you Sara Anne :laugh:
Just remember you can go lower than 1/3 dose. In response to my email Dr Lamm said:

We go as low as 1%. You can also reduce retention to 30 minutes or less.
I also sometimes give heat inactivated BCG to those who do not tolerate
live BCG.
Don Lamm, MD
On Sun, 24 May 2009 19:22:39 -0400,


Your Uro can keep going down in strength. Less is better with BCG. The purpose is for a reaction from your bladder, and as long as you are getting a reaction, less is better.

Nancy

Nancy S
Ta CIS
dx Ta 11/06
dx Ta CIS 10/07

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13 years 10 months ago #32335 by pemquid
Replied by pemquid on topic I did it again...and survived!
Great news Sara Anne! I know you were somewhat delayed n getting this round of treatments, and that you were concerned about the potential level of side effects, so this is good news indeed.

I, too, was pleased with the 1/3rd dose of BCG I recently had. I did have persistent (though mild and very bearable) symptoms after the third weekly dose -- some sense of urgency, burning, etc. -- that lasted well over a week. If that's as bad as it gets at the 1/3rd dose, I think I should be able to tolerate the whole series. The nurse doing the treatment told me that they'd changed the protocol from a total of 30 instillations down to 27, so I'll have one more set of 3 this year and two more next year (9 doses), and then I'll be done. the nurse also said that they now had quite a few people on BCG who were down to the 1/3rd dose, and so far they seemed to be doing well in terms of symptoms.

Again, congrats on getting through this round of treatments without too much difficulty.

Ann

Small TA Grade 1, May-06; recur (2 tiny), same, June-08; TURBTs both times. BCG begun July-08, dosage to 1/3rd May-10, completed treatment December-11. All clear since 2008.

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13 years 10 months ago #32334 by Alan
Replied by Alan on topic I did it again...and survived!
Sounds like a good report! You have and will beat this!

Alan

DX 5/6/2008 TAG3 papillary tumor .5 CM in size. 2 TURBS followed by 6 instillations of BCG weekly with a second round of 6 after a 6 week wait.

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13 years 10 months ago #32330 by Cynthia
Replied by Cynthia on topic I did it again...and survived!
:P :laugh: :cheer: :silly: :cheer:

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 10 months ago #32325 by sara.anne
I did it again...and survived! was created by sara.anne
Yesterday I had my third of three BCG instillations, once again at 1/3 dose. This seems to be working well. While the afternoon after the procedure was no fun, it was not nearly as bad as previous episodes. Some bleeding, REAL discomfort, but survivable. The only real side effect has been/is overwhelming fatigue.

My uro offered to postpone the treatment yesterday due to the fatigue. He has had some very unpleasant episodes when he convinced someone to continue with treatments when they didn't want to, so I think he leans over backwards the other way. However, I WANTED IT OVER NOW and since I didn't have any signs of cystitis, I felt safe doing it.

Think I have one more series left to go. Will find out for sure when I have my next cysto in August. Meanwhile, will probably sleep for the next week!

Sara Anne

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