Lowered dose BCG - so far so good

13 years 11 months ago #31854 by Nix
Replied by Nix on topic Lowered dose BCG - so far so good
Alan, I had also read this on Uro Today. It brings hope that at least there is something else in the works. The fact it works with your DNA and immune system sounds so promising.

Nancy

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

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13 years 11 months ago #31852 by Alan
Replied by Alan on topic Lowered dose BCG - so far so good
Don't know of any updates on the micobacterial clinical test but, there someday appears to be an alternative to BCG. www.urotoday.com/index.php?option=com_content&task=view_ua&id=2221109

Perhaps someone else has an update.

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 11 months ago #31849 by vgau
Replied by vgau on topic Lowered dose BCG - so far so good
Ann,
It's great that you are sharing you journey with this. I am finding more and more that there is no standard treatment, but rather adjustments made case by case.
Knowing that information will make a difference for someone who thinks they just must fail rather than reduce the dose.

Once again, your advice will help many.

Vi

Dx 10/5 Non Invasive Papillary

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13 years 11 months ago #31839 by Rockyiss
Replied by Rockyiss on topic Lowered dose BCG - so far so good
Hi Ann, Sorry to hear you are reacting like you have to bcg. What a drag. I hope you start to feel better soon especially with your back. My back is Is messed up and when it I can't keep going to stay in shape it seems it just gets worse.
Hope you feel better soon. Rocky

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13 years 11 months ago #31836 by blb
Replied by blb on topic Lowered dose BCG - so far so good
Hi Anne,
I read your post and was very interested. I had 4 treatments of BCG and then I had the onset of Rheumoid Arthritis in several joints and eyes. After getting shots from the rheumatologist and several weeks of pain - It has gone away except for when the weather changes. Since that time I have had clear scopes and have not had maintenance treatments. My Uro and Primary doctor decided that if the cancer came back we would have to decide at that time what course of action to take. Thankfully we have not had to make that decision. Thanks for writing in - good luck, hope to keep hearing the good news. Bobbi

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13 years 11 months ago #31835 by sara.anne
Replied by sara.anne on topic Lowered dose BCG - so far so good
Ann, I am supposed to follow you on Tuesday, but my back is KILLING me. Have no idea what may have caused this....do you suppose it was trying to put together the Sauder desk-in-a-box? But I worked on it Sunday/Monday/Tuesday and my back started hurting on Thursday. So bad that today I relented and am taking Vicodin. No way I am going to do BCG on Tuesday if it is still like this....I can hardly squat to sit down "you know where." I keep telling myself that I hurt my back...this is NOT caused by kidney/bladder or whatever else my imagination cooks up. YES, I DEFINITELY HURT MY BACK.

Re: the dose/scheduling of BCG. As my uro loves to point out, there is no real "science" behind any of this. Really, only Dr. Lamm has really looked into it. The reason for the 1/3 as the next lower dose? The stuff comes in a vial that is easier to break down into thirds than halves! The reason for the initial dose? That is how the original company packaged it. The reason for the length of time? It seems to work!!! Ah to be at the forefront of science!!!

Sara Anne

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