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1 year 5 months ago #57255 by ella2004
thank you !!!!! appreciate your help and insight

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1 year 5 months ago #57254 by sara.anne
I moved your post here to "non-invasive" bladder cancer from "Chit-Chat" which is for non-bladder cancer related posts, More people will see, and be able to respond, to your post here.

I responded to the first part of your question about a month ago.....maybe you didn't see it? Here is what I said about the possible BCG shortage and its effect on your treatment:

"First of all, BCG is obtained by the doctor's office, and not via Express Scripts or any outside pharmacy. There are other BCG preparations for other uses which is probably what Express Scripts listed. For bladder cancer it is administered via a very small catheter, much much smaller than any that is used for cystoscopy, for instance. It takes just a few minutes. You go in, they provide the BCG. It doesn't come from somewhere else with your name on it.

There is currently a shortage of BCG and this has been a recurring problem. There is only one supplier (a subsidiary of Merck) and since BCG is a "biological" preparation, made from bacteria, sometimes the bacteria do not cooperate and they need to start all over. This is similar to problems that are seen with vaccines....for example, currently vaccine production cannot keep up with the demand for the new shingles vaccine."

It appears that the shortage is not as bad as predicted, and your doctor has been able to obtain it.

You are receiving BCG because CIS (carcinoma in situ) is high grade and needs immediate attention. There is a lot on BCG on this Forum....just go to the "Search" button at the top right of this page and search for it. The most common side effect is fatigue, with urgency and burning when urinating also common. These side effects do indicate that the BCG is affecting your immune system, which is what you want to happen.

You are doing just fine

Sara Anne

Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
Forum Moderator
The following user(s) said Thank You: ella2004

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1 year 5 months ago #57252 by ella2004
so I have another question , why did my dr mention sometimes its hard to get the BCG ? , I have read that elsewhere also , my husband looked it up and express scripts showed they cover it , now what im a little uncertain of is how its ordered and well I may sound a little paranoid but how do I know they are using my bcg and not someone elses prescription , and that im not receiving an old prescription when its administered , im sorry but im a little weary , also do they administer something to numb the area before putting catheter in

So , my first tumor was removed last may , very small , 1 cm , high grade however , my second cystoscopy after removal was February so in Feb I had what was called red irritations , they were biopsied and came back partially denuded urothelial mucosa with urothelial carcinoma in situ high grade so now my first bcg was this wed 2 days ago , I feel good a little tired maybe had low fever for a short time last eve and wed evening ,,, seriously low !

Sorry to have to ask people this but what can I expect as far as getting sick ? Do most people get sick and when ? Also how do I know its even working ? I'm just curious as to what to expect now .

I Thank anyone who takes the time to give me some insight on what they experienced with BCG even if it's negative

all the best , mary

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