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5 years 1 month ago #46433 by carol58
Sara.Anne,

Thank you for your words of wisdom. They are greatly appreciated. I have been reading quite a bit on this website and trying to get a feel for how the bcg will go for me. The mytomicin after the original Turbt in my opinion was aweful with the burning and pain I had for days plus a catheter. I then picked up an infection a few days after and I was sick in bed for about 8 days. I just felt so ill. This last turb was better except the catheter part. So I think that might be where my anxiety with bcg is stemming from. I have complete faith in my doctor since he actually made the phone call to me after hours the other night.
My next appointment is on the 24th for the bcg sessions.

I hope you don't mind me bending your ear from time to time. I'm so happy to hear you are cancer free.

Carol58
T-1 gr 3 bc
2 turbs
Getting ready for Bcg

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5 years 1 month ago #46431 by sara.anne
Carol, BCG is very do-able. You will find LOADS of information on this web site.

Remember that BCG is NOT chemo, such as many cancer patients suffer through. It is an "immunotherapy" where the BCG (an attenuated tuberculosis bacteria) is used to stir up your immune system, especially in the bladder lining. Then your now-pepped up immune system will fight the cancer cells.

Most patients do very well with BCG. The most common side effects, which tend to increase as your body becomes sensitised to the treatment, are fatigue for a day or so after, cramping and blood in the urine for a few hours to a day or so after, burning with urination. If the side effects become too uncomfortable as you progress, your urologist can reduce the dose...I was on 1/3 by the end of the maintenance treatments...and doses as low as 1/10th the original dose have been shown to be effective.

IF you have NO side effects, I would wonder if the BCG is "working." The fact that your body reacts, shows that it IS working!

A good summary of a lot about BCG can be found on Dr. Donald Lamm's website...
he is one of the experts in this treatment.
http://www.bcgoncology.com/treatment/bcgInst.html
Several things to remember as you read this....all POSSIBLE side effects are listed (you have seen all the drug ads on TV) and the odds are that you will NOT have any severe reaction. Second, the protocol that your urologist follows may be a bit different, but still a good one.

In my opinion (not a doctor, remember :) ) is that it is well worth it to go through the maintenance regimine after you finish the initial 6 weeks. It has been shown to increase the effectiveness of the BCG significantly.

Please feel free to ask any other questions you may have. There are a LOT of us who have been through this. In my case, I am now 6 years cancer-free!

Sara Anne

Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
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5 years 1 month ago #46430 by carol58
Great News! My doctor called last evening with my biopsy report. My tumor was sucessfully removed and did not reach the bladder wall. However, there is some dysplasia and will be starting BCG in a few weeks for 6 treatments. I am a nervous about that part of this now because i know nothing about it. However, I am feeling very blessed today!

Thanks for listening!

Carol58
Stage 1 grade 3 bc

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5 years 1 month ago #46426 by carol58
Thank you for the nice welcome and responding so quickly. I will probably be asking many questions and learning as I go. I just want to say thank you in advance.

Carol58
Stage 1 grade 3 bc

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5 years 1 month ago #46424 by Alan
As many will say sorry you joined our club but, welcome and use us! Sounds like your URO is on top of things as a second TURB is almost standard protocol. There is a lot of hope and survivors here. The pain and urgency are "normal" however, I would certainly let the doc know as sometimes medication will help plus by now that should have passed. Keep posting, someone should be around to answer questions.

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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5 years 1 month ago #46423 by motomike
Hi Carol
Yes waiting on results can seem like a forever thing. I'm certain that your pain will be less by now and I hope that your Drs review will be encouraging.

I'm 70, retired heat/air contractor. After 4 months of keymo ileal conduit (IC) surgery removed bladder & prostate May 2010
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