6 years 10 months ago #46479 by Loucksy
Hi everyone, I just had my second Turb to remove two superficial, non invasive, papillary tumors 3 weeks ago and will be getting BCG treatments starting next week after the pathologists report suggested that there MAY BE higher grade cells present. Once again did not want to hear that but I am all for the BCG Treatments, if for no other reason then to be pro-active in fighting this damn disease! My question is for anyone who has had BCG treatments and what their experiences were. I just really want to be prepared for everything in the possible side effect department! Thanks so much for posting all your experiences on this forum, your support and wisdom is in-valuable!!

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6 years 10 months ago #46480 by sara.anne
Replied by sara.anne on topic BCG TREATMENTS AND SIDE EFFECTS
You have a great attitude and it will help you through this!! I had the complete BCG experience...the 6 week initial series and maintenance for almost two years. Everyone's experience is slightly different, of course, but I found that it was very "do-able." In fact, being Dental-Phobic, I would rather do BCG than go to the dentist!!

For most of us the side effects are not severe, although they do increase as you accumulate more treatments. This is your body reacting to the BCG...which is exactly what you want to happen. If there were NO reactions, that would indicate that your body is not responding.

My side effects, at first, were discomfort and cramping and bleeding during the hours right after the treatments. Stayed sort of close to the bathroom!! And a bit of fatigue the day after/the second day after. As the treatments continued, the fatigue did increase. I also had some bladder irritation and burning (BCG-cystitis) and, on several occasions, we had to postpone the treatments for a week or so so that the irritation could heal. By the time I finished treatment, I was at a reduced dose, which is not uncommon.

You will do just fine. Keep in your mind that this is MUCH easier than chemo which many cancer patients must undergo.

Sara Anne

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

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6 years 10 months ago #46485 by Alan
I have to ditto what Sara Anne says! This is doable. I would describe this as uncomfortable and no fun but, it sure as heck beats chemo. Fatigue, burning, irritation, etc but this too will pass. I am 6 years out and feel very fortunate.

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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6 years 10 months ago #46495 by rbmc
Replied by rbmc on topic BCG TREATMENTS AND SIDE EFFECTS
Agree with the previous comments. I hope you'll find the weekly routine more annoying than "disabling". Day of (includes the disinfecting chore), and day after, being the worst. Nothing you can't deal with in the positive pro-active approach. Of course, report anything extremely abnormal to the doc. A urine test first will check for infections, so you can proceed. An infection would halt the treatment til cleared up. I scheduled mine early AM, then went to work. A break after the 6 weeks to let things settle down, then a scope to go in and see what happened. Good luck on your journey, and come back to keep us informed or ask questions.

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