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Questions and venting

5 years 4 months ago #47897 by sara.anne
Jodie, I will try to answer your questions. There are multiple protocols for giving BCG, but the "usual" one is to have 6 instillations, a week apart, for 6 weeks. Then about three months later you have three more, and this repeats for a total of about 2 years. It has been shown that the maintenance regimen improves the outcome, especially with CIS.

Mitomycin is often given in the rare cases where a patient cannot tolerate BCG. Now, with BCG in short supply, it is being used instead of BCG. It is not as effective as BCG, but is a good substitute.

The side effects of BCG tend to increase over time as the treatments continue. You are trying to stimulate the immune system in the bladder and the side effects indicate that this is happening. The first that you generally notice is fatigue a day or so after the treatments. Burning when you urinate blood in the urine, and "having to go" are the most common. If the side effects become too severe, the dose can be drastically lowered. By the time I finished I was on 1/3 the original dose and even 1/10th has been shown to be effective.

Dr. Donald Lamm is one of the pioneers of BCG and his web page gives a lot of information. His schedule of treatments is not quite the same as the one most of us have had. But it is interesting to read.

My checkups have been cystoscopy every three months for two years, then every 6 months until the five year mark, and NOW once a year. Every five years my uro wants to do a CT urogram. Of course, if a "bad" spot appears, a biopsy is indicated.

As for diet, as in all things, moderation is the key. Whenever I hear of someone going on a special regimen (juices, paleo, gluten-free) I fondly remember the number of times my father sat down at the dinner table and said "what are we not supposed to eat today?"

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: JodieG

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5 years 4 months ago #47887 by fighterm
Hi Jodie, I am not a med. doc, but I know a bit about cancer as I am a biochemist and it's easier for me to read scientific papers about cancer. Cancer is caused by mutatations in our cell DNA. Normally people acquire random mutations that can accumulate over life time. Carcinogens increase risks of mutations. Some mutations cause automatic cell death and the body can get rid of them, but others can cause cancers. The BCG treatment is putting our immune system (CD4 and CD8 T cells) to fight bladder cancer. For now it's the most effective treatment. Vitamins and supplements are not recommended during cancer treatments as they can help cancer cells to survive. Just eat normal diet.
I am fighting two cancers. Just finished my last non Hodgkin's lymphoma treatments and hope to have my first turbt in January. Good luck to you. Just listen to you doc or get a second opinion from a major cancer center, if you have any problems.

66yo female, 1992-Non-Hodg. lymphoma(NHL) high grade, chemo, rads, 2007 NHL, low grade, rads, 2013 NHL low grade, stage 4, chemo till Jan 2015; 2014 TCC, first Turb 01/29/2015.

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5 years 4 months ago #47886 by JodieG
Hi, cgbowness. Well, my doctor doesn't have the BCG but the cancer center he is referring me to for the BCG installations does. I really wanted to go to another place but they didn't have it, so there you go. Yes, I had 2 negative cytology reports but positive biopsies. Question - have you noticed the difference between the BCG and the Mitomycin? Did you have some side effects with BCG and different ones with Mitomycin, and if so, what were they? Anything else you would like to tell me about your experience?
Thank you so much for your reply, and I wish you all the best! -Jodie

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5 years 4 months ago #47885 by JodieG
Sara Anne,
Wow - thank you SO much for your reply. Your words are comforting and soothing to me, so thank you so much for the time you took to write them! I'm looking forward to reading the Articles of Interest. It just really baffles me how I contracted this because I don't have any of the normal risk factors (except I do color my hair but I've used an expensive organic hair color for years). I want so much to DO something to help me not get this again, and yet the rigorous diet I followed at times felt like not living because it was so time consuming to juice raw vegetables and prepare them. I'm vacillating between eating whatever I want and trying to not consume anything that is 'cancer promoting' like even fruit sugar so that I almost feel paralyzed. I didn't eat much the week after my doctor told me I still have cancer and so I dropped 5 pounds, and I'm already considered thin, so I know that's not good.

Anyway, I'm so happy to hear that you are so many years of being cancer-free! It is definitely encouraging to hear that! I've clarified some questions and since you said to feel free to ask questions, here they are:
1. Can you explain what your BCG maintenance was?
2. How do they do checkups on you now? (I'm afraid of having to do multiple bladder biopsies).
3. Did you have any side effects from the BCG and if so, what were they?

Thank you again for your time and your care!

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5 years 4 months ago #47883 by cgbowness
Hi Jodi, I was diagnosed last April and have completed my 6 BCG treatments and 3 maintenance BCG (1/3 of the dose ) in Sept . I'm wondering if your doctor actually has the BCG because there is a major national shortage for it. My doctor doesn't even use it anymore and is back to Mitomycin which is a chemo drug. I get my 3rd Mitomycin dose on Friday.
I get your worries though, the reoccurrence rate is way too high and I feel like it's just a matter of time before it comes back. Did you say the cysto was ok but then the biopsy showed up positive? I always wonder if the cysto is a safe way check for cancer cells.

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5 years 4 months ago #47881 by sara.anne
Oh Jodie, I am so sorry that you are facing this. First a little background....I really do not understand those statistics either. I was diagnosed with CIS over six years ago, did the BCG and the BCG maintenance, and have been cancer-free ever since. I am now on one year checkups. Yes, it does have a reputation for coming back, but from my years of experience on this Forum it does not appear to be anywhere near the rate you quoted, and that I have read also.

Second, I applaud you for trying to live a more healthy way. However, it is important to remember that a. other than smoking and a very few other things we do not know what causes bladder cancer; b. something has gone awry with the immune system in the bladder lining and whatever it was most likely began YEARS that a sudden change in diet cannot change what has already occurred. It is possible that there is a genetic issue? That a "stray cosmic ray" passed through the bladder (I am teasing, here)? There are some interesting scientific discoveries about the types of cells that lead to bladder cancer ...several of which are reported here in the Forum under "Articles of Interest"....but none of them lead us directly to cause/effect/cure.

One of the GOOD things about a lot of bladder cancer, especially CIS, is that there is a treatment that is effective in many cases...BCG. It is very do-able. There is some discomfort (I would rather do BCG than go to the dentist) BUT it is no where near what the systemic chemotherapy that many cancers require. It DOES stir up the immune system in the bladder lining and enables it to fight off the cancer cells.

You have nothing to lose and everything to gain. I am so glad to hear that you are having BCG. I am sure that you will have many questions about it, and there is a lot of information in this Forum about others' experiences with it. Remember...we are all different. Please feel free to ask as many questions as you wish.

Good Luck

Sara Anne

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

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