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BCG Treatment

4 years 9 months ago #49066 by sara.anne
As usual, I agree with Alan....BCG is not without its "challenges" but it can save your bladder. And as my uro explained, there is no scientific basis for the dose used; it was just what was available when the studies started, and it worked! If you have unbearable issues, ask to have the dose reduced. It will still be effective.

BCG is usually only prescribed for high grade or recurring low grade bladder cancer.

The regimen described by McLabhran in his post is the standard that has been used effectively for a long time. There are some variations that urologists may use that are slightly different in timing. The important thing is to do the maintentance as well. It has been shown to increase the effectiveness of the treatment significantly.

I also have seen reports (and my uro agrees) that the "rolling around" routine doesn't add anything to the effectiveness....just makes us feel as if we are "DOING SOMETHING GOOD."

Sara Anne

Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
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4 years 9 months ago #49065 by Alan
1/2, 1/3 even as much as 1/10 strength applications have often been recommended when side effects are too much. Many on this forum have done that and had success. Just a thought. There is simply a lot about BCG that is unknown.

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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4 years 9 months ago #49064 by ustabee
Thanks for sharing Alan, your experience made me feel better about my chances of using the BCG treatment. After the failure of the first treatment I went to an Oncologist
who strongly recommended a second resection because my cancer was aggressive. Next week I am ready to try the BCG again. Here's hoping.
Ustabee

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4 years 9 months ago #49063 by ustabee
Thanks for sharing McLabrahan, particularly about the treatment center. I am scheduled to resume taking the BCG in a couple of days after a hiatus for some additional healing, so if I have a problem at least I know of a good alternative.
Good luck to you,
Ustabee

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4 years 9 months ago #49060 by Alan
Ustabee, none of the treatment is fun but, doable and certainly better than Chemo. The goal is to hold 2 hours but almost none of us make that after several installations. My second round of 6 I couldn't hold but 75 minutes to the last maybe 50. Just a goal. As far rolling around. My URO laughed when I mentioned it! He said the bladder is actually a small muscle and when empty the solution will bathe it all. I still rolled around side, back, stomach and side every 15 minutes figuring it couldn't hurt The worst part for me was for a few days I had to know where a restroom was in 30-60 seconds because I was going to pee whether I wanted to our not. I am 7+ years out so let's hope for the best outcome!

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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4 years 9 months ago - 4 years 9 months ago #49047 by mclabhran
I just wanted to share my experience with you. I was diagnosed with bladder cancer June 2014. The doctor I saw in Tarzana, California removed the tumor and wanted to give me 10 weeks of chemo (Mitomycin) injected into the bladder. Any question I had the doctor would merely shrug his shoulders and gave a very evasive response. My gut feeling told me this was not the way to go and I could feel such a deep resistance in my gut that was saying...No.No No No No. At that point, I decided to do some research and get another opinion. I ended up talking to a counselor, a doctor and two past bladder patients from the Cancer Treatment Center of America. I spent a week of evaluation (over all health), had various tests done including genetic testing. I am glad that I made the decision to have CTCA treat me. They simply DO NOT insert the BCG and send you home shortly afterwards.

The BCG treatment is not the most pleasant thing to go through, but it is much better than chemo! I was treated and still going for maintenance at the CTCA center. The first year is aggressive treatment since I am told it is a high grade type of cancer. First 6 weeks and then every 3 months there is 3 weeks of treatment, then a biposy and the process is repeated for a year or longer as appropriate. The doctor will decide when I should go every 6 months and thereafter once a year. While at the Center, I am in a room all hooked up to a catheter and have to rotate (like a chicken on a rotisserie) every 15 minutes so that the BCG washes all sides of the bladder. There is a nurse who comes in every 15 minutes to check on me and provide whatever care is required. It is a few hours after the treatment that it burns like salt in an open would and the medication that is given to me to soothe the burning sensation does not work for me. I end up taking some pain killers for a few hours and drinking only room temperature alkaline water for the next few days. No tea, no coffee, no juice of any kind. Just plain alkaline water.

I refuse to let this "thing" that I cannot see with my own eyes just take me down! It might do at some point, but not necessarily and certainly is not going to happen today! At the back-end of being treated with BCG, I have changed my eating habits (not that I ate unhealthy), I drink structured alkaline water, no sugar whatsoever and anything I know that "cancer" likes to feed on is not on board. Cancer likes sugar of every kind, acidic foods, lack of oxygen and when your immune system is off. Diet is extremely important and so is the type of water you drink. You go into the supermarket and walk down the aisle you will find there is hardly any item that does not contain SUGAR! Even dairy products are not all that great for cancer patients.

What we eat, put on our skins, breathe and the like needs great attention and we should not be complacent about all this.

Cancer is also a money making business should one forget.

I hope sharing my experience here with everyone that it will help someone else put their mind at ease to some degree.

Love, light and blessings,
McLabhran
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