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BCG Maintenance ?

11 years 4 months ago #27466 by jtroiano
Well, I drank my water and it helps a little. Fever was up to 101.8. It was almost gone in the morning. Felt tons better. Bladder is still sore three days later but getting better every day. Going for check up in september and then another round of BCG in three months. I will defenetly tell the Dr about the temp. It seems to get just a little higher every time.

Thanks for listening.


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11 years 5 months ago #27398 by jtroiano
I don't mean anything bad, just hate to see people in pain. I do come to this site because it helps, you all help. Its the best place I've found. I will get through it. Just get bumbed sometimes. I always say it could be a lot worse.

Thanks for the support.

I'll let you all know how my treatment goes next week. Probably start drinking my gallon of water 1/2 before it ends.

Jon T

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11 years 5 months ago #27397 by Moonerj
Hi Jon

I have completed my BCG maintenance treatments and have been cancer free for 20 months. Having had bladder cancer sucks, and so do the BCG treatments.
I have learned to live with this health issue, because of this site and another I frequent. These people turned me around mentally 180 degrees.
I found people with something in common, who shared their experiences, did research for me, taught me to live with blc. I now have many friends throughout the world who share in this disease with me.
I am just so grateful my disease was caught early and BCG seems to have kept the tumors away. Is their a quick fix for bladder cancer, darn I wish there was. But someday there will be. Since my attitude has changed concerning blc,I now wish to give back to people what was given to me by fellow warriors. If I can assist someone by sharing my bladder cancer journey, I feel I am doing for them what has been done for me. I can't change that I was dx with bladder cancer. But I can change my outlook and feel lucky that sites like ABLCS exist.
I wish you all the best, and hope that you can make peace with this disease.

TA Grade 1
3 Turbts
30 BCG Treatments
Cancer Free since Nov 2007

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11 years 5 months ago #27396 by Patricia
I'm so sorry you get depressed reading on this site but you have to remember most of the people here are in some stage of treatment or have just been recently diagnosed and are seeking kindred souls with similar experiences and hopefully good knowledge. Its a good place to start. I remember at my first diagnosis and wandering around the internet and reading stats and i was terrified and had not yet realized that stats do not always take into account the skill of the surgeon, the hospital..etc. I was so glad to have found the predessor to ABLCS at web/cafe.
Just keep in mind that there are about 500,000 of us who are survivors walking around.
Take what you can use and pitch the rest.

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11 years 5 months ago #27395 by Nix
I have written to Dr. Lamm several times, in the past, with different concerns, and as always, he has given me guidance with BCG Treatments. Hopefully, this information will be helpful you.
Below are a few excerpts from some of the past emails.

It is important to avoid any carcinogen exposure. While epidemiologic
studies have not confirmed the carcinogenicity of artificial sweeteners, I
would recommend avoiding excess use. Anecdotally, some patients with a
history intractable tumor recurrence report remaining tumor free after
discontinuing soft drinks. Second hand smoke, pesticides, diesel fuel and
organic chemical exposure, as well as excessive exposure to dyes should
also be avoided.
Don Lamm, MD
Reducing BCG does not generally reduce efficacy, in fact there is evidence
it can increase it. I would reduce your dose to less than 1/3 or so.
You can hold it for a short time as well to reduce side effects.
Don Lamm, MD
We go as low as 1%. You can also reduce retention to 30 minutes or less.
I also sometimes give heat inactivated BCG to those who do not tolerate
live BCG.
Don Lamm, MD


Nancy S
dx Ta 11/06
dx Ta CIS 10/07

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11 years 5 months ago #27393 by jtroiano
THank you Patricia for the info. The worst is over in about 18 hours. If I can keep the reaction about the same I can deal with it. The water really helped..

I have one more week and then I'm off for 6 months. I usually go into denial and not think about it. I just want to be healthy. I have had a few close friends with cancer and even one friend that lost her 6 year old daughter to it. I went to the funeral. I'm a car mechanic and I love to fix things. So when I can fix this it bothers me even more. My best friend even had it. No colon anymore, or very little. Just frustrated. I read on here and get depressed, so I'm don't read to much.

Thanks again for listening.

Oh ya and my wife started smoking a year ago.

Jon T

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