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New to the site, going through treatment

9 years 1 week ago #38675 by mmc

Here is a link to Dr. Lamm's website. Start here and then search around for other info he has on BCG and why the maintenance doses are so important.


Summer did show up for you. I've been coming to Seattle (well Bellevue) Monday through Thursday or Friday for the past 4 weeks and have two more weeks to go. You had summer two weeks ago for about 4 days. I think Sara Anne is right. Somebody may have stolen it. However, I think I like they 65-70 degree weather better anyway.


Age 54
10/31/06 dx CIS (TisG3) non-invasive (at 47)
9/19/08 TURB/TUIP dx Invasive T2G3
10/8/08 RC neobladder(at 49)
2/15/13 T4G3N3M1 distant metastases(at 53)
9/2013 finished chemo -cancer free again
1/2014 ct scan results....distant mets
2/2014 ct result...spread to liver, kidneys, and lymph...

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9 years 1 week ago #38674 by pietrzyk
Stolen??? :)

It never showed up! :(

Thanks, and I still need to follow up on the dosage and dilusion amount. The other benefit I have is that the wonderful woman in my life now, her step-mother is an ER doctor out of Portland. So she helps us to ask all the right questions. Like going in and storing some swimmers for a later date. :)

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9 years 1 week ago #38673 by sara.anne
Jason, in my opinion, you definitely want to do the maintenance BCG treatments and I am glad that your uro is recommending them. There are all sorts of statistics that show much better outcomes with the maintenance regimen. You are going through the "agony" now, make the most of the effectiveness!!

That being said, it is no secret that the more BCG you get, the more side effects you will have. As your body gets sensitized to the BCG, it reacts more strongly (and after all, we are taking the BCG to stir up the immune system in the bladder to fight off any more cancer.) If you read the material available on BCG, especially Dr. Lamm's work, you will find that, if side effects become too uncomfortable, the dose of BCG can be reduced significantly and still be effective. By the time I finished my treatments, I was down to 1/3 dose. Some people even go to 1/10 the original dose.

My uro told me that the only reason for the choice of the initial dose is that, when it was first being used, this is the dose that the manufacturer packaged it in! Very scientific!!

You are fortunate to be in Seattle...there are some awesome cancer treatment choices there!..BTW, I am in Portland. Who has stolen our summer?

Sara Anne

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

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9 years 1 week ago #38672 by pietrzyk
Thank you all so far. :) Much appreciated!

Wish I joined before starting treatment, but it seems I now know what to expect. At least for me, the side effects are, fatigue, body aches, headaches, little lightheaded, and of course, bladder discomfort.

Some added info from my post yesterday, I had one urologist do the first diagnosis (ct-scan and cystoscopy) and surgery and a second specialist, a urology oncologist, do the second TURB and second diagnosis. The second doctor is part of the Seattle Cancer Care Alliance, and he is working out of the University of Washington Medical Center (UWMC). So I think I am in good hands with the specialists as well as the people around me including you all. :)

The one interesting fact is that the specialist is recommending the traditional 6 week treatment and then a follow up 3 week treatment every 3 months for the next 3 years. Has anyone else gone through the additional treatments?

The last bit of info... 38 year old male, no history of cancer in the family, and a non-smoker. So lucky me!!! The 1% of the 1%. The benefit I have is my youth, and the fact that in the 8 months prior to my diagnosis I had lost about 40 lbs and that I eat very healthy. So I think I coincidentatlly started out in the right direction. :)

Well, thank you again, and I will keep you all up to date on the progress. :)


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9 years 1 week ago #38670 by Joey
Hi Jason, if you need any information on the BCG treatments and side effects, just let us know. Many of us here have much exeperience.


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9 years 1 week ago #38667 by CatherineH
Hello Jason... Welcome to the site. You will find a very eclectic, interesting, funny, informed, and supportive bunch of folks here. You've had a couple of very scary months for sure.

Glad your treatment is going well.

Best wishes... Catherine
Forum Moderator Team

TURBT 1/21/10 at age 55
Dx: T2aN0M0 Primary Bladder Adenocarcinoma
Partial Cystectomy 2/25/10
Vanderbilt Medical Center
Nashville, TN

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