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Maintenance BCG begins ... differences

6 years 2 months ago #43095 by mmc
Daystar,

What dose strength is your BCG? Maybe your doc can reduce the dose if it is taking that much out of you.

One dose every month is not the norm. Typically, it is once a week for 6 weeks and then maintenance doses at periodic intervals that begin at three months and then stretch out to every other year of a dose a week for a three week period.

If I were you, I would send a note to Dr. Lamm. Go to this page: http://www.bcgoncology.com/treatment/bcgInst.html

Read the whole page and then click the Ask Dr. Lamm link to ask the question. Use the one that says you have a "New" question.

What your doctor is doing seems to make sense from a logical point of view since it seems to be hitting you so hard. It "MAY" mean (but I don't know this) that the BCG is actually triggering a longer immuno-response in your case which would be a good thing. However, it could be a million things, so following up with your urologist was and is absolutely the right thing to do as is asking Dr. Lamm because (in my humble opinion) he is the top expert in the world on BCG and has done and is doing the most research.

Hope that help!
Mike

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...
The following user(s) said Thank You: Natashab5

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6 years 2 months ago #43091 by daystar
I Am about to start maintanace next week, but i am still so tierd and dont have any energy they did blood work and all that is fine, i have had two rounds of bcg 6 weeks each timee last one was 3 months ago, so i had my check up doc said all looked much better so he put me on 1 bcg a month for 6 months is this right and is it normal to be so slow at getting energy back, i am 68 yrs old and I have lost strength in my whole body

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7 years 8 months ago #37236 by dukel
I didn't have that many rounds of bcg, but had months of chemo for prior cancers. Cynthia, like your "Chin up and straight forward". My "Get tough, be tough, stay tough". And as you say "sights on the goal" It's all a mind set! A way for each of us to find a way to keep pushing forward. Kimberly, it sounds like you have found that mind set too. If you can make the bcg work for you, it will all be worth it. Hang in there.
Duke

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7 years 8 months ago - 7 years 1 month ago #37233 by Alan
Well said Cynthia. When I was taking BCG and as it wore on me all I had to do was think about those with worse problems. I had too many friends taking heavy doses of chemo for other cancers to despair very long about BCG. Not to minimize it's effects!

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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7 years 8 months ago #37229 by Cynthia
Kimberly,

Our jobs as we go through treatment is to be a good team player. We have to know what is normal side effects and what is not. We need to report anything that could be of concern as to limit any damage done to our bladders. We really need to see a lot of research into BCG to clarify the amounts needed and rhythm of treatment. But one of the take aways people get here about doing BCG is should be this. Your odds of winning the battle using BCG are vastly improved by being informed enough to have conversations with your medical team in order to miss the land minds. I have been through both BCG and systemic chemotherapy. BCG wears on your minds with so many facing you and it tends to get worse with progression, and there are worries about the infectious potential and it gives you some days of being tired and for some real fun times camping in the bathroom. In a word I found BCG wore on me after a while. But on the upside the worst part for me was having it to look forward to nothing was ever as bad as my mind made it by the time it was time to go again. Feeling bad for me unless there was a problems only lasted a few days. If someone asked me to give one word to describe BCG it would be tedious........... But like any of the treatments I have had I just set my sights on the goal; beating this thing.

Cynthia Kinsella
T2 g3 CIS 8/04
Clinical Trial
Chemotherapy & Radiation 10/04-12/04
Chemotherapy 3/05-5/05
BCG 9/05-1-06
RC w/umbilical Indiana pouch 5/06
Left Nephrectomy 1/09
President American Bladder Cancer Society

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7 years 8 months ago #37228 by sara.anne
Oh Kimberly, I LOVE it: "My husband pointed out that the "old me" is busy working with the BCG to keep me cancer-free." I wish someone had told me that when I felt so lousy!! We need to remember this quote for the new people coming along.

Sara Anne

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