maintenance and/ or tirals

13 years 9 months ago #32631 by sara.anne
Replied by sara.anne on topic maintenance and/ or tirals
I will strongly second Pat's suggestion that you get yourself a second opinion asap. What was your reacton to BCG? Do I understand that they did discover evidence of CIS?

I am not aware of any clinical trials available with bladder cancer right now. This is my PERSONAL opinion, having had professional experience with clinical trials....it would only be a very special clinical trial that I would agree to participate in. This opinion comes from general experience, and not to trials regarding bladder cancer. MANY of them are just testing "new" or slightly different treatments, similar to those already in use, for economic benefits to the developers, not because these drugs/treatments will be making major progress in the treatment of the disease under study. IF I were suffering from a terminal diagnosis, I would probably be actively seeking clinical trials of RADICALLY NEW TREATMENTS, however.

Sara Anne

Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
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13 years 9 months ago #32626 by Patricia
Replied by Patricia on topic maintenance and/ or tirals
You're at UC/Davis and the uro perforated your bladder? WEll thank the lord you didn't have any more BCG or that it didn't become systemic. You really need to get a second opinion and quickly. Where are you in CA? You should probably get to UCSF if thats the closest. I would recommend Dr. Meng.
www.ucsfhealth.org/adult/cgi-bin/prd.cgi?action=DISPLAYDOCTOR&doctorid=27371
You really need to get with a top specialist where they treat a lot of bladder cancer.
pat

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13 years 9 months ago #32615 by Linnea
Replied by Linnea on topic maintenance and/ or tirals
Hi. I am at UCD. I did look up Dr. Lamm's web site. My doctor previously declined to do maintenance after the 3 turb because I reported side effects with BCG. however, I was ok with that a year ago because he had put a hole in my bladder wall. I wanted to be sure that that was completely healed before any other instillations. However, there was nothing prescribed for side effects.
Now it is a year and I read the stats for recurrence (none for me so far), there appears to be a high recurrence before the third year out for grade 3.
a CAT and cystoscopy done in April was negative. Following cysto with bleeding that increased the third week out, with other symptoms. Bleeding has stopped. A cysto might disrupt a cis site causing bleeding. The site might be missed with the scope because its flat or in the urethra. A resident did the cysto with doctor present. Dr. not responding to my written card over two weeks ago when dr. out of town or to call yesterday afternoon.

thanks for your input. :S

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13 years 10 months ago #32604 by mmc
Replied by mmc on topic maintenance and/ or tirals
Welcome to the site. Sorry I didn't say that the first time.

BCG is the one of the standard treatments for T1G3, but not just the first 6 week course. There should be follow up treatments called maintenance. Check out this link from Dr. Lamm's website regarding BCG. BCG Oncology

The other treatment is Radical Cystectomy.

You say you had three TURBTs. Were there recurrences?

KC posted this link before for someone else with T1G3. That is what he had also. T1G3 Rule of thirds

Have you been to a major bladder cancer center since your diagnosis?

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...

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13 years 10 months ago #32603 by Linnea
Replied by Linnea on topic maintenance and/ or tirals
3 turb and 6 week BCG

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13 years 10 months ago #32602 by mmc
Replied by mmc on topic maintenance and/ or tirals
Was the tumor removed???

Have you had any treatment since removal?

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...

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