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  • maintenance and/ or tirals

    Posted by Linnea on June 17, 2010 at 10:23 pm

    HI, my first post. I am a little over a year from diagnosis
    T1 high grade with tumor > than 5cm. I am interested what the options for maintenance programs are other than 3 month cystos. Also interested in anyone involved in clinical trials for non-invasive bladder cancer grade 3.

    sara.anne replied 14 years, 8 months ago 4 Members · 6 Replies
  • 6 Replies
  • sara.anne's avatar

    sara.anne

    Member
    June 19, 2010 at 5:48 pm

    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
    Forum Moderator
  • 's avatar

    Guest
    June 19, 2010 at 12:58 am

    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.
    http://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

  • Linnea's avatar

    Linnea

    Member
    June 18, 2010 at 11:29 pm

    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

  • mmc's avatar

    mmc

    Member
    June 17, 2010 at 10:59 pm

    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 system

    My opinions are my own and do not reflect the opinion of ABLCS or anyone else. I am not a doctor nor do I play one on TV.
  • Linnea's avatar

    Linnea

    Member
    June 17, 2010 at 10:49 pm

    3 turb and 6 week BCG

  • mmc's avatar

    mmc

    Member
    June 17, 2010 at 10:41 pm

    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 system

    My opinions are my own and do not reflect the opinion of ABLCS or anyone else. I am not a doctor nor do I play one on TV.

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