• Dantegirl

    Member
    February 7, 2019 at 12:23 pm

    Please keep us posted George! I’m worried about this too!

  • jack-r

    Member
    January 30, 2019 at 3:35 am

    Sheisdor7

    The American Cancer Society has a statement about bladder cancer and the occurrence in families taken as a group, on their website. cancer.org, linked below. The statement does not rule out a familial association.

    “Some people inherit gene changes from their parents that increase their risk of bladder cancer. But bladder cancer does not often run in families, and inherited gene mutations are not thought to be a major cause of this disease.”

    Perhaps such a statement, along with a similar one made by the NIH, gives rise to a cautious approach by your doctor. No one here will try to outguess your doctor.

    https://www.cancer.org/cancer/bladder-cancer/causes-risks-prevention/what-causes.html

    You may want to also review the NIH Bladder Cancer Genetics discussion at:

    https://ghr.nlm.nih.gov/condition/bladder-cancer

    Best,
    Jack


    6/2015 HG Papillary & CIS
    3 Years and 30 BCG/BCG+Inf
    Tis CIS comes back.
    BC clear as of 5/17 !
    RCC found in my one & only kidney 10/17
    Begin Chemo; Cisplatin and Gemzar
    8/18 begin Chemo# 3
    Begin year 4 with cis
    2/19 Chemo #4
    9/19 NED again :)
    1/2020 CIS is back
    Tried Keytruda, stopped by side effects
    Workin on a new plan for 2021
  • Sheisdor7

    Member
    January 29, 2019 at 11:09 pm

    My urologist is being extremely cautious as my sister also was diagnosed with T4 bladder cancer last April. Maybe he’s being too cautious??

  • jack-r

    Member
    January 29, 2019 at 4:28 pm

    The current (January 2019) BCG shortage leaves two choices for those of us who would be using BCG right now, including me. We can wait for BCG or accept another treatment.

    I will be trying (yet another) another option during this shortage. While I agree with Sara Anne’s statement, “Mitomycin is not as effective as BCG”, Mitomycin (MMC) is an effective treatment, and is one of the treatments of choice for those who fail to benefit from BCG. Some people respond to MMC who did not respond to BCG.

    From the long article linked below, “Consensus Document”, the following quote regards treatment for those who experience a “BCG failure”.

    “• After the first BCG failure, patients (who have not progressed) have several treatment options, including repeated BCG (or continued maintenance), BCG plus interferon, single-agent intravesical chemotherapy (for example, mitomycin, gemcitabine, or valrubicin), sequential chemotherapy (for example, gemcitabine–docetaxel) or device-assisted chemotherapy. “[end quote]

    BCG, if available, it the first choice because it has been shown to produce the “best” results for the” largest number” of patients, on a statistical basis. UNFORTUNATELY, What will work best for any particular individual is an unknown, and must be found through trial and error.

    The choice to wait or use an alternate to BCG is up to each of us with consultation from care team; it is an individual decision, based on the status of our individual situations.

    My bottom line is, “Don’t automatically reject good options when the (statistically) best option is unavailable”. Choosing to use an alternative now does not exclude the possibility of treating with BCG later. Talk to your care teamabout options open to you, in your situation.

    See the BCG use and alternatives discussion in:

    http://www.nature.com/nrurol/journal/v12/n4/full/nrurol.2015.58.html

    Title: “Consensus statement on best practice management regarding the use of intravesical immunotherapy with BCG for bladder cancer”

    Best to all
    Jack


    6/2015 HG Papillary & CIS
    3 Years and 30 BCG/BCG+Inf
    Tis CIS comes back.
    BC clear as of 5/17 !
    RCC found in my one & only kidney 10/17
    Begin Chemo; Cisplatin and Gemzar
    8/18 begin Chemo# 3
    Begin year 4 with cis
    2/19 Chemo #4
    9/19 NED again :)
    1/2020 CIS is back
    Tried Keytruda, stopped by side effects
    Workin on a new plan for 2021
  • sara.anne

    Member
    January 28, 2019 at 11:45 pm

    My response was to the information posted by Sheisdor7 in his response to you.

    Sara Anne


    Diagnosis 2-08 Small papillary TCC; CIS
    BCG; BCG maintenance
    Vice-President, American Bladder Cancer Society
    Forum Moderator
  • George9

    Member
    January 28, 2019 at 10:55 pm

    I have the high grade. Thank you.

  • sara.anne

    Member
    January 28, 2019 at 9:33 pm

    BCG is not usually given in the case of low grade non-invasive bladder cancer since it is not as effective as it is when the cancer is high grade. Use of BCG is usually reserved in low grade cases in case it returns….as it often does. I would ask your urologist if he really thinks it is necessary right now in view of the shortages.

    Mitomycin is not as effective as BCG.

    Sara Anne


    Diagnosis 2-08 Small papillary TCC; CIS
    BCG; BCG maintenance
    Vice-President, American Bladder Cancer Society
    Forum Moderator
  • Sheisdor7

    Member
    January 28, 2019 at 8:56 pm

    I was recently diagnosed with Ta bladder cancer, low grade. I was scheduled for my first BCG treatment two weeks from today, but was just informed that there is no BCG available with my urologist. He suggested we wait a few weeks to see if he gets some in. He did indicate we could start Mitomycin instead of BCG. My question is how long can I effectively wait for BCG or should I start with the Mitomycin treatments? I know the BCG is preferred. Any help you can give me would lower my anxiety.

  • sara.anne

    Member
    January 28, 2019 at 7:52 pm

    Yes, George, Merck has notified all their clients that there is now a shortage of BCG and that it may extend as long as October. Unfortunately, they are the only suppliers of this product and since it is a biological entity it is not trivial to manufacture.

    Our understanding is that Merck is allotting their supplies somehow based on past purchases. You should ask your urologist to get you on a waiting list so that you can get some as soon as it becomes available.

    Sara Anne


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

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