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  • Doc says BCG not available

    Posted by RosieF on November 25, 2020 at 11:26 pm

    Hello everyone. My long term boyfriend was diagnosed with bladder cancer. T1, High grade. In 6 weeks, they will do another TURBT to make sure they are correct and they got everything in the initial diagnosis. What concerns me is the doctor today who went over the pathology report with us said it is impossible to get BCG. We live in a big city, Miami. He has insurance through the ACA, I don’t know if that has anything to do with it. I know there is a shortage, but wouldn’t there be a wait list or something?
    I’m concerned because it is a high grade, and also because his brother has been fighting cancer, including bladder cancer for some years, so something genetic is going on and it just seems important to try to prevent a recurrence as best we can.
    I appreciate any feedback at all that might help.
    Many thanks,
    Rosie

    mikequestions replied 3 years, 11 months ago 5 Members · 9 Replies
  • 9 Replies
  • mikequestions

    Member
    December 1, 2020 at 12:17 am

    [quote=”RosieF” post=60203]We managed to get an appointment with a urological oncologist at Sylvester. At least the nurse sounded more optimistic, she said our doc uses BCG. I know it doesn’t work for everyone anyways but it’s ridiculous for a doctor to say no one can get it when that’s not true. At Sylvester at least I feel like we can get good guidance so I am relieved about that.[/quote]

    The BCG shortage is unpredictable and is likely allocated as Sara Anne suggested. I’ve put some thought to this, and have decided that if my urologist ever tells me that they have no BCG when I need it, I’ll go find another BCG provider, even if it’s not covered by my insurance, even if I have to pay for it out of my pocket. I want the best chances of beating this disease, and I believe that to be with BCG treatment.

    Though I’m grateful to Merck for producing BCG, it seems unconscionable to not produce enough supply to meet the demand, simply because they do not make enough money from the production of BCG to make it worth their while. Ultimately, people have, and will die because of this. It seems odd that they don’t just up the price of the treatment to make it more lucrative for them, just like every other major pharmaceutical company does.

  • mikequestions

    Member
    November 30, 2020 at 11:54 pm

    [quote=”RosieF” post=60202]Hi, Mike. Marvin gets insurance through the ACA too. It’s open enrollment, Marvin has the hmo which so far is pretty good on keeping costs down. But we’ve never been faced with something like this. Do you have a policy you would recommend? Ok to message me if you prefer. And thanks for the info.[/quote]

    Hi Rosie,
    I couldn’t figure out how to message you, or if it’s even possible with this forum.

    My insurance is through a local hospital in my area in Oregon. The reason I originally went with this insurance, was that my primary care doctor was covered by this policy and wasn’t covered with other policies available through the ACA. Because I’m self-employed and my income is too great, I pay for 100% of the cost of the insurance. Fast-forward a few years, and that insurance no longer covers me to see my primary care doctor, so I retained the insurance and dumped the doctor. Now that I have that I have bladder cancer, I need to stay with an insurance policy that supports the urologist I go to. Long-story-short, I don’t have any recommendations for your boyfriend, regarding insurance. It really sucks that I can’t have insurance that allows me to go to my urologist, and keep the same primary care doctor.

  • sara.anne

    Member
    November 29, 2020 at 8:43 pm

    BCG is in limited supply and some reports indicate that Merck is shipping it to doctors based on the size of previous orders. Thus, a clinic with lots of bladder cancer patients over the years which has used a lot of BCG previously will be more likely to receive it than one with fewer previous patients. In some areas there does not appear to be much of a shortage and in others no one has it.

    You have done the right thing to check around to find where some is available.

    Sara Anne


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

    Member
    November 29, 2020 at 7:28 pm

    We managed to get an appointment with a urological oncologist at Sylvester. At least the nurse sounded more optimistic, she said our doc uses BCG. I know it doesn’t work for everyone anyways but it’s ridiculous for a doctor to say no one can get it when that’s not true. At Sylvester at least I feel like we can get good guidance so I am relieved about that.

  • RosieF

    Member
    November 29, 2020 at 6:06 pm

    Hi, Mike. Marvin gets insurance through the ACA too. It’s open enrollment, Marvin has the hmo which so far is pretty good on keeping costs down. But we’ve never been faced with something like this. Do you have a policy you would recommend? Ok to message me if you prefer. And thanks for the info.

  • joea73

    Member
    November 29, 2020 at 5:53 pm

    Below are the results of various studies.

    1. BCG is superior to mitomycin alone in term of recurrence free and progression free survival rate.
    2. Different BCGs give comparable efficacy and side effects.
    3. Combination of chemotherapy generally gives better recurrence free period than single chemotherapy
    4. Thermal chemotherapy generally gives better recurrence free period than non thermal chemotherapy.

    So, below are some options if you live in Miami and you cannot access to MERCK Tice BCG and choose to seek other than mitomycin alone treatment.

    1. Call other hospitals and clinics such as Moffitt if they have BCG available.

    2. Participate in the clinical trial of Tokyo-172 strain BCG. Two locations in Florida are listed below.
    Benefits of the clinical trial. No need to worry about the shortage during the treatment.

    3. Higher efficacy intravesical chemotherapies. These may not be available near where you live.
    Gemcitabine+Docetaxcel sequential (heated) – University of Arizona
    Gemcitabine+Docetaxcel sequential – not heated – University of Iowa, Northewstern Medical

    Ask the urologist if they offer anything other than mitomycin alone treatment.

    4. Ask the urologist what is the strategy if there is a recurrence after the 6 weeks mitomycin treatment.

    5. Ask the urologist what to do when BCG becomes during and after the treatment by mitomycin.

    Clinical Trial of Tokyo-172 BCG

    University of Florida Health Science Center – Gainesville
    Phone: 352-273-8010
    Email: cancer-center@ufl.edu

    Tampa
    Moffitt Cancer Center
    Status: Active
    Contact: Site Public Contact
    Phone: 800-679-0775

    https://juniperpublishers.com/ctoij/pdf/CTOIJ.MS.ID.555798.pdf

  • mikequestions

    Member
    November 27, 2020 at 3:31 am

    Rosie,

    My insurance is through the ACA, I have the same diagnosis as your boyfriend, and I have just gone through the 2 TURB’s, and just had my 2nd instillation of BCG. My hospital said they get it when they get it, and that they’d schedule me for my treatments when it came in, but usually it’s around 6 weeks from their supplier. Because your boyfriend will have his 2nd TURB in 6 weeks, and then it’s likely there will be another 6-8 weeks of waiting until BCG treatments would start, I would think they would have no accurate way of being able to forecast that far ahead. I’d push back, and don’t be afraid to ask for a 2nd opinion on the BCG.

    …My urologist had nothing to do with the ordering of the BCG – This was done by his staff. I’d talk to those person(s).
    …He doesn’t even do the BCG instillations – This is done by a nurse.

    Happy Thanksgiving! Hang in there!
    Mike

  • sara.anne

    Member
    November 26, 2020 at 4:30 pm

    This “shortage” business with BCG has been going on for several years now. When it is not available, many urologists use mitomycin instead and it seems to be almost as effective. If the diagnosis is non-invasive high grade they will want to do treatment as soon as possible and mitomycin would be a good alternative.

    Sara Anne


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

    Member
    November 26, 2020 at 2:15 pm

    I had my turbt and then had to wait over two months for my doc to get the bcg. They kept saying there was a shortage and it was on order. It finally came from a lab over a hundred miles away.

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