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Viewing 15 posts - 1 through 15 (of 24 total)
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  • #46152
    loafer
    Participant

    Hi

    I finished my first BCG treatment follow surgery which was unsuccessful.I had a second surgery and now the the urologist wants to do BCG again.I was doing some Dr google and found there is another treatment Mitomycin with a better success rate 37%-88.3%  BCG 21%-68.5%.Should I tell the urologist I want Mitomycin since BCG was unsuccessful the first time.Also has anyone tried EMDA Electromotive drug administration .

    Thank you

    Dan

    #46153
    Nightingale
    Keymaster

    Hi Loafer,

    Thank you for posting your question in the Forum.  There have been a host of posts from Marysue and Joe regarding Mitomycin.  In the ‘main’ Forum page, search for Mitomycin and you will see them all.   To help you, I am pasting the link to the search content. https://forums.bladdercancercanada.org/forums/search/Mitomycin/

    I hope this is helpful.

    My best,

    #46157
    Joe
    Participant

    Hi Dan,

    Do you know why the urologist wants to try BCG treatment again?     Was it because BCG prevented recurrence for several years till recently?   Was the original tumor CIS, TaHG, or T1HG?  What is the recurrence?

    I can answer some about intravesical chemotherapy, e.g. Mitomycin (MMC).

    BCG is 100 years old as vaccine for tuberculosis. The same BCG was discovered as effective for bladder cancers by Dr. Morales of Queens University 50 years ago.  Before BCG was approved for the treatment of non-muscle bladder cancers (NMIBC), different chemotherapy drugs including Mitomycin were used as intravesical chemotherapy for NMIBC.   In 1996,  SWOG – National Canter Institute (NCI) supported organization that conducts clinical trials in cancer published the result of it clinical study comparing Onco-Tice (Tice strain BCG) 50mg and MMC.    Both treatments were given 6 weekly induction followed by monthly for 12 months.  About  200 patients were assigned to BCG group and 200 patients were assigned to MMC group, and followed for  5 years.    Progression free survivals about the same, but BCG group had expressed less recurrence (50% ) vs MMC group (60%) at 4 year.   For most patients,  BCG is preferred choice as initial treatment for NMIBC.   But because mechanism of actions between how BCG treatment and MMC kill cancer cells are different, MMC is a good candidate for those tumors which do not respond to BCG.  But now more effective treatments such as Gemcitabine+Docetaxel sequential intravesical chemotherapy has shown to be very effective also for BCG Unresponsive.  And there are a few other options also.   EMDA Electromotive drug administration is supposed to help MMC to penetrate the cancer tissue better.   The treatment requires a specific equipment.  I believe it is used more in Europe, but I do not know which hospital has the equipment for EDMA.

    .

     

    #46160
    loafer
    Participant

    Hi Joe

    Guess I should of responded on my post and not a direct message .Will make a appointment with a oncologist and see about immunotherapy,Stem cell treatment or radiation if this BCG treatment does not work a second time.Electromotive drug administration sounds good to but it sounds like it in clinical trials will find out

    Dan

    #46168
    Joe
    Participant

    Hi Dan,

    I responded to your message.

    Most urologists I know are also trained also for oncology and they are called Urologic Oncologist.  I do not know a clear boundary between urologists and oncologist.   I think your situation is still best managed by urologist.   Since redoing BCG or intravesical mitomycin was suggested by your urologist, you may want to consider getting a second opinion from urologist who specializes in bladder cancer in a hospital which is affiliated with a university urologist department.

     

     

    #46173
    loafer
    Participant

    Hi Joe

    Thankyou for your response.I have a phone call with GP in the morning at 10.Urologist virtual talk between 2-4 and many questions on how to proceed with the next treatment this week acct BCG unresponsive.I live in Toronto and will see if  I can get EDMA treatment or find out why MMC is not used DR goggle says better response.Just found out about intravesical gemicitabine and valrubicin as a concoction.High grade in the lining,superficial,I want my bladder

    Thanks joe

    Dan

    #46175
    Joe
    Participant

    Hi Dan,

    I would be asking why the urologist is recommending another BCG treatment in spite of the fact there was a recurrence after 6 weeks of BCG treatment.    Maybe, the urologist is thinking that the recurrence is not because your tumor does not respond to BCG, but because missed resection because it was too small or there ware residuals beyond the resected area.   Or for some other reasons which only the urologist can explain.   Hope the meetings will be productive and please keep us updated.

     

     

     

    #46180
    loafer
    Participant

    Hi joe

    Thank you very informative I hopefully it helps people just starting in my position what to ask and what to do.Video call today will let you know

    Kind regards

    dan

    #46290
    loafer
    Participant

    Hi Joe

    Urologist canceled the virtual phone call will try to set up another one.Would still ask him about EMDA or stem cells.Also would it not be prudent to set up a appointment with a oncologist.My last BCG treatment is Dec 8 and Cystoscopy is Mar 11 so if BCG did not work want to be prepared for next treatment options.

    Kind Regards

    Dan

    #46294
    marysue
    Participant

    Hi Loafer:

    It is not uncommon to have recurrences while doing BCG treatments.  Sometimes it takes a little while for the immune action to kick in.  From what I understand BCG is still the gold standard for high grade bladder cancer.  Other options are considered if a patient does not respond to BCG or can’t tolerate it.  Other options can be Mitomycin C, BCG with Interferon which is a chemo agent to boost the BCG.  Other chemo agents are Epirubicin, gemcitabine and doxatacel.  The newest thing is combining Gemcitabine with Doxatacel.  With that option one drug is put in the bladder for about an hour, drained out and then the second drug is instilled for the second hour and then drained out.  I believe that the treatment cycle with this is a set of 6, once a week for 6 weeks and then monthly after that for a period of time. GEM/DOC is reportedly a good second option instead of BCG.  Its efficacy is very comparable to BCG.  This treatment regime got approval during the BCG shortage. As for the effectiveness of EMDA I can’t comment as I don’t know anyone that has tried it.

    I know that your anxiety is very high from having had a recurrence while doing BCG.  Rather than relying on Dr. Google, I second what has been said.  Have a heart to heart with your urologist about why he is recommending another round of BCG.  There may be some reasons that you are not aware of.  Ask questions about other treatment options and if any of them would be suitable for you as an alternative.  If he says no, ask why not so that you get a clearer understanding of his line of thinking.

    There is a considerable difference between immunotherapy and chemo agents.  BCG works to stimulate your immune system into gear to recognize the development of potential bladder cancer and then the immune system activates to eradicate it.  This hopefully will delay any future recurrences and/or progression. With chemo agents they attack any cancer cells that might be present.  It too, can help prevent recurrence and/or progression.  There are many pros and cons to each and that is what must be weighed for each patient.  Some of the reasons can be age, the type, location, stage and grade of the bladder cancer, patient’s other health conditions if any, patients reactions/allergies to certain medications. The other thing to be considered is the type and amount of side effects that a patient has experienced with their current regime of bladder cancer treatments. That all needs to be part of your next conversation with your urologist.

    Another reason is the urologists training and personal experience with bladder cancer.  Treatment recommendations and protocols can vary between urologists.  I’ve had two urologists and their approaches to my care have been quite different.  My first was into a more frequent use of antibiotics and having cystos more frequently.  My second one was the opposite but he is more into making use of post TURBT bladder instillations.  Both were (1st uro has retired) and are highly trained professionals so I have learned that I just have to trust their judgement as they have the skill and training to make the call when it comes to my care.  That being said, I do reserve the right to ask questions about their recommendations.  I had a tougher time getting answers out of my first urologist as he was not the most personable.  My current uro is great and will give you answers to help come to a decision.

    Hopefully this round of BCG has done the trick and you will have a clear cysto in March.  If you are clear, then that would be the time to discuss next steps in terms of any future treatment sets, follow up check ups and tests.  If you are not clear, then obviously it is a similar conversation which would revolve around the fact that you have completed the BCG but have yet another recurrence – where does it go from here? And again that would depend on the pathology report.  When bladder cancer recurs it is usually the same type, stage and grade but not always.  I had the exact diagnosis the first two times and a completely different type of bladder cancer the third time.

    The last suggestion I have is when talking to your urologist, couch your responses and questions from a wanting to learn perspective.  If you rattle on about being on Google, many professionals get a bit rattled because they feel like you are taking a combative approach even when you are not.  The other danger of doing too much online research is that you can go down a lot of rabbit holes and scare the crap out of yourself and read a lot of stuff that doesn’t pertain to you even though it may appear that it does.  Been there, done that. So, I would refrain from mentioning that you have been online and just make a list of questions based on your situation.  Hope this helps.  Best Wishes going forward.  (((HUGS))))

    #46295
    Joe
    Participant

    Hi Dan,

    Perhaps,  you may get more relevant answers from urologist if the question is more open ended.  For example, how does  she or he determines if BCG is not working and what kind of bladder preservation treatment options are available in such case.

    In regards to oncologist, most urologists I know have had additional two years training in oncology so urologist looks after oncologic treatment local to bladder, i.e. intravesical chemotherapy.    For systemic oncologic treatment such as neoadjuvant chemotherapy before cystectomy and systemic chemotherapy or immunotherapy for advanced bladder cancers are dealt by oncologist.   Now, there is a clinical trial going on for  BCG plus Pembrolizumab (Keytruda) for BCG Unresponsive.  I don’t know who are managing in this case as BCG is instilled to bladder and immunotherapy is administered intravenously.

    I think there are multiple choices for bladder preservation treatment for BCG unresponsive.   I hope you won’t need it.  But, for your reference,  below are treatment already used, soon to be available, and on clinical trial for BCG Unresponsive that I am aware of.

    Available now

    Gemcitabine and Docetaxel  Sequential Intravesical Chemotherapy   (two different chemotherapy drugs are instilled to bladder one hour apart)

    Mitomycin C (MMC) or Gemcitabine Intravesical Chemotherapy (One chemotherapy drug is instilled to bladder)

    Pembrolizumab PD-1 checkpoint inhibitor immunotherapy :  It was approved by FDA a few years ago for BCG Unresponsive.   It is systemic treatment administered intravenously.  Though it showed durability, the complete response rate at 2 years was about 20%.   I am not sure if it is available in Canada.

    Valrubicin (Valstar) :  It was approved in 1998.    But,  Event Free Survival (EFS) was jus above 15% at 12 month.  So,  I do not think  it is used often now, especially now GEM/DOC has shown to be more effective.

    Approved by FDA.  Waiting for Health Canada approval?

    nadofaragene firadenovec-vncg (Adstiladrin)  –  Adstiladrin is adenovirus which can cause cold like symptom but toxin was eliminated.  Each Adstiladrin (virus)  contains DNA for Interferon alha-2b.  Once Adstiladrin enters into a cancer cell,  the DNA is released in the cancer cell, then DNA -> mRNA -> Interferon alpha-2b conversion happen, then Interferon alpha–2b causes anti cancer activities.   1  ml of Adstiladrin contains 30 billion viral particles and  73 ml is given per treatment.

    Pending on FDA approval

    BCG + N803 (Anktiva)  Interleukin 15 based Natural Killer (NK) cells activator – decision expected by April, 2024.   Anktiva was expected to be approved this spring, but FDA rejected it not because of lack of effectiveness, but because ImmunityBio’s contracted 3rd party manufacturing did not meet the requirement for Good Manufacturing Process (GMP).  ImmunityBio resubmitted the application to which FDA agreed to complete the review by April, 2024.   Anktiva was highly anticipated by urology community as the clinical trial showed 70% complete response rate at 2 years for CIS.    It is noted that BCG+N803(Anktiva) are treated locally by instilling into bladder.

    <b>Clinical trials accessible in Canada</b>

    Photo Dynamic Therapy by Theralase:     Ruthenium based photosynthesizing chemical compound (Rutherrin) was developed by McFarland lab in Acadia University.   Theralase is a health care laser equipment manufacturer.   Rutherrin has similar molecular structure as porphyrin which when exposed to light produces reactive oxygen species (ROS) damage cancer cells which lead to cell death.   In treatment, Rutherrin is instilled into bladder and voided after one hour.  Then the whole bladder wall is exposed to green laser light to activate photosynthesis activity of Rutherrin to damage cancer cells.  Typical side effects include urgency to void.

    BCG +  Pembrolizumab (Keytruda) Immunotherapy (systemic):  As mentioned before, Pembrolizumab immunotherapy had shown not that effective with less than 20% complete response rate at 2 years, Merck- the manufacturer of Pembrolizumab decided to combine it with BCG expecting better effectiveness.   One hurdle is immunotherapy is systemic so will have more systemic side effects.

     

     

    #46308
    loafer
    Participant

    Hi Marysue

    Thank you for your response.Will have to see my urologist and get a referral to Princess Margaret hospital cancer center here in Toronto.He mentioned if this BCG doesn’t work that is the next step.Like you and Joe said need to ask more questions.

    Kind Regards

    Dan

    #46309
    loafer
    Participant

    Hi Joe

    Thank you for the many treatments that are available.Will see what is approved here in Canada.Not sure if I should run it buy my urologist or wait for when I get my appointment at the cancer hospital.

    Kind Regards

    Dan

    #46331
    loafer
    Participant

    Hi Joe,

    Finally had a virtual call with my urologist.My first question was why did you have me do BCG treatment again when the first treatment was a failure and there was so many different options including MMC?  He deflected the question and said option 2 surgery or option 3 .appointment with Princess Margaret cancer center.I told him make my appointment.Seems to me he just wants surgery.Sent a request to my doctor for another oncologist  to get a second opinion waiting for a response will keep you in the loop.

    #46332
    loafer
    Participant

    Hi Joe,

    Finally had a virtual call with my urologist.My first question was why did you have me do BCG treatment again when the first treatment was a failure and there was so many different options including MMC?  He deflected the question and said option 2 surgery or option 3 .appointment with Princess Margaret cancer center.I told him make my appointment.Seems to me he just wants surgery.Sent a request to my doctor for another oncologist  to get a second opinion waiting for a response will keep you in the loop.

    Kind Regards

    Dan

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