New to Forum - Recently Diagnosed - Treatment Question

2 years 3 weeks ago - 2 years 3 weeks ago #61218 by Alan
It is possible;e your digestive issues are related but, unlikely.

It almost sounds like a seasonal allergy issue. Of course, that is simply a guess as none of us are doctors. I live in South Texas (close to San Antonio) and many people run a low-grade fever for a few days, sometimes upset stomach due to allergy meds, malaise, etc due to ragweeds, mountain juniper (cedar) etc. Let's hope you solve what is ailing you.

DX 5/6/2008 TAG3 papillary tumor .5 CM in size. 2 TURBS followed by 6 instillations of BCG weekly with a second round of 6 after a 6 week wait.

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2 years 3 weeks ago #61213 by sara.anne
Glad to hear about the second opinion!!

BCG side effects vary so  much from person to person.  Mine were fatigue for a few days and urinary burning and urgency that got worse as the treatments continued.  I think the urinary symptoms were the worst.

It is hard not to attribute everything that happens to BCG, but I think you are probably correct that your GI issues might be due to something else.  

Sara Anne

Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
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2 years 3 weeks ago #61212 by johned1212
Update - And Followup Question.
After reading all the great advice in this forum, I decided to get a 2nd opinion at Dana Farber.   They did a separate pathology report and determined that the tumor did penetrate the lamina proria and their recommendation was to continue with 3 years of BCG maintenance treatments.   I completed my first 3 week maintenance treatment in September 2021 and my 2nd, 3 week maintenance treatment in December 2021.  Next one is schedule for July.   

My question has to do with side effects.   I have read that the treatments get progressively more difficult to tolerate.   My side effects are mostly in the couple of days following the treatment.   I feel like I have a fever, I have no energy, etc.   Do others have side effects that continue for long periods?    I am having other ongoing issues, like trouble eating without feeling sick, lack of energy, etc.  but I am thinking these are separate from BCG side effects.   (I tested positive for h pylori and received treatments but continue to have trouble eating and have dropped about 15lbs since all this began a year ago.)    I finally saw a specialist and I am getting and endoscopy Monday to have them look at my stomach & small intestine to make sure somehow I don't have an additional problem there.

I would be interested to hear from people who have had ongoing side effects to BCG to see if these digestive issues and energy issues have to do with that.    I also seem to get sick very easily.   My grandson brings home colds and stomach bugs from daycare and I always seem to catch it (others in our household don't) and the severity of them for me is pretty bad - quite a few days of being sick.    I thought BCG boosted your immune system to naturally fight the cancer cells.   Does it compromise your immune system in other ways?   Any information this topics would be greatly appreciated.   Thanks, John

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2 years 10 months ago #60721 by joea73
Though different urologists may have developed their own regimens for the treatment of non-muscle-invasive bladder cancer (NMIBC), I think the protocol which your urologist uses is not the current protocol many urologists use for high-risk non-muscle-invasive bladder cancer (NMIBC).  Note that any HG is considered as high risk except for a single tumor with TaHG which is less than 3 cm.   In your case, there are 3 tumors and T1, so it is classified as high-risk NMIBC. 

Around 2015, FDA and prominent urologists/researchers who focus on bladder cancer came to a consensus on the definition of adequate BCG treatment.   They came up with a new classification - BCG non-responsive when there is a recurrence of high-risk NMIBC after adequate BCG treatment was given.  The adequate BCG treatment is defined as the induction course of at least 5 BCG treatments plus the minimum of a maintenance course with at least two BCG treatments.   One of the reasons for defining the adequate BCG treatment to include the induction and at least one course of the maintenance is because the maintenance has shown improved the complete response rate for high-risk NMIBC which improved from about 50% complete response rate after the  6 weeks induction course only till above 80% after the completion of the first 3 weeks maintenance treatment.  Also, the induction + maintenance clearly show better results for T1HG.   (Dr. Ashish Kamat of MD Andersons )

Dr. Kamat explains the advantage of 3 weeks maintenance every 3-6 months protocol over other protocols in his presentation.

    Watch from 10:00

Another advantage in following the widely accepted protocol is most current and future studies of NMIBC will use the BCG non-responsive as the base for researches and drug development.  A case in point is FDA approval of Pembrolizumab (Keytruda by MERCK) immunotherapy use for those who do not respond to BCG treatment.  The clinical trial in which the FDA approved the use of Keytruda only included those NMBIC patients who had recurrence after the initial induction (5-6 weekly treatments)  and at least the first maintenance course  (2-3 weekly treatments).   Insurance companies usually have to cover for FDA-approved treatment but not if the patient does not meet the inclusion criteria of the clinical trial, for only BCG non-responsive NMBIC patients - those who had adequate BCG treatment ( induction course and at least the first maintenance course).    The concern I have is that if the protocol which your urologist uses such that 6 weeks induction course and puts you on surveillance by cystoscopy, then follow with another BCG only if a recurrence happens may prevent you from receiving the Keytruda immunotherapy treatment.   This is something you may want to discuss with your urologist.

Another example of the new drug for high-risk NMBIC is Vicineum by Sesen Bio.  Recently FDA accepted for filing the Company’s Biologics License Application (BLA) for Vicineum for the treatment of high-risk, BCG-unresponsive non-muscle invasive bladder cancer (NMIBC), and granted the application Priority Review

ir.sesenbio.com/news-releases/news-release-details/sesen-bio-announces-fda-acceptance-and-priority-review-its

Recently, the result of a study on high-risk NMIBC in the US VA health care system was published.   Though the study was to find out the cost of the treatment.  It showed those who received adequate BCG treatment ( at least 5 weeks induction course + at least 2 weeks maintenance course) had better results than those who had induction-only BCG treatment.  

" A total of 392 patients (95%) received adequate induction BCG therapy, and 152 (37%) received adequate BCG therapy. For all patients with high-risk NMIBC, the 10-year progression-free survival rate and disease-specific death rate were 78% and 92%, respectively"

www.practiceupdate.com/content/costs-and-long-term-outcomes-of-high-risk-non-muscle-invasive-bladder-cancer-treated-with-bacillus-calmette-guerin/116647/21/25/1

As noted in the above examples.  having the induction + the maintenance (adequate treatment) not only has shown higher efficacy over the induction only treatment but also pharmaceutical industries and bladder cancer research communities are already basing their drug development and researches on the criteria that the patients have the adequate BCG treatment, which is the induction + the maintenance.

You may not have a recurrence after the 6-week induction course, so what have I described above may become irrelevant, which I hope will be your case.  


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2 years 10 months ago #60713 by October28
Welcome, John. 

This gets better with time. And this forum is a great support. 

My experience was as Alan described: 6 initial BCG, then time off, then 6 more.  12 total. 
My MD, also Harvard educated and highly regarded, determined to do what yours recommends for you, partly in response to my intolerance after the 12th (6 plus 6).  We now monitor closely with cysto and biopsies. 

I am now 18 months from diagnosis/TURB, clear cystos and biopsies at exact intervals and feeling good.  As Alan mentioned, BCG also has side effects and each person differs on tolerance.  But your MD seems to think less is more for you -- good.  If the BCG procedure is difficult (I found it so but some do not), ask for Ativan or Valium to calm you an hour before procedure.  Pyridium (which you may have taken post TURB) is also good post BCG if you experience irritation.  

Stay postiive and know that you are not alone in this Forum. It does get better. 

Michael

Michael H.
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2 years 10 months ago #60709 by johned1212
Alan, Thank you for your response.   I appreciate you sharing your experience,   It is very helpful as I start this journey.   I am sure I will have more conversations with my doctor on next steps once I have completed my first 6 treatments.  I just wanted to gather as much information as I could so that I could go into those conversations with a better understanding of the choices and the consequences.  My gut feel, after doing a lot of reading, is maybe I should continue with some follow-up maintenance treatments, but I will keep researching and soliciting opinions.  

 It's encouraging to see others who have undergone these treatments and are still doing good.  I am glad you have successfully battled this and continue to be a resource for people like me.   Thank you!  John

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