First BCG Maintenance Started: Half Dose 40Mg

1 month 3 days ago #60853 by joea73
Hi Bills,  I am sorry that I might have confused you much.  I was writing the post while I was in ER and it was almost 5 AM and I had waited over 5 hours for my turn, so my mind was not clear, and typing long text on a cell phone was not easy.    I was there for non-bladder cancer-related matters.  I am back home as the ultrasound showed normal.  I will clarify what I had meant after a few hours of sleep.

best 

Please Log in to join the conversation.

1 month 2 days ago #60854 by joea73
I will answer your questions.  First I suggest you watch the video webinar by Dr. Michael O'Donnel of University of Iowa.  The webinar was presented in 2013 but it covers the whole aspect of the treatment for non-invasive-bladder cancer, including BCG treatment.  It answers many questions you have.  The other one is the paper published in 2015 by several experts on BCG treatment.  The author includes Dr. Lamm, Dr. O'Dommel. Dr. Kamat and others who are not clinical doctors but also have been involved in researches.

Webinar


Consensus statement on best practice management regarding the use of intravesical immunotherapy with BCG for bladder cancer
www.nature.com/articles/nrurol.2015.58

It is noted that Dr. O'Donnel had been using 6 weeks induction, then another 6 weeks, then maintenance in his 2013 webinar, but the expert consensus statement in which he was one of co-authors says the best practice is 6 weeks induction, then 3 weeks maintenance + subsequent maintenance.   So, 6 weeks  + another 6 weeks  + maintenance had been used in the past, but now 6 weeks  + 3 weeks (1st maintenance) + other maintenances. is what the experts recommend.  This answers your first question.   

I think it is good that you had paused after the 2nd treatment to avoid severe side effects,  Dr. O'Donnel expresses his concerns in Q&A that some urologists try to push it through with more BCG treatment even seeing significant side effects.  

In terms of 25ml saline vs 50 ml,  I am only stating that 50 ml saline is specified in the product label of not only SII ONCO-BCG but also MERCK TICE ONCO-BCG and Japan BCG Tokyo strain BCG.    I do not know how they ended up specifying 50ml in the first place.   It is interesting to know the history of BCG treatment for bladder cancer.  BCG treatment for bladder cancer was first established by a Canadian Urologist Dr. Morales in 1973.  He tells that the reason he used 6 weeks of induction was that when he ordered BCG from the manufacturer of BCG for tuberculosis, it came in 6 vials.  It just turned out that later study found out that  6 weeks of BCG treatment was the most effective.

You are doing great.   I know you are trying very hard to cure your dad's bladder cancer with his bladder intact.  That is good, and it is highly likely that your dad will keep the bladder.  Also, don't be stressed out on a few hurdles you encounter for saving his bladder.  I have known several people who chose and sometimes had to remove the bladder to save their lives. Dor most of them, the lifestyle has not changed from prior to the removal of the bladder.  So, by a remote chance, that the removal of the bladder has become considered necessary, there will be some adjustment but overall his lifestyle should not change much.   You take care of yourself too.

best
The following user(s) said Thank You: Alan, Bills

Please Log in to join the conversation.

1 month 17 hours ago #60859 by Bills
Hi Joea73 ,

Thanks for you detailed answer. I went through the webinar and post as well. As you mentioned , we did the 2nd dose BCG with 50ml saline and it was a right to make it to that concentration in order to fill the bladder. Also I was telling my father to change the orientation from left , right , up and down so that bladder gets wet all the way.
Unfortunately , we had to stop the BCG after 2nd dose as we don't want to see what we saw in past. Uro told us to wait and watch. I think he may decrease the dose in next maintenance which is due in Dec 2021. I will make dad mentally strong for it to take all the 3 doses which can even be 20mg or less. I think he can take that.  I just need help from the Ultimate Authority & that's enough for me and I have firm believe He will help me cure my father. 
I salute all you guys for being so strong through all this tough journey. Everyday is an inspiration for me. Everyday I love my father more 
and I smile with him to keep him happy and engaged. I know its not a medico fight only , its an emotional and intrinsic fight as well.
God Bless all the fighters of this forum.
Special thanks to Alan, Joea73 and Sara
I love u 
Respect.

Please Log in to join the conversation.

1 day 8 hours ago #60880 by joea73
Hi Bills,

I hope you and your dad are doing okay and trust that both have been vaccinated for covid-19.

In terms of changing the positions for BCG, I always thought that was the case but I have noticed that nowadays, many hospitals are not requiring rotating the body. Having said that,  I see many patients in forums that  they do it away because there is no  harm for doing the rotation. . Also a patient of Johns Hopkins was told that there was one spot in the bladder where BCG is hard to get to, and recommended the patient to roll.  So, I think it is good that you have your dad change the positions. 

I am not sure if reducing to 20mg is enough to reduce the side effects sufficiently for your dad.   

In the webinar,  though it was 2013, by Dr. Michael O'donell, he mentioned to the audience to have the urologist to contact to him
if the urologist is not familiar with dealing with side effects by BCG.  Since you have a good relationship with the urologist,
you may suggest the urologist to contact Dr. O'Donnell and get his input also   Below is the link to Dr. O'donnell contact information.

medicine.uiowa.edu/urology/profile/michael-odonnell

 
best

Please Log in to join the conversation.

18 hours 18 minutes ago #60882 by Bills
Hi Joea

Yes we are fine and thanks for reaching out. I am vaccinated but my father is still scared of vaccine as he has perception that it might change its DNA and since he as Ca diagnosed , he thinks DNA changes will make it worst. Which is not the case as I checked with Uro and Onco doctors both and they suggest its a must for him. Trying everyday to convince him. 

Regarding the dosage reduction to 20mg, Uro suggested we will perform a cystoscopy in Sep-Oct and based on that he would suggest further BCG regime.

Regarding the shifting of position, I have researched a lot for it and also listen to webinar of Dr. Ashise Kamat from Anderson's hospital who suggested that this practice was followed earlier but now a days its not used. Reason being bladder is a balloon like structure and it expands as much as fluid is present inside it , so once bladder is filled with BCG , nature of the organ is that it will get in touch with all BCG instilled in bladder. But its a good if you change the position so as to make sure BCG paints all the surfaces of bladder. 

Thanks again for the link to Dr. O'Donnell. It would be great if we can reach him and he replies. Does he replies over the email?

Rest all is fine and I am constantly and aggressively make follow ups and surveillance for the father. Last week we had USG and all blood test like CBC, LFT, KFT, PSA, VitD , Calcium, Iron , Potassium and all other test. Just making sure his parameters are suitable.


I trust the Ultimate Authority and I have hope that my dad will be cured.

I thank you and your suggestions 

Thanks to Sara and Alan as well.

You are like family now.

Respect N Regards.

Please Log in to join the conversation.

Moderators: Cynthiaeddieksara.anne