I have read BCG have become unavailable so some patients and patients called around large hospitals and secured BCGs.
Another option is to administer Gemcitabine + Docetaxel while BCG is not available.
I had seen a posting here in this forum , of someone who has been treated by Dr. Joshua Meeks of Northwestern Medicine in Chicago. BCG became unavailable during maintenance course. Dr. Meeks put the patient to Gemcitabine + Docetaxel regiments, then put the patient back to BCG when BCG became available.
Your case is different from mine, except for CIS. What gives us comfort is likely different. Ultimately, we have to choose from the options that are available to us. That said; I offer the following thoughts.
No one knows how much treatment is the necessary amount for any individual. Dr. Lamm and the SWOG (SouthWest Oncology Group) produced massive research driven data based on "the Lamm BCG schedule" and a huge study population. Those results, which included the BCG induction and long-term maintenance schedule remain the foundation work for evaluating other options. HOWEVER, the data applies to the large group, and shows good GROUP results with the extended treatment schedule. AGAIN, the question remains, how little BCG treatment is necessary for any given individual ?
Perhaps the "smart" choice is to go with the group treatment plan. BUT, even on this board, you will find individuals treated with shorter or divergent treatments with good results. Researcher Dr. Michael O'Donnell is a BCG supporter, but has looked at some of the assumptions underlying Lamm's schedule. O;Donnell and Lamm and SWOG are worthwhile search terms for a deep dive into BCG info.
It may be helpful to talk to your doctor about WHY he seems not overly concerned at this point.
Perhaps s/he thinks you are showing a complete response ? Perhaps he is concerned about the side effects of BCG treatment on the bladder ? Perhaps he feels that regular evaluation of the bladder is best until (IF) CIS returns ?
Knowing what the doc would want to do if the CIS returns could be (has been for me) helpful and reassuring. Similar to looking at treatment schedules other than the Lamm/SWOG, which was the treatment I also started on years ago and eventually left.
Let your Doc or care team know you are uncomfortable with the unknown future of treatment. Hopefully, a plan can be made that addresses your concerns. There are always treatment options, and it is our right as patients to be fully involved.
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
The good news is that I had a negative cystoscopy today. This gives me a full year of negative cystoscopies. I'll get my cytology results in a week or so but my last three have also been negative.
The bad news is my NEC facility doesn't have BCG available for me to continue with the maintenance protocol. This concerns me since BCG has been so effective for me. The Dr. said I was in a good position and he and shouldn't be overly concerned about it at this point.
He scheduled me for a CT urogram and another surveillance cystoscopy in September.
I'm not sure if I should be trying to find another institution with BCG to continue the maintenance protocol or hold tight until September. Has anyone else had to deal with this? Not even sure where to call to see about BCG availability of if they would just provide me with three maintenance treatments. Any advise? Anyone know where BCG is available?
Before you decide, you may want to discuss with urology a few scenarios what if your disease does not responds to the next treatment,
"If we do Gemcitabine, what will be treatment schedule like?"
"If we do Gemcitabine, how will we know that Gemcitabine is not working?"
"If we do Gemcitabine and it is determined that it is not working, what will be the next treatment options, RC or another bladder preservation treatment?"
If we do BCG, what will be the regimen like, another try for 6 weeks induction + maintenance courses"?
If we do BCG. when we determine that another BCG is not working?
If we do BCG, what will be the next treatment, Gemcitabine?
I know someone who did not respond to T1HG+CIS after the first 6 weeks induction course, the urologist recommended BCG +i interferon with the standard regiment - 6 weeks + 3 years of maintenance. I mentioned this because even 3 weeks maintenance could have improved the response, the fact, your disease did not respond after the 6 weeks induction course may mean the chance of your disease responding to BCG alone may be so high. Accordingly, you may want to discuss if BCG+Interferon would give better chance for the disease to respond. BCG + interferon has been offered to those initial BCG did not work.
In this case, you may want to ask If we do BCG, what will be the next treatment, Gemcitabine.
Hi Sara Anne, Thank you very much. I totally agree with you. After my first round of 6 weeks BCG and the few weeks later with the scope my bladder looked good. I wanted to go ahead with the maintenance regimen but my urologist said he doesn't do it that way and cut me off. Not a good situation. Now 9 months later he wants to do the Gemcitabine for urotileal carcinoma in situ. I think I'm going to ask for the BCG again. Which was my thinking. Thanks lots Sara Anne. Les