Berryhill, I'm new to this forum--I started reading it because my brother is fighting bladder cancer, so I've mostly been reading and learning--and maybe someone with more experience can shed some light on this . . . but when you wrote that your doctor couldn't get Tice BCG until September, I thought maybe I'd better speak up. There's a Phase III clinical trial currently being done to see if Tokyo-172 BCG (a strain of BCG that's been used successfully to treat bladder cancer in Japan and parts of Asia for over 20 years) is as effective as Tice BCG. As I understand it, the problem is that the FDA won't allow the Tokyo strain to be imported into this country (despite it's having been used in Japan for literally years) until it's been proven effective in this country--which of course it hasn't yet, because it isn't yet legal to import Tokyo-172 BCG to this country. The clinical trial is being carried out at over 100 hospitals, including major cancer centers like MD Anderson in Texas and Sloan Kettering in NY; the only location in Georgia is a veteran's hospital in Decatur, I'm afraid.
I'm not recommending a clinical trial. I wouldn't do that anywhere, let alone on a public forum. But if you really are going to either have to wait until September for BCG (or go with an alternative), it might be worth looking into this one. As I understand it, everyone in the study gets BCG--either Tice or Tokyo-172. In any case, here's a link to the NCI's description of the study (you may have to copy and paste into your browser to get there): https://www.cancer.gov/about-cancer/treatment/clinical-trials/search/v?id=NCI-2016-00451&r=1
Canada reports a shortage, Great Britain seems to have availability; thoughts about alternatives to BCG are included below. There are a number of options that can be successful IF BCG fails to work - those are very worth considering.
There is lots to consider with your doctor(s). The following resources offer a starting point for research about options. I highly recommend that a trusted and experienced urological oncologist should help guide treatment choice during a BCG shortages.
United Kingdom (Great Britain)
Check the Macmillam Trust website or call the help line - number on home page.
The Trust serves a range of cancers, not just bladder, but should have a handle of BCG availability. The site chat board is reporting current administration of BCG for bladder cancer.
Canada - Canadian Urological Association
Statement on addressing the BCG shortage
There Are Alternatives to BCG, during a BCG shortage
The link below is to the 2015 Consensus document about BCG an alternatives.
Consensus statement on best practice management regarding the use of intravesical immunotherapy with BCG for bladder cancer
This 10 page document describes the use of treatment of bladder cancer, based on the use of BCG, while also including other treatments that need consideration in the case of BCG failure, relapse, intolerance, or refractory response.
Options for treatment, in the case of BCG failure, and thus candidates in times of unavailability, include intravesical gemcitabine, mitomycin, and docetaxel.
Other options to BCG are discussed.
This is a good starting point to understand SOME of the options to BCG that may be encountered during the shortage.
As always, you and your care team will need to determine the best options for you, whether BCG is or is not available.
Authors, all respected practitioners and frequent authors, include:
Donald Lamm, MD
Southwest Oncology Group; BCG Oncology
Michael O'Donnell MD
University of Iowa
Edward Uchio MD
University of California, Irvine
Ashish Kamat MD & H. Barton Grossman MD
The University of Texas MD Anderson Cancer Center
Link to article:
What's with this Bleeding ? 6/2015
DX: 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 , round 3
Begin year 4 with cis
Unfortunately, temporary shortages of BCG are not unknown. Tice (a subsidiary of Merck) is the only current source of BCG. BCG is a biological product, not a synthesized one and depends on the "bugs" to make it. If something goes wrong in the process they need to start all over.
You might call other urology departments in your vicinity but since they all get their BCG from the same source they are probably "out" right now also.
You might discuss with your urologist the possibility of using mitomycin instead. This is often used when a patient has a bad reaction to BCG or BCG is not available.
This is really an unfortunate situation, since BCG has shown to be quite effective in high grade bladder cancer, particularly CIS.
Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
Last week my "transitional bladder carcinoma" status was revised to "bladder carcinoma in Situ". My urologist wants to start BCG treatments for me. Problem is there is a supply shortage, and he can't get the med for me until September 2019.
Any suggestions where "TICE BCG Live for intravesical use" might be available. I would gladly travel anywhere to get the BCG treatment.