BCG unavailabilty
Greetings. I was diagnosed early this year with NMIBC, have had two turbt procedures and am eager to begin preventive treatment. My surgeon has indicated that BCG is not available due to worldwide shortage, so she is recommending gemcitabine. I'm reading posts from guests who have had BCG treatments as recently as last summer, and it's disconcerting to think this gold standard option is out of my reach. Can anyone enlighten me? Is BCG available to some facilities but not others? Should I seek treatment elsewhere? Thank you for sharing suggestions/experiences.
Hi Laurel,
Thank you for sharing your story. Yes, there is indeed a worldwide shortage of BCG due to its difficulty of production. As you may know, BCG is a live bacterial culture, and in as much, it cannot be "made"; it has to be grown in very methodical ways from an original bank of bacteria "seeds" stored in France. Further complicating, there is only 1 manufacturer currently making BCG worldwide (that has FDA approval). That being said, smaller clinics in smaller municipalities would have a harder time securing BCG than a larger metropolis with a major cancer center. It may be worth a bit of research in your larger area. Please keep us informed as to how your treatments go.
Sending healing vibes,
Charles
Moderator / BladderCancer.netThank you for this information. My urology group in Austin, TX, is relatively small and of course M D Anderson cancer center is not that far away in Houston. Would I need to reach out on my own and start over with a new urologist at a new facility, or am I able to find out if M D Anderson has BCG for which I might qualify? Do hospitals share medications with smaller clinics for high risk patients? Based on what I've read, intravisical treatment with gemcitabine can be effective and at this time, it is the approach my urologist advises.
@laurelg - Just a suggestion - that would be to post a question on here asking if anyone in Texas is receiving BCG at this time. I have read that some people travel to receive these treatments. I did not have BCG so I would not be of much help in trying to locate it except to post on here and other sites. Good luck to you. Linda (moderator, Bladdercancer.net team member)
That's a wonderful question to post, Linda. Thanks for the great suggestion.
@laurelg - you are very welcome. I hope that you have responses that help you find BCG close to your home. My best. Linda ( moderator, Bladdercancer.net team member)
I'm elated to say my urology group has procured BCG for me, and I begin treatments later this week! No doubt I'll be back on the forum with further questions and to continue learning about my journey ahead through others' experience. The support and positive feedback has so far been great. Thanks so much.
@laurelg - Thank you. I am sure that the majority of us never expected to need to make difficult decisions like this but having the knowledge from a wide variety of sources including those who have been through it, certainly makes it easier to accept. My best as always. Linda ( moderator, Bladdercancer.net team member)
You are so right there Linda. Just wish I had found this community before my surgery. Happy Easter 🐣 and have a great day. Laura, Moderator, BladderCancer.net
