Forum

× Welcome click the New Topic button to post

BCG and waiting

2 months 3 weeks ago #58863 by Jack R
GregIL

BCG shortage status is tracked by the FDA at:

https://www.fda.gov/vaccines-blood-biologics/safety-availability-biologics/cber-regulated-products-current-shortages

I checked as I am post here, there is NO shortage as of 12/9/2019. It is noted that supply will "be placed on allocation" when supplies run short.

From my experience, the BIG hospitals with a well-known cancer department get BCG when my local rural clinic can't even get a call back from their supplier.

I travel up to 400 miles for an appointment at a NIH Comprehensive Cancer Center Hospital when care is not available locally. My local doc understands. She is as concerned as I am, but she is caught in the middle. There is much to be said for having a nearby doc, even if you have a GREAT relationship with, even if you also have a doc in the university hospital hours away. ASK your doc for a referral to the BIG hospital; ask if it would be helpful.

That said, I expect a prompt reply to my questions and concerns. I have found it very helpful to ask, at a first appointment where there will be ongoing appointments, " Who do I call with questions and concerns ? Do you prefer phone calls or email for non-emergency questions ? Which is the best way to get a quick reply ? It really does help to cut down on sitting for hours, hoping the phone will ring.

That also said, in the beginning we all want treatment to start tomorrow or sooner if possible. Small clinics often can't move that fast, but they are nice to have for when an emergency arises. Sometimes we, as patients, have to accept the speed of medicine at teh different levels of providers.

Stay focused on what you want to accomplish (starting BCG soon). ASK all you healthcare providers how they can help make THAT goal happen quickly. Be prepared to expand your list of providers to those who CAN help.

Sorry to hear that you are facing the all too common frustration.

Best,
Jack

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# 3
Begin year 4 with cis
2/19 Chemo #4
9/19 NED again :)
1/2020 CIS is back...

Please Log in or Create an account to join the conversation.

2 months 3 weeks ago - 2 months 3 weeks ago #58862 by Alan
Frustrating to read about your situation. If I have learned anything from others is; do not get sick over the Christmas Holidays with Mondays included. Short staffed and vacations I am guessing is the problem. All I can do is second Sara Anne said about the University Of Iowa Bladder Center. It does have a great reputation with one Doc in particular named O'Donnell (I think that is his name) that is world renowned for his study and conferences. Do not give up!

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.

Please Log in or Create an account to join the conversation.

2 months 3 weeks ago #58861 by GREGIL
So here I sit still waiting to hear some news, good or bad. My wife has called the clinic several times since my original post. As of yet, she hasn't made it past the receptionist. Someone will contact us...Someone will contact us....Someone will contact us. This is getting a bit tiresome.

I called the University of Iowa Hospitals. Explained my situation, and asked the person I talked to about the availability BCG through their cancer clinic. She didn't know, but would put me in contact with someone who may be able to answer my questions. I was put on hold and there I sat, for more than 30 minutes. I hung up.

I hesitate to switch my care to the University, only to have my present Dr. suddenly call and tell me I can start treatment. On the other hand..........................

Thank you all for your responses, and I will continue to update on my progress. Whether there is any or not. Greg

Please Log in or Create an account to join the conversation.

2 months 3 weeks ago #58844 by DonaldK
GREGIL

I was in the same situation regarding the BCG shortage. I agree, checking with the universities and/or NCI hospitals is an excellent move.

Also, Look online for BCG research - I am in a SWOG (Southwest Oncology Group) study looking at the TICE (US version) and the TOKYO (EU version) of BCG being conducted by the original developers of this treatment method.

Being in the study I am guaranteed access to the medication for the entire course as SWOG has both strains 'allotted' for all patients involved.

I am in Boise Idaho, so not that big a city - we have an excellent cancer treatment center here, but it is not really associated with many of the huge cancer centers out there.

Have faith things will work out for you.

PS - you can find info about ongoing studies on line with a bit of google searching.

Ciao

Hi Grade T1 CIS

Please Log in or Create an account to join the conversation.

2 months 4 weeks ago - 2 months 4 weeks ago #58841 by Knifedealer
"My Dr. recommended 6 immunotherapy treatments, over a period of 6 weeks, with the drug BCG."

I just finished my "induction" phase of BCG: 6 treatments over a period of 6 weeks. I will echo Sara's comment below. The process was tolerable for me. For me, the worst part of the instillation (getting the BCG inside the bladder) is the worry prior. Poor sleep the night before. Anxiety while sitting in the waiting room and again once in the treatment room awaiting the return of the nurse after administering numbing agent. The procedure itself took only a couple of minutes and was (only) uncomfortable. Side effects after the first treatment were nil. Treatment #2 and #3 weren't much fun however. I had moderate to severe pain immediately after urinating accompanied by spasms and gross hematuria. Good news is that once I "flushed" the chemical agent out over the next 4-6 hours, drinking plenty of water, things returned to almost normal. These side-effects were significantly reduced after treatment #4. By treatment #6 (yesterday) the side-effects were 2 on scale of 1-10. Holding the chemical for the full 2 hour "dwell time" wasn't an issue during any of the instillations.

There are some things that can be done to minimize negative side effects from BCG. Folks here are happy to share what they've learned and to provide additional support along the way.

As we all know, there is a global shortage of this drug, and so far, I don't see that changing anytime soon. We have been in contact with my Dr. office and have been told, when he knows something, he will tell us.

When my cancer grade progressed from low grade to high a few months ago, my urologist recommended intravesical treatment using a "chemical agent." I asked him about the BCG shortage. He shared some concern about that with me, stating that he'd go with gemcitabine if BCG wasn't available. With that said, I was given full (50 mg) doses throughout this recent induction. When asked about it yesterday, the nurse said she is unaware of any interruptions or reduction in clinic orders. I'm being treated at a local clinic in a mid-sized city (Syracuse, NY pop 145,000) located in Central New York (8 county area of about 1.2 million people).

It's good you are looking to the University of Iowa for care. I find the "we'll call you when we know something" attitude troubling. Your "how long do I wait" question is a good one. I asked same question here when my first tumor was found. Much of the answer to that question would be driven by the grade and stage of your cancer. As Sara said, we can assume you have high grade, non-invasive cancer (as do I) since BCG is being recommended. In short, I would be proactive. NO WAY would I wait a year. When my grade went from low to high, I interpreted that to mean: the cancer has become more aggressive and it's time to get busy.

Best of luck to you. Please keep us posted on your progress and by all means ASK QUESTIONS. Knowledge is power and what I don't know could kill me.

Please Log in or Create an account to join the conversation.

3 months 3 days ago #58817 by sara.anne
The University of Iowa urology department has an excellent reputation so that would be a wonderful place for you to seek treatment .

Sara Anne

Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
Forum Moderator

Please Log in or Create an account to join the conversation.

  • Not Allowed: to create new topic.
  • Not Allowed: to reply.
  • Not Allowed: to add Files.
  • Not Allowed: to edit your message.
Moderators: Cynthiaeddieksara.anne

Users

Total Online: 2 Users and 2124 Guests 
Regor's AvatarRegor, eddiek's Avatareddiek

Legend: Site Administrator Global Moderator User Banned

Statistics

Today Total Opened: 0 Today Total Answered: 0 Latest User: rwswafmq
Yesterday Total Opened: 0 Yesterday Total Answered: 2
Total Posts: 53533 Total Subjects: 6997 Total Users: 8678