1 month 3 weeks ago - 1 month 3 weeks ago#58862by 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.
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
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.
"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.
Thank You so much for your replies. I am located on the western edge of IL, 4 hours from Chicago. I looked up NCI locations for Iowa and noticed The University of Iowa in Iowa City. This is much closer and is where I had my aneurysm surgery. My present urologist had mentioned previously that he may recommend me to Iowa City. My wife is going to call today and see if they can start that process. Hopefully, this will speed thing up. Thank You again Greg