It's good to hear from you and thanks a bunch for the prayers. I appreciate it very much.
I'm scheduled in a couple of weeks for some sort of XRay with and without contrast. I've never had this particular test before, and I'll be glad when it is over. It's just routine for BC patients at our clinic and it's aggravating, but I'm glad that my Doctor is being thorough.
Once again, it's nice to hear from you.
Age - 55
T1 G3 - Tumor free 2 yrs 3 months
Dx January 2006
Hi Rosemary: Haven't been on here in a while...I am so glad to hear of your good fortune and health.....I had my recheck cysto yesterday and too was ALL CLEAR....as you know I too have had real severe (according to my Oncologist) side effects with 6 of the 9 doses of BCG that I have received. I was diagnosed Nov 18th 2006....had TURBT to remove 4 tumors (large ones) and was TAG3....five weeks later changed to my present Oncologist and had another TURBT with 2 more tumors removed (different sites) and resectioned previous sites. Was given Mitomycin after this TURBT (Jan 8th) and then 6 weeks of BCG, was ALL CLEAR at recheck in April and had 3 weeks of maintenance BCG. Oncologist said he thinks my side effects are extremely severe and VERY RARE. With this information he suggested that we take the wait and see approach until my next recheck October 10th. I also spent the last two months at the Orthopedic Specialist with cortisone shots, fluid drainage and physical therapy for my right knee (that swelled up the size of a bowling ball for no apparent reason with BCG treatment #7 and remained so until drained 8 weeks later) - I still have pain but it is better.
I have taken actually taken guidance in reading about your struggles, knowing that "it's not just me" and I have so stated to the doctors. I am apprehensive about not receiving maintenance BCG with G3 tumors but also feel that if these side effects keep up then I will NEVER be able to take BCG when I really need it until of course there is "something" better.
Again Rosemary - we can celebrate our successes - we are winners to this point and with much grace will remain so. Take care friend,
"Grandmothers are just antique little girls...."
I betcha there are more than 01.% of people who can't tolerate BCG. As good a treatment as it is for high grade blc, the search is on and always has been for a less toxic treatment. This "urocidin" looks very interesting, supposedly much less toxic, in phase III trials and it works in two ways, both as immunotherapy ala` BCG and also as a chemo drug.
As for arthritic side effects, in my years listening to folks complain of them, it's true that very few end up with arthritic side effects. But you aren't the first woman I have met who has had these symptoms poo-pooed by their doctor, and there is nothing worse than having someone tell you your symptoms (make that side effects) are in your head. So in that respect your story will surely help someone who may need to recognize what is going on and is valuable.
You are certainly not alone with your reaction to BCG. Here's to never needing it again...
Rosemary, so good to hear you had another clear report! I see that your initial diagnosis was January of 2006 which means you have gone 1 1/2 years without recurrence. You are approaching the landmark time of 2 year mark free of recurrences then possibly the spacing of 6 moth cysto's rather than every three months. The upper scan you referred to - is it going to be in the form of an IVP with contrast? I had that done at the two year mark also. It is very reassuring when the report comes back "clear" on that. I am sure yours will be! We all appreciate your honest, caring and open approach on this forum.