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newly diagnosed by Karenb

8 years 9 months ago #30511 by karenb
Thanks Steve. Yes, I've read about the possible joint pain. Since I have been dealing with Rheumatoid Arthritis for more than 35 years, a little additional pain isn't a problem, I might not even notice it if it even happens to me.
I have already come to realize how wonderful the people on this site are and how willing they are to share thier experiences and advice. I was reading posts on this site for a while before I actually signed up in Dec.
I guess I'm technically no longer in the "newly diagnosed" category since the intial diagnosis was in Oct and confirmation was Feb.
Got my ok on my PPD test yesterday, so BCG will start this coming Tues.

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8 years 9 months ago #30503 by stevegrimes14
Karen,

I have posted some thoughts on BCG and muscle/joint pain. Let me be clear, keeping the cancer at bay is more important that some discomfort. If the BCG does it job, you could be one the many here who monitor with cystos rather than more extreme treatments.

Also, come here often, these folks are the best in the world and the advice is from the heart and minds of committed patients and survivors.

Steve

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8 years 9 months ago #30461 by karenb
Went for 1st BCG treatment today, but it had to be postponed. They never did the TB test on me. So the nurse did that today. Stopping in on Thurs to have it checked then will start BCG next Tues. Everything will just be pushed back one week.

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8 years 9 months ago #30387 by mmc
Karen,

Good to hear. Yes, BCG is typical for CIS and is highly effective. Read up on it at the Southwest Oncology Group and Dr. Lamm. He's the foremost authority on it.

Some side effects are to be expected but the important thing is if you can tolerate it. If you get reactions early, they can decrease dose strength without reducing efficacy (according to Dr. Lamm).

Hope the treatment goes well for you.

Mike

Age 54
10/31/06 dx CIS (TisG3) non-invasive (at 47)
9/19/08 TURB/TUIP dx Invasive T2G3
10/8/08 RC neobladder(at 49)
2/15/13 T4G3N3M1 distant metastases(at 53)
9/2013 finished chemo -cancer free again
1/2014 ct scan results....distant mets
2/2014 ct result...spread to liver, kidneys, and lymph...

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8 years 9 months ago #30383 by karenb
Yes, Mike. I did. Surprised you remembered, but then everyone here is so kind and supportative. I had a TURBT done. The first time was just a cold cup biopsy. This time the did the actual TURBT. I'll be starting BCG on this Tuesday, 2/23. The path report confirmed the 1st report of CIS. The urol. did say that he will do the BCG route first and see how that goes. He said in some instances, a dr might recommed RC but due to my age and overall health, he thinks BCG should be tried first. Hoping for little or no side effects from the treatment. I had no problems whatsoever after removal of cath following TURBT, no burning, no spasms, only very slight blood in urine 1 day. So hoping and believing same will be true for treatments.

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8 years 9 months ago #30382 by mmc
Karen,

By the way, how did your appointment go? Didn't you have something scheduled for January 8th?

Mike

Age 54
10/31/06 dx CIS (TisG3) non-invasive (at 47)
9/19/08 TURB/TUIP dx Invasive T2G3
10/8/08 RC neobladder(at 49)
2/15/13 T4G3N3M1 distant metastases(at 53)
9/2013 finished chemo -cancer free again
1/2014 ct scan results....distant mets
2/2014 ct result...spread to liver, kidneys, and lymph...

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