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Clean Cysto at 2 years 6 months no recurrance

10 years 10 months ago #19360 by DIB
Rosemary:

I've tried to send you a private email for two days but get error message which I have reported to the BCWC "back office". In meantime, if you do not mind, can you try to send me a private email so I have your email address?

Thanks, and stay well,

David

Male Dx T1G3 5/08 @ Age 59. TURBT 5/08; TURBT+40 mg MMC 6/08; BCG (6) 7/08-8/08; Cysto & TURBT 9/08; BCG Maint(3) 10/08, 3/09; 7/09; 11/09; 5/10; & 1/11. Clean cystos 2/09, 9/09, 3/10, & 10/10.

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10 years 10 months ago #19329 by Julie
Hooray for a clean cysto. It's wonderful that you got some good news. I had not heard of methotrexate until the mention here. I looked it up and can see why your arthritis doctor thought of it.
I think it would be difficult to deal with a clinic where they limit your options for treatment. I don't know what your alternatives are but it sounds like it is a good time to consider what they are for future reference.

I don't know about scaring people. I think we need to be fully informed of the repercussions of treatment even if it is uncomfortable to hear them. Julie

Volunteer Coordinator
ABLSC

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10 years 10 months ago - 10 years 10 months ago #19308 by Rosemary
Yes, David, I seem to be a reluctant part of the cast in a strange bladder cancer scenario down here in New Bern, NC. Our Urology Clinic discontinued usage of Mitomycin C last year after the report of a death directly related to administration of Mitomycin C on a perforated bladder. And yes, after discussing this issue last year here at the forum, I am aware that no other clinics are taking the same drastic step of pulling this drug off the shelf.

As far as the psoriatic arthritic response to BCG goes, once again I feel to be in the bubble. Your Derma Doc is right, there is about .001% chance of this reaction in the general population. When the arthritis hit me (after 10th instillation) and I came here to the forum to talk about what was happening, I was told that I was frightening people. I can tell you that I was more frightened than anyone else!! (Point taken, it is not my intent to discourage people from treatment) 2 weeks after the 10th instillation, and after having taken good exercise the night before, I woke up the next morning and I couldn't walk!! The good news for you is that you and your Doctor have a head's up on the possiblilites of this reaction. Even after this happened to me, I had to search and search and research to find documentation on the Internet and write to Dr. Lamm to hear his expert opinion about this BCG reaction and then, I had to convince my Doctor what was causing this sudden, severe arthritis. That was no easy job either!!

I have very little placque psoriasis on my body, just a little at the hairline and on the elbows. I rarely ever bother to medicate it. So, the amount of psoriatic placque probably has nothing to do with the amount of reaction...

Just by the by, I'm also having other chronic immune system issues as a result of BCG. Yeast infections, vaginal infections, etc, though I haven't had a sinus infection in a while, and the arthritis is MUCH more tolerable.....I will say it again, and not to frighten anyone, because remember, I am in a bubble that no one else seems to be in, but BCG did a number on me.

Still, I am glad that I did the 12 treatments and I would do it again....

Gosh, it's good to talk to you....thanks for listening...good luck with your treatments. Don't let me frighten you, but, I'm glad that since it happened to me, you have more of chance to see it coming, if it comes....

Your Bud,
Ro

Rosemary
Age - 55
T1 G3 - Tumor free 2 yrs 3 months
Dx January 2006

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10 years 10 months ago #19304 by sarahlee
that is good news:) glad to hear it

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10 years 10 months ago #19300 by DIB
Rosemary:

Where are you? What reason for not doing MMC does your uro give? I have not heard of docs or clinics in northeast where I am located refusing or discouraging MMC. Is it personal preference by doc or an edict from doc's insurance company due to some adverse MMC claim?

I also have psoriasis & checked with my derma doc who just does psoriasis. She first wrote: "I had not heard of this concern re bcg before but googled and saw the kinds of references you mention. Worse case scenario, you develop a problem with worsening psoriasis or psoriatic arthritis, you would most likely be a candidate for methotrexate which usually is considered a systemic med of choice for someone with a history of recent internal malignancy. Methotrexate is not a hot in vogue medication like the biologic injections (which we can't give with a recent history of malignancy) and there are some probably low risks re impact on the liver, but it is a gold standard therapy and can give excellent benefit. I will have to do more reading and query my friends in rheumatology. Good luck with everything and if I don't get back in touch with you within a week, could you email me again? Please keep me posted on how you are doing."

A week later after doing lit search & checking with colleagues, she wrote: "there are only a few reports of psoriasis and psoriatic arthritis after the bcg treatment. i think the risks are low for a problem but let me know if you have any flare ups. good luck." (I use a 6-ft home UVB unit which keeps my hand, arm and leg placques (only kind I have and fairly limited) under control. A good friend does m'traxate w/ 100% success but I have avoided putting another drug in my body.

Had my first BCG Tuesday am. No side effects (yet). Was only able to hold it in 1.5 hours. Will post any psoriasis related side effects.

Good luck with your doc & continued findings of nothing.

David

Male Dx T1G3 5/08 @ Age 59. TURBT 5/08; TURBT+40 mg MMC 6/08; BCG (6) 7/08-8/08; Cysto & TURBT 9/08; BCG Maint(3) 10/08, 3/09; 7/09; 11/09; 5/10; & 1/11. Clean cystos 2/09, 9/09, 3/10, & 10/10.

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10 years 10 months ago #19282 by Rosemary
David,

Thanks for talking this over with me. After my Dx Doctor left me (he and I got along great, with calls to my home and asking how I was doing, etc.)
I asked the attending nurse about my new Doctor, and she told me that if she had bladder cancer, this is the Doctor that she would want. With all the Docs in the Clinic, that kind of approbation about my new Doctor was very welcome.

One thing that I have to consider is that my clinic no longer administers Mitomycin C. Since my body will not tolerate BCG treatments, I have to consider new options in case of recurrance. That is when (and if) I will have to take a long hard look at some options (I may even have to go out of town.)

Once again, you're the best for talking this over with me.

Your Bud,

Rosemary
Age - 55
T1 G3 - Tumor free 2 yrs 3 months
Dx January 2006

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