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treatment change

3 years 11 months ago #47784 by fighterm
I have two concurrent cancers and I cannot start my first TURB until I finish my chemo for lymphoma. We will beat them all, right?

66yo female, 1992-Non-Hodg. lymphoma(NHL) high grade, chemo, rads, 2007 NHL, low grade, rads, 2013 NHL low grade, stage 4, chemo till Jan 2015; 2014 TCC, first Turb 01/29/2015.

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3 years 11 months ago #47780 by sara.anne
I understand your concerns...I often wonder why I had two cancers, my husband had two and died of lung cancer. Coincidence? Living longer than a century ago? Environmental issues? But it does me no good to worry about what is past.

All we can do is try our best. And, as you say, your doctor seems to be up on what needs to be done.

I do wonder how many patients who are being hit by the BCG scarcity are engaging their congressmen and letting them know what the problems are.

Sara Anne

Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
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3 years 11 months ago #47779 by cgbowness
My diagnosis is carcinoma in situ so even though it's contained, the risk is there. With the aggressive chemo and radiation from my earlier years, I have a long list of health issues (including cardiomyopathy and restrictive lung disease)and have reached my life time doses for both. Do you think some people themselves can be high risk for re-occurrence? I think my worry comes mostly from "what if" and how to go from there. I do feel good though about the treatment regimen I am on now after talking to you. It seems some Drs. don't follow maintenance plan. Even mitomycin wasn't the original and BCG alone was the protocol, I am being watched carefully I guess. I just don't know how much of an advocate I need to be. There is a line between advocating and being pesty, which is when they don't take my concerns serious enough.

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3 years 11 months ago #47775 by sara.anne
This BCG thing is a real bummer. However, mitomycin C has been successful as an alternate, especially when patients have reactions to BCG. It is used just like BCG....instilled into the bladder....not given as systemic chemotherapy.

You are fortunate to have had the initial 6 weeks of BCG. This is all some patients get, although the maintenance regimen has been shown to increase effectiveness significantly. Mitomycin should be a good follow up.

As for "high risk" with non-invasive superficial bladder cancer, yes...certain types are more high risk. Some tumors are rated low-grade...for many of these BCG is not given unless they return multiple times. Some, however, are rated high grade and these patients usually go right to BCG or Mitomycin therapy. One of the most high grade superficial cancers is CIS (carcinoma in situ).

Bladder cancer is my second cancer, so I can empathize with your feelings. BUT you did receive the initial BCG treatments so you are on the right path!!

Sara Anne

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

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3 years 11 months ago #47771 by cgbowness
I was diagnosed in April and did my initial 6 week BCG after. Then the shortage began. On my 1st scheduled maintenance, I waited an additional 2 months to start. Now I am ready for my 2nd maintenance treatment and once again there is still no BCG. Because this is my third separate cancer, I am concerned that waiting will lead to re-occurrence. Are there such things as "high risk" patients in bladder cancer (non-invasive superficial)? The Dr agreed to treat me with mitomicyn, it seems chemo is more aggressive but I'd rather not sit around while this thing gets out of control.

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