non-invasive CIS bladder cancer, stage 0-1

9 years 5 months ago #47506 by ronm
I was posting from my cell & made a few mistakes. It is CIS and the Everolimus treatment is a pill once a day for a year. My vitals will be monitored once a week for the first seven weeks while taking the Gemcitabine injected into the bladder(twice a week) & the Everolimus taken orally daily. The monitoring will be once a month after that. If at any time it is shown not to be working they will stop the program or I can withdraw if I can't tolerate the meds. I will see another oncologist tomorrow at Cornell for a third opinion on treatment. The unknown element of the study is very frightening and it is hard to get any info on it pertaining to it's success or failures.

Also The combination of Gemcitbine & Everolimus for bladder cancer is new and has the effects are unknown. Also it's hard to get a handle on how this combination of therapy will make me feel from all the side effects.

I agree with your statement "I would think that another opinion would be in order. I am sure the docs at SK are excellent, but I would always wonder how many patients they need to enroll in their trial" :laugh:

They did do a TURBT to confirm 3 weeks ago.

My other options are removing the bladder now or if the therapy fails.

At the crossroads,
Ron

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9 years 5 months ago #47500 by sara.anne
Replied by sara.anne on topic non-invasive CIS bladder cancer, stage 0-1
This is a tough one. I assume you meant CIS? It IS high grade and, if it came back I would be concerned. I had it, had BCG, and it has not returned. BUT I am constantly turning over in my mind what my choice would be should it come back.

I would think that another opinion would be in order. I am sure the docs at SK are excellent, but I would always wonder how many patients they need to enroll in their trial :laugh:

You said that cytology indicated that the cancer was back. Have you had another TURB or was this urine cytology? Urine cytology is very useful, but also is subject to a lot of false positives and false negatives, which is why is it used with other diagnostic methods.

CIS is not something to fool around with, so you should collect all the information you can.

Sara Anneg

Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
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9 years 5 months ago - 9 years 5 months ago #47498 by ronm
I was diagnosed with high grade bladder cancer in December 2013. It is non-invasive and just on the surface of the bladder. One area is flat and one is slightly raised. I was treated with BCG for six weeks once a week. I did not do a follow up BCG because of calcium deposits that were forming on the damaged tissue so they waited for it to clear up. After three months everything was clean and it looked better but I still had red areas and calcification and i was told to come back in 4 months. I went back after the 4th month and cytology showed the cancer returned.



I went for a second opinion at Sloan and after a turbt the above was confirmed. They recommend removing the bladder or going on a study which involves Gemcitabine for 7 weeks and Everolimus once a week day for a year. They told me they are seeing good results in the study but its only a handful of people and only a couple have completed this therapy with good results.

My original oncologist told me its worth another shot with the BCG and maybe intron combined. At 61 years old and in good health otherwise he did not think a study was for me. I am going for a 3rd opinion this week since this is all pretty scary.

Consused in NY.

Anyone here have success with BCG after it failed the first time? Anyone have any experience with the drugs in this study?

TIA,
Ron

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