New treatment for me

16 years 5 months ago #9206 by wendy
Replied by wendy on topic New treatment for me
Hi Elsie,

I'm sorry to hear about the botched surgery and the recurrence. Where is the recur?

Pat's referenced article was great, it sounds like a very good option for the elderly who can't use cisplatin. Did you already have a cisplatin containing protocol?
I don't understand what clinical trial you were on as you don't mention treatments used till now aside from surgery.

Is this new combo of Xeloda and radiation a trial, too?

I understand your frustration with a trial protocol as we had a similar experience with my sister-because of the protocol which we felt so strongly about following, she continued with drugs that weren't helping. We learned that the trial was stopped and the results never tabulated, which contributed more to our pain after she died.

Wishing you well,
Wendy

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16 years 5 months ago #9193 by Gene Beane
Replied by Gene Beane on topic New treatment for me
Elsie,
You are in Michigan, I can recommend the Cleveland Clinic, we are not that far away. You are getting treated unfairly, and deserve the best health care possible.
The Dr. we had was Dr. Stephen Campbell, Glickman Uroligy institite, Cleveland Clinic. He did my husbands r/C. 1-440-444-2200,,, Ginger Beane

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16 years 5 months ago #9183 by Patricia
Replied by Patricia on topic New treatment for me
Elsie i found this from Shands Cancer Hospital in Fla...
www.ufscc.ufl.edu/Patient/cancernews.aspx?section=cancernews&id=34737

Pat

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16 years 5 months ago #9180 by elsie2
New treatment for me was created by elsie2
I have begun new treatment at a different hospital since my cancer has now spread The new hospital I have come to said all the cancer was not removed in the initial surgery which was botched by a faulty ileal conduit...(Had 2 holes in it and I needed 2 revisions which has left me with a severely recessed stoma and a painful and expanded abdomen.This took over 8 months for them to admit the problem and repair it...Those same doctors insisted I get no further cancer treatment .But Now,
A recent biopsy came back positive and now they wanted to do more treatment..so I left since I lost confidence with them.

Unfortunately, I was in a clinical trial...and they were not going to change the "protocol" no matter what happened to me. What did I know about clinical trials? I went to them because I was told that was the best hospital in Michigan for cancer
I am now undergoing radiation with Xeloda pills....I hope this helps..Although, I am afraid it may be too late . Maybe if the surgery had been successful and I had preventive treatment....I would not be in this condition now.
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