Questions

14 years 11 months ago #25379 by alsimons
Replied by alsimons on topic Questions
Gee Pat;

Everytime I talk about you I say I have a Guardian Angel. One that doen't believe in flipping coins;)

Seriously Kieley everyone of the warriors around here are a wealth of information to us newbies.

Wishing your mother-in-law the best

Al

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14 years 11 months ago #25375 by ang0623
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Thank you so much Pat, there is hope after all I think! It's tough though, you want the answers now and want it over with now, do you know what I mean? Waiting and not know is awful and so I feel like I'm searching for more and more answers, solutions to this problem. I literally wake up in the middle of the night thinking about it. I'm dwelling on it more than anyone I think...well other than my mother and father in law.I wish they were better with the internet, this site is fabulous!

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14 years 11 months ago #25374 by Patricia
Replied by Patricia on topic Questions
OK..if she's getting what Karen got its MVAC...a 4 chemo regimen. It worked for Karen and she's more than 8 yrs out at this time from cystectomy and an Indiana Pouch. Tell her not to be afraid of cystectomy and reconstruction....it sounds terrifing to all of us....but honestly, in the hands of a great surgeon which Dr. Donat is she will get all the margins and leave no room for mistakes. They are just top notch there and have some of the best statistics around for bladder cancer.
I went to Dr. Herr there (who happens to be married to Dr. Donat) who did my second TURB and honestly no question in my mind he saved my life as he went in there and got all the margins the original surgeon missed. That gave me some time to research options for reconstruction. I was diagnosed at T2 and G2...but into the muscle. Ct scans showed no lymph node involvement but sometimes you never know until they get in there. When they know there is involvement they always advise chemo first. I was very lucky..i had 36 lymph nodes removed and all were clean...and i did not have to undergo Chemo.
Tell her to stay positive. She's in very good hands and we will help her through whatever comes next.
And gee...noone has ever called me an Angel. I'm extremely greatful to a lot of wonderful people who guided me through what seemed to be at the time a very solitary and somber time of my life. It would have been ever so easy to stick my head in the sand ( and i did try that a lot) but I kept going...reading good stuff and some really horrible stuff that had nothing to do with me ..but sorting it out was very difficult. I'm only giving back what was given to me. Pat

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14 years 11 months ago #25373 by Mel09
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You cna say that again! Pat watches over all of us here! We all love her :)

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14 years 11 months ago #25371 by ang0623
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I'm not sure what kind of chemo she is getting. I know it was the same thing Karen got at first, if that's any help. She's definitely stage four. I think she and my father in law get very overwhelmed taking in so much information at doctor appointments and don't always remember everything when they tell the rest of us. Unfortuately, my husband and I are in VA and my sister in law is in MD. My husband is traveling to NY with them and I'm going to ask that they e-mail or fax the doctors notes here so that I get 100% of the information. I have had everything sent to Sloan and we're all set. We had to subnit a letter to the insurance company from her current oncologist since the hospital is out of network but fortunately, they approved the request. I'm excited that I'm getting her going in the right direction but I'm afraid of her being let down again, I'm praying for a miracle. What stage were you diagnosed with? Do you still have your bladder? I read through a bit...it seems your an angel here to everyone!

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14 years 11 months ago #25370 by Patricia
Replied by Patricia on topic Questions
OK...now we're getting a bit of the entire story. Her pathology report should state exactly what grade and stage she is.....its in there somewhere. Obviously they know its in the lymph nodes and are giving her chemo...do you know what kind..Gemzar/Cisplatin..or a different combo?
I'm glad you are still keeping your appointment with Memorial Sloan. Be sure to bring all the pathology reports and CT/Pet scans, and specimens with you that they request unless thats been sent ahead. I personally had to carry all that with me when i went there.
Pat

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