Re:Possible carcinoma and transplant?

[Guest guest]

Holly,

Thought I was reading my own story when I read yours.......yes this is the protocol......I went to Mayo and met with Dr. Lindor and he told me TRISOMY 7 does NOT mean cancer...........that is what my cytology was......Drs. at Madison do 6 weeks of chemo and radiation and Dr. Lindor mentioned that Mayo would do 3 weeks of chemo and radiation.......I picked up on this but at the time I did not ask why the difference but will ask him if this ever gets to that point again.......I wrote you a message on your private email about my story.......I'm anxious to here if yours is Trisomy 7 too......

[Guest guest]

>

> Holly:

I had been seeing Dr. Mussat at UW - Madison and I was told the same

thing you were........my tests all came back neg. but my cytology

showed Trisomy 7 and they wanted to do Chemo and Radiation on me

also.......I was dumbfounded the day they said this to me.....well, I

went to Madison in Sept. all set to start and went to the Radiologist

first and he said " I can't do radiation on you as you don't have

cancer " then I went to Dr. Schelmann (oncologist at UW-Madison) and

he said " I can't give you chemo as you do not have cancer " I was so

happy I could not believe how lucky I was.....on to the transplant

center and Dr. Mussat saw me and stuck his head in to say Hi and I

told home what was going on and he said he did not want to play with

this type of cancer as he has seen it in many different forms and it

is not something to play with he was going to talk to those two Dr.

and they would get back to me.....then in came the surgeon and he

went along with Dr. Mussat.....so I came home and my tx coordinator

called a few days later and said they were all on the same page now

and wanted to get going on this.....well, my primary Dr. had heard

this and he was calling me here in our home town and he said you have

to go to Mayo before you do this.....I called Madison on a Tue. and

they got me in with Dr. Lindor at Mayo for the following Monday.....I

went to Mayo and Dr. Lindor told me that Trisomy 7 does not mean

cancer.....they have just realized this and it is so new that they

have not even written an article on this yet....Dr. Lindor told me to

go home relax and come back in 3 months for another ERCP and

brushing......and in 6 weeks he wanted liver enzymes run.....I had

them run last week and they came back all high....so now I have to go

in again on Friday or next week and have blood drawn again to see if

there is a change....he said if they come down that would be good but

if they don't come down I have to get back to Mayo for another

ERCP.....I am a nervous wreck since all this started.....Don't know

who to believe or what to think.....I really like Dr. Mussat and I

like Dr. Lindor allot too and I know Mayo sets the protocol on Liver

transplants so guess I will listen to Dr. Lindor but wonder all the

time what is going on.....This is really scary right......please let

me know what Dr. you are seeing and if yours was the cytology was

trisomy 7......

Good Luck

CJ

>

[Guest guest]

Hi CJ;

The only paper I've seen on trisomy 7 and FISH in detecting malignant biliary strictures is this paper by Dr. Gores of Mayo Clinic:

Moreno Luna LE, Kipp B, Halling KC, Sebo TJ, Kremers WK, LR, Barr Fritcher EG, Levy MJ, Gores GJ 2006 Advanced cytologic techniques for the detection of malignant pancreatobiliary strictures. Gastroenterology 131: 1064-1072.

Full text available at:

http://www.pubmedcentral.nih.gov/picrender.fcgi?artid=1769444 & blobtype=pdf

You might consider sharing this with your hepatologist if he has not already seen it?

Best regards,

Dave

(father of (23); PSC 07/03; UC 08/03)

>> > > > Holly:> > I had been seeing Dr. Mussat at UW - Madison and I was told the same > thing you were........my tests all came back neg. but my cytology > showed Trisomy 7 and they wanted to do Chemo and Radiation on me > also.......

[Guest guest]

Hi CJ;

The only paper I've seen on trisomy 7 and FISH in detecting malignant biliary strictures is this paper by Dr. Gores of Mayo Clinic:

Moreno Luna LE, Kipp B, Halling KC, Sebo TJ, Kremers WK, LR, Barr Fritcher EG, Levy MJ, Gores GJ 2006 Advanced cytologic techniques for the detection of malignant pancreatobiliary strictures. Gastroenterology 131: 1064-1072.

Full text available at:

http://www.pubmedcentral.nih.gov/picrender.fcgi?artid=1769444 & blobtype=pdf

You might consider sharing this with your hepatologist if he has not already seen it?

Best regards,

Dave

(father of (23); PSC 07/03; UC 08/03)

>> > > > Holly:> > I had been seeing Dr. Mussat at UW - Madison and I was told the same > thing you were........my tests all came back neg. but my cytology > showed Trisomy 7 and they wanted to do Chemo and Radiation on me > also.......

[Guest guest]

CJ,

I am seeing Dr. Mezrich at Madison. I am still waiting to find out what

they want to do with me, I will know on Friday. I really like him and

respect him for how he has dealt with me thus far. Why did they send

you to Mayo too? They also want me to have my colon removed before the

transplant if/when it happens. urgh! I hope everything goes well!

In my thoughts,

Holly

[Guest guest]

CJ,

I am seeing Dr. Mezrich at Madison. I am still waiting to find out what

they want to do with me, I will know on Friday. I really like him and

respect him for how he has dealt with me thus far. Why did they send

you to Mayo too? They also want me to have my colon removed before the

transplant if/when it happens. urgh! I hope everything goes well!

In my thoughts,

Holly

[Guest guest]

CJ,

I am seeing Dr. Mezrich at Madison. I am still waiting to find out what

they want to do with me, I will know on Friday. I really like him and

respect him for how he has dealt with me thus far. Why did they send

you to Mayo too? They also want me to have my colon removed before the

transplant if/when it happens. urgh! I hope everything goes well!

In my thoughts,

Holly