RE: Re: Possible carcinoma and transplant?

[Guest guest]

Please do keep us in the loop on what is going on. This is a scary prospect for all of us.Marie

To: From: gertzh49@...Date: Thu, 27 Nov 2008 02:14:01 +0000Subject: Re: Possible carcinoma and transplant?

Genevieve,

That is exactly the protocol they were talking about with me. It is

comforting to hear that someone knows what I am talking about. Thank

you so much for responding. I hope everything goes well with you. I

will keep you in my thoughts. If you don't mind me asking where are

you recieving your treatments?

My FISH was sent to Mayo after UW-Madison looked at it, it was

negative so yes I realize that is a good thing. It still bothers me

though. I saw all the pictures of my bile ducts etc... It's

overwhelming! Good luck with everything, keep in touch! If no one

else has responded to your wondering about others recieving this

treatment I'm sure we would all be interested in knowing about your

progress! Thanks again, you're my light today!

>

> Hi Holly,

>

> I am going through this right now--in fact, my first chemo

treatment

> was this afternoon.

>

> First 0ff, you should be encouraged right now that your FISH test

> came back negative for aneuploides (gentic changes that indicated

> abnormal cells are morphing into cancer cells). Was your FISH sent

> off to Mayo? [i think most of them are sent out, not examined in-

> house.] If it wasn't, you should ask to have it looked at by the

> folks at Mayo for a second opinion. When a FISH test comes back

> positive, roughly 60-95% of the time these abnormal cells morph

into

> cholangiocarcinoma within a year to two years, so a positive FISH

is

> serious business.

>

> Here's the GOOD part (and I really do mean GOOD, because CCA can be

a

> deadly cancer if it's not caught early enough): your docs are going

> to be on TOP of this now. If it comes back that your FISH ever is

> positive for aneuploides I would hope they would move fast--and I

> mean get you into the protocol within a week or two--or I would get

> my butt to Mayo or somewhere else. When it's caught at such an

early

> stage it is very treatable; you will have a hellish year and a half

> with chemo, radiation, and the transplant, but then you are done

with

> the cancer, done with the PSC, etc. and can get on with your life--

> that is what is getting me through this, is thinking of it that way.

>

> The second to last week of October my most recent FISH test came

back

> positive for aneuploides. I went through all the routine testing

to

> enter the liver transplant program and CCA protocol the next week,

> and was accepted. They gave us three weeks to get my act together

> because my husband and I wanted to go through an IVF cycle to

freeze

> embryos for future use (fertility issues are a major concern with

> chemo and radiation), and then I had a laparoscopic surgery to

stage

> the cancer--stage 0 in my case, not even an appreciable tumor yet,

> just evidence of cancer cells.

>

> Today was my first chemo treatment. I have two three weeks cycles

of

> a drug called Gemzar, then a two week break, then 5 weeks of

> continuous chemo (24/7 5-FU treatment) and radiation (5 days/week)

> then another break of a couple of months. Then I have an

laparotomy

> to visually examine my abdomen and be certain that no cancer has

> spread, at which time I will be listed for transplant. Then I take

> an oral chemo drug, Xeloda, until the day I get my transplant.

>

> Success rates for treating cholangiocarcinoma this way have shown

to

> be much better than with transplant alone. For some reason, when

CCA

> is treated with just srugery, it tends to come back. This kind of

> treatment--ESPECIALLY when caught early--can be curative.

>

> So that's a very long-winded way to say yeah, I've heard of

> this!! If you have ANY questions along the way, please don't

> hesitate to ask me. When I asked if anyone else on the board had

> experience with this protocol nobody spoke up--so I'm not sure if

> there is anyone else here that has been in our specific shoes. But

> if you have to travel this road too, I can walk you through it.

>

> Best,

> Genevieve

> UC 1983, J-Pouch 1999, PSC 12/07, CCA 10/08, first chemo treatment

> was today, and I feel fine!! Hoping tomorrow is the same.

>

>

>

> > includes radiation and chemotherapy followed by a transplant.

> >

> > Does this sound familiar to anyone? I was quite honestly blind

> sided

> > and didn't expect this at all. I knew a transplant was in my

future

> > but they told me in another 15 years or so. I haven't experienced

> > jaundice, increased bilirubin, or LFT's out of control.

> >

> > I need some help if anyone thinks they could share anything that

> > would be greatly appreciated!

> >

> > Thanks,

> > Holly

> >

>

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