Re: Possible carcinoma and transplant?

November 26, 2008

Hi Holly,

I see that your first and only other post was just over a year ago. You only had two responses to that post. I'm sorry I did read that post back then and welcome you so I do it now. Welcome. sorry for your diagnosis but glad you found us. I would go through with the meeting with the doctors but be encouraged that FISH can back negative, I would think the fish test is less likely to be wrong , but if it does turnout to be carcinoma, be encouraged that others he have beaten it, and you can too. In your first post you were complaining about RUQ pain and Arne recommend hydration (drink lots of water). Is that better now? You have our prayers and support.

Ian (52) PSC 89

I was diagnosed with PSC in 2006. I have had 2 MRCPs, a liver biopsy, and 2 ERCPs since then. I have ulcerative colitis as well and was diagnosed in 2004 but probably have had it much longer.After my last ERCP in early Nov, 2008 it was recommended that I see a

transplant specialist (University of Wisconsin-Madison). I was told my cytology results came back suspicious and could be carcinoma but my FISH came back negative. The doctors will be meeting together to discuss my case to see if they should go thru protocol and recommend

me for a transplant. If carcinoma is indeed the case their protocol 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 -- Ian Cribb P.Eng.

November 26, 2008

Hi Holly,

I see that your first and only other post was just over a year ago. You only had two responses to that post. I'm sorry I did read that post back then and welcome you so I do it now. Welcome. sorry for your diagnosis but glad you found us. I would go through with the meeting with the doctors but be encouraged that FISH can back negative, I would think the fish test is less likely to be wrong , but if it does turnout to be carcinoma, be encouraged that others he have beaten it, and you can too. In your first post you were complaining about RUQ pain and Arne recommend hydration (drink lots of water). Is that better now? You have our prayers and support.

Ian (52) PSC 89

I was diagnosed with PSC in 2006. I have had 2 MRCPs, a liver biopsy, and 2 ERCPs since then. I have ulcerative colitis as well and was diagnosed in 2004 but probably have had it much longer.After my last ERCP in early Nov, 2008 it was recommended that I see a

transplant specialist (University of Wisconsin-Madison). I was told my cytology results came back suspicious and could be carcinoma but my FISH came back negative. The doctors will be meeting together to discuss my case to see if they should go thru protocol and recommend

me for a transplant. If carcinoma is indeed the case their protocol 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 -- Ian Cribb P.Eng.

November 26, 2008

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

>

November 26, 2008