cholangiocarcinoma -Katy

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Katy,

I am so glad to hear of your success with cc and your

transplant. I also was treated with a whipple surgery

for cc at the Mayo in 2003, where they found a tumor

in the common bile duct with advanced low grade

dysplasia that had spread to the pancreas so they cut

away part of the pancreas until they had clear

margins. (I would also like to add that I had had in

six months time over 12 ERCPS with brushings that all

came back negative for CC, numerous CT scans, MRI's

and PET scan which all came back negative. After

seeing numerous specialists here in VA only one doctor

was persistent enough that I go to the Mayo and see

Dr. Gores. I am very lucky that I did. I would

recommend that anyone with any question of cc to go

see Dr. Gores. I was wondering why you had the

transplant and did they find any signs of dysplasia in

your liver before the transplant? My last checkup

with Dr. Gores was Aug.04, and they attempted an ERCP

but couldn't get through, so my question to Dr. Gores

was how would they know if cc is in the liver. He

assured me that they could do a PTC and get into the

liver but at this time he didn't see any need for

that. I am assuming that when I have my checkup this

August that that would be one of the tests but then

again I know that they can't get a biopsy of the whole

liver. I also have checkups here in Va with blood

work and CT scans but they would not perform a

transplant on me since the CC so I also will have to

go to the Mayo if a transplant is needed. I worry

about the recurrence of CC which I know has a 60%

chance of coming back and most likely it would come

back in the liver, so I wonder what signs to look for.

I am sorry if you have already posted about all this

but I can't keep up with all the posts anymore and I

mainly look for anything about CC which doesn't come

up a whole lot. I don't even worry about PSC anymore,

my only symptoms is fatigue and my last blood workup

was normal except for slight anemia. I would

appreciate any advice you have.

Liz Ward

Fredericksburg VA

PSC 02, CC 03

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Liz,

While here at Mayo (been here for a month now) I was told by Dr. Gores that there is a transplant surgeon at Mayo ville that is a little more adventurous when it comes to transplanting what some doctors may feel are unsuitable patients. You may fall into this category. The next time your here you might question him a little.

I hope all continues to go well for you.

From: liz ward Sent: Tuesday, April 05, 2005 6:49 AMTo: Subject: cholangiocarcinoma -Katy

Katy,I am so glad to hear of your success with cc and yourtransplant. I also was treated with a whipple surgeryfor cc at the Mayo in 2003, where they found a tumorin the common bile duct with advanced low gradedysplasia that had spread to the pancreas so they cutaway part of the pancreas until they had clearmargins. (I would also like to add that I had had insix months time over 12 ERCPS with brushings that allcame back negative for CC, numerous CT scans, MRI'sand PET scan which all came back negative. Afterseeing numerous specialists here in VA only one doctorwas persistent enough that I go to the Mayo and seeDr. Gores. I am very lucky that I did. I wouldrecommend that anyone with any question of cc to gosee Dr. Gores. I was wondering why you had thetransplant and did they find any signs of dysplasia inyour liver before the transplant? My last checkupwith Dr. Gores was Aug.04, and they attempted an ERCPbut couldn't get through, so my question to Dr. Goreswas how would they know if cc is in the liver. Heassured me that they could do a PTC and get into theliver but at this time he didn't see any need forthat. I am assuming that when I have my checkup thisAugust that that would be one of the tests but thenagain I know that they can't get a biopsy of the wholeliver. I also have checkups here in Va with bloodwork and CT scans but they would not perform atransplant on me since the CC so I also will have togo to the Mayo if a transplant is needed. I worryabout the recurrence of CC which I know has a 60%chance of coming back and most likely it would comeback in the liver, so I wonder what signs to look for.I am sorry if you have already posted about all thisbut I can't keep up with all the posts anymore and Imainly look for anything about CC which doesn't comeup a whole lot. I don't even worry about PSC anymore,my only symptoms is fatigue and my last blood workupwas normal except for slight anemia. I wouldappreciate any advice you have.Liz WardFredericksburg VA PSC 02, CC 03 __________________________________ Yahoo! Messenger Show us what our next emoticon should look like. Join the fun. http://www.advision.webevents.yahoo.com/emoticontest

[Guest guest]

Hi, Liz. A fellow whipple survivor - we're a small and (un?)lucky group, huh?

If it's

any consolation, my transplant was an absolute breeze compared to the whipple -

ten hours less surgery and three weeks less in the hospital!)

Before the transplant but after the whipple, my doctors here in Boston monitored

my

ca-19 tumor marker blood levels, which were slightly elevated but not

conclusively

so, did PETS and CTs which showed suspicious " hotspots " , and tried numerous

times to do ERCPs and PTCs to check my liver for dysplasia, but were unable to

get in.

Then I was evaluated at the Univ of Pittsburgh for transplant where they also

failed

to get in via PTC, told me it was very likely that I had advanced

cholangiocarcinoma

and my only (slim) chance for survival was to have a 4 or 5 organ transplant

(liver,

pancreas, intestines, stomach, who knows what else?). Needless to say I left

Pittsburgh terrified and gunning for a second opinion.

That's when my Boston doctors sent me to Mayo, knowing that they have a ccx

protocol of chemo, radiation, surgery, then transplant. Thankfully there they

were

able to do an ERCP and saw no tumor but some dysplasia, and partially because of

the fear that the dysplasia might be widespread or that there could in fact be a

tumor

somewhere in the liver, and partially because of my progressing PSC, they listed

me

for a liver. (and only a liver, thank goodness!) Then as it turned out, a

living donor

transplant was the fastest way for me to get transplanted, my mother was

evaluated

and found to have (in my opinion, anyway) the world's best liver, and the rest

is

medical history.

So that's my story. I'm not sure if it answered your questions really, but I'd

be glad

to give it another go if I've forgotten something. I so agree with you -

anyone with

any question of ccx should get themselves to Dr Gores immediately.

Good luck to you.

Best wishes,

Katy