RE: PSC and Cholangiocarcinoma

[Guest guest]

Hi ,

Thanks for the great update! It sounds as though you're on course to beat

this thing, and I want you to know that I'm rooting for you. This is a very

tough cancer to beat. I understand the Mayo Clinic trial is pretty much the

gold standard at this time, so you're very lucky that the Univ. of Utah is

following it. The last I checked or heard, UCLA is NOT following it - in

fact if you get cholangiocarcinoma, you are no longer a candidate for a

transplant at UCLA. But hopefully that will soon change.

I suspect that there are quite a few of us at this site who are very

interested in what you are going through, and would like to hear about it in

as much detail as you're willing to provide. I think you're blazing the

trail for the rest of us. In fact I think you are the one with the clear CT

scan and the position ERCP brushings. I told my hepatologist about you, and

am trying to get the ERCP test done. He said I would instead get the EUS

done (endoscopic ultrasound). It's a new test, coming soon to Kaiser Sunset.

He feels the EUS has less risk than the ERCP, and is just as good as the

ERCP in detecting cancer.

Take care, and keep us posted. I wish you the very best. Fight hard!

-Marie

_________________________________________________________________

http://im.live.com/messenger/im/home/?source=hmtextlinkjuly07

[Guest guest]

You may be interested in my wife's point of view.

http://bbfranson.blogspot.com

In it you will find a thyroid tumor scare that turned out to be

benign. There are blessings along the road.

[Guest guest]

:

One day at a time, and..... " Whatever it Takes " remember the PSC motto. Good

luck to you and yours and thank you for the update. It really helps the rest of

us to know the new studies and the treatments. You are in good hands and the

Lord has sent you angels to help all of you.

dee

..

> Our world has been shaken up and I have discovered the immense

> goodness of friends, relatives and neighbors. There are angels among

> us and they don't even know it.

>

[Guest guest]

Dear --- one day at a time it is!! The support you're receiving

from family, friends, and doctors is crucial. Holding tight is

essential ( *smile*).

I will make a very long story short. My husband, Brad, who has PSC

was

diagnosed with cholangiocarcinoma last year. He was fortunate to be

accepted into Mayo's transplant program last September.

Unfortunately,

he was eliminated shortly thereafter because it was found that the

cancer had spread to surrounding lymph nodes.

Since November of 2006, Brad has gone through chemo and radiation at

our local oncology center. Radiation is finished, and he remains on

chemo through August. The good news is that CT scans reveal no

tumors

(not that they aren't there). His oncologist is optimistic, as are

we. We've actually planned mini-vacations in Sept/Oct/Nov.

Please keep us all posted on your progress, . You have many

friends here!

Diane

[Guest guest]

,

Thanks for the info on the Blog by your wife. It sounds like the 2 of you

are very well informed about this cancer, and that you're getting excellent

treatment at the Univ. of Utah, as it is following the Mayo Clinic studies.

It sounds as though you have a rough road ahead, but that you'll come out of

this okay. And your wife seems to know just how lucky you are. I know it may

not seem like you're lucky, considering what you have to go through, but the

alternative would not have been good.

-Marie

>

>You may be interested in my wife's point of view.

>

>http://bbfranson.blogspot.com

>

>In it you will find a thyroid tumor scare that turned out to be

>benign. There are blessings along the road.

>

_________________________________________________________________

Local listings, incredible imagery, and driving directions - all in one

place! http://maps.live.com/?wip=69 & FORM=MGAC01

[Guest guest]

--

Thank you so much for your post. You're in my prayers, and please

keep the group posted on your progress.

The Mayo treatment protocol for cholangiocarcinoma is the best, and

I'm glad your doctors are on top of it. I am being monitored by Mayo

for possible cholangiocarcinoma myself. I do have some abnormal

tissue growth in one of the bile ducts, but Dr. Gores concluded in

April that it wasn't cancerous. Still, I'll be going back to

Rochester every six months for follow-ups.

The good news is that your treatment protocol has shown a great deal

of success, and I appreciate you sharing your experience with the group.

Thanks again.

Tom

PSC 1999

>

> Thank you all for sharing your experiences and challenges. It helps to

> know that there is support for those fighting PSC.

>

> I posted shortly after I was diagnosed with cholanciocarsinoma (bile

> duct cancer). I had no idea what that would mean for me and my family.

> Our world has been shaken up and I have discovered the immense

> goodness of friends, relatives and neighbors. There are angels among

> us and they don't even know it.

>

> I am being treated at the University of Utah/Huntsman Cancer Institute

> in Salt Lake City. The care has been amazing. I have 5 different

> doctors and each of them have patiently answered my questions. The

> treatment that I have chosen is part of a clinical study based on a

> similar study at the Mayo Clinic. The Mayo results increased the 5

> year survival rate from 2o percent to 82 percent.

>

> The treatment involves treating the cancer with Chemo and Radiation.

> Followed up with liver transplant.

>

> I have had a barrage of tests and preparation getting ready to start

> the cancer treatment. I have been approved and listed for a liver

> transplant.

>

> I have had PSC for over 13 years. The current treatment of Urso has

> helped maintain my liver function. What this means is that my meld

> score is very low because my liver function is near normal.

>

> As I understand it the longer one lives with PSC the higher the risk

> for cholanciocarsioma. The cancer is rare and treated mostly by

> removing the bile ducts with cancer. It is a viable option for someone

> without PSC. With PSC reoccurrence is likely because of the damage to

> the bile ducts.

>

> Here is the catch. I have a low Meld score, but If I wait for the

> cancer to progress enough to impair my liver function then it will be

> too far along to qualify for for a liver transplant.

>

> The clinical study allows for an elevated Meld score for patients with

> colangiocarcinoma.

>

> The prospects are good.

>

> My family an I are taking it a day at a time.

>