Re: Looking for cancer in a strictured CBD - Whipple?

[Guest guest]

Gene, , Marie, , and ALL,

GENE: Thank you for sharing your story with us all. It has given me

and I'm sure others hope.

MARIE and ELIZABETH: Thank you for sharing.

SCOTT and ALL: Thank you for sharing with us all. And thank you for

the contact you gave me, Dr. Schwartz at University of Utah. I called

him, spoke with his assistant, left a message, he called me back within

an hour. I spoke with him about my status. Essentially no diagnosis of

CCA but having an ugly dominant sctricture in the CBD. And all attempts

at getting through the CBD have failed. Yet bile seems to be flowing

.... a mystery. He spoke with me for about 10-15 minutes and gave me a

bit more confidence in my doctors. Obviously you are following the MAYO

protocol with your condition. My doctors are recommending and have

scheduled a PTC and a Roux En Y hepaticojejunostomy. The stricture I

have starts about 1cm in from the ampula and runs for about 6cm. EUS

with biopsy did not show a mass nor did the biopsies come back abnormal.

The CA19-9 is 25. But I'm told if they open me up and find cancer in

the stricture near the ampula, they will have to do a Whipple procedure

on me and my survival chances are low. : ( This is such an odd

disease, I feel great, no symptoms and here I am talking about my

possible death. This is a scary time at my house, my wife and kids are

OK for now but I can't imagine how hard it would be for them to lose

their dad, husband.

My wife and I keep asking ourselves if we are going down the right path

with this. Should we try yet another route to get through the CBD,

should we contact someone at the MAYO clinic for more attempts at

getting through the CBD. Would we end up at the same place ... needing

a Roux?

Has anyone in this group had a Whipple procedure?

I'm at the point where the Roux En Y (Hepatico) doesn't scare me so much

any more but I get a feeling of dread that a finding of cancer in this

stricture means I die.

Opinions from everyone are welcome. If anyone wants to talk to me my

cell phone number is:

- 45

PSC, Crohns 2000 (1 bout of jaundice, no other symptoms)

> >

> > If they find cancer, I'm told it will eliminate me from ever being

on

> > the LTx list. Is that everyone elses experience?

> >

> > Are there any PSCers in this group living with cancer?

> >

>

>

> Up until two weeks ago, I was. I've been a member of the group here

> for seven years, but don't post very much anymore. My PSC was dormant

> for most of the ten years since I was diagnosed in 1997. Then,

> earlier this year, my fatigue started to get worse and I began to lose

> weight. I had an ERCP done in mid-June, and the biopsies from both

> internal bile ducts came back positive for cancer. An EUS that was

> done two weeks later revealed a 1 centimeter mass near where the CBD

> exits the liver. Needless to say, I was devastated, since nothing had

> ever come up on any of my previous blood tests to indicate the

> presence of CCA.

>

> In mid-July, I began a five-week chemo and radiation treatment program

> at University Hospital in Denver in hopes of shrinking the tumor and

> allowing a transplant to take place. All subsequent tests had showed

> that it had not yet spread beyond the liver. My MELD score was only

> 13, so it was extremely unlikely that I was going to get a cadaveric

> liver. However, I had several living donor candidates step forward on

> my behalf, and my 34 year old nephew was scheduled to fly out from New

> York City on Aug. 13th to be tested.

>

> On Aug. 9th, my MELD got bumped up to 21. Four days later, Aug. 13th,

> I got the call at 1:30 in the morning to come down to the hospital by

> 6:00 a.m. since they had a liver available for me. I live four hours

> away in the mountains, and jumped in the car and drove like mad to get

> there in time. At ten o'clock that morning, I got my new liver.

> Everything went very smoothly. I was on the table for four hours,

> took one unit of blood, and was out of the hospital in eight days.

>

> To say that the last two weeks have been a whirlwind for me would be a

> extreme understatement. Two months ago, I was told that I had CCA and

> might have six months to live. Today, all indications are that the

> cancer was contained within the liver and did not spread. They may

> have me complete the chemo and radiation program as a precautionary

> measure, since I had only done three of the five weeks before tx. I

> will also get a PETscan in three months.

>

> So the answer to your question, , is that yes, people with CCA

> can still get a transplant, for which I am extremely grateful!

>

> Gene

>

[Guest guest]

,

I had a " modified Whipple's procedure " done in 1989, but I wasn't aware of it being that risky, not that I would have refused (I was quite sick at the time). Although I had back out on a liver test earlier when the preforming doctor flippantly stated there was a four percent chance of death (I wasn't told earlier and hadn't said good bye to my wife that day, I later went through with the test). I will email you a copy of the operation report. I am praying for you and your family.

Ian (51) PSC 89

Gene, , Marie, , and ALL,GENE: Thank you for sharing your story with us all. It has given meand I'm sure others hope.MARIE and ELIZABETH: Thank you for sharing.SCOTT and ALL: Thank you for sharing with us all. And thank you for

the contact you gave me, Dr. Schwartz at University of Utah. I calledhim, spoke with his assistant, left a message, he called me back withinan hour. I spoke with him about my status. Essentially no diagnosis of

CCA but having an ugly dominant sctricture in the CBD. And all attemptsat getting through the CBD have failed. Yet bile seems to be flowing... a mystery. He spoke with me for about 10-15 minutes and gave me a

bit more confidence in my doctors. Obviously you are following the MAYOprotocol with your condition. My doctors are recommending and havescheduled a PTC and a Roux En Y hepaticojejunostomy. The stricture Ihave starts about 1cm in from the ampula and runs for about 6cm. EUS

with biopsy did not show a mass nor did the biopsies come back abnormal.The CA19-9 is 25. But I'm told if they open me up and find cancer inthe stricture near the ampula, they will have to do a Whipple procedure

on me and my survival chances are low. : ( This is such an odddisease, I feel great, no symptoms and here I am talking about mypossible death. This is a scary time at my house, my wife and kids areOK for now but I can't imagine how hard it would be for them to lose

their dad, husband.My wife and I keep asking ourselves if we are going down the right pathwith this. Should we try yet another route to get through the CBD,should we contact someone at the MAYO clinic for more attempts at

getting through the CBD. Would we end up at the same place ... needinga Roux?Has anyone in this group had a Whipple procedure?I'm at the point where the Roux En Y (Hepatico) doesn't scare me so much

any more but I get a feeling of dread that a finding of cancer in thisstricture means I die.Opinions from everyone are welcome. If anyone wants to talk to me mycell phone number is:

- 45PSC, Crohns 2000 (1 bout of jaundice, no other symptoms)> >> > If they find cancer, I'm told it will eliminate me from ever beingon> > the LTx list. Is that everyone elses experience?> >

> > Are there any PSCers in this group living with cancer?> >>>> Up until two weeks ago, I was. I've been a member of the group here> for seven years, but don't post very much anymore. My PSC was dormant

> for most of the ten years since I was diagnosed in 1997. Then,> earlier this year, my fatigue started to get worse and I began to lose> weight. I had an ERCP done in mid-June, and the biopsies from both

> internal bile ducts came back positive for cancer. An EUS that was> done two weeks later revealed a 1 centimeter mass near where the CBD> exits the liver. Needless to say, I was devastated, since nothing had

> ever come up on any of my previous blood tests to indicate the> presence of CCA.>> In mid-July, I began a five-week chemo and radiation treatment program> at University Hospital in Denver in hopes of shrinking the tumor and

> allowing a transplant to take place. All subsequent tests had showed> that it had not yet spread beyond the liver. My MELD score was only> 13, so it was extremely unlikely that I was going to get a cadaveric

> liver. However, I had several living donor candidates step forward on> my behalf, and my 34 year old nephew was scheduled to fly out from New> York City on Aug. 13th to be tested.>> On Aug. 9th, my MELD got bumped up to 21. Four days later, Aug. 13th,

> I got the call at 1:30 in the morning to come down to the hospital by> 6:00 a.m. since they had a liver available for me. I live four hours> away in the mountains, and jumped in the car and drove like mad to get

> there in time. At ten o'clock that morning, I got my new liver.> Everything went very smoothly. I was on the table for four hours,> took one unit of blood, and was out of the hospital in eight days.

>> To say that the last two weeks have been a whirlwind for me would be a> extreme understatement. Two months ago, I was told that I had CCA and> might have six months to live. Today, all indications are that the

> cancer was contained within the liver and did not spread. They may> have me complete the chemo and radiation program as a precautionary> measure, since I had only done three of the five weeks before tx. I

> will also get a PETscan in three months.>> So the answer to your question, , is that yes, people with CCA> can still get a transplant, for which I am extremely grateful!>> Gene

> -- Ian Cribb P.Eng.

[Guest guest]

Ian,

Thank you, Sir. Errr ... I should say Brother.

I'm currently scheduled for the Roux En Y (HJ) and/or Whipple (depending

upon findings during the operation) for September 10. I go from having

" The peace that passes understanding " to " Holy Cow ... I'm gonna die " as

I think about what's coming. I've gotten to the point where the

operation itself only makes me a bit nervous. It's the potential

finding of cancer, if I let my mind dwell on that, which sends me into

doubt about the future. As a Christian, I know that NONE of this is in

my control and whether there's cancer or no cancer, whether my day to

die is today or fifty years from now, NONE of this is in my control.

When that day comes, I know where I'm going. However, I sure do want to

stick around to see my kids grow up, and long enough to be a grandpa to

their kids, and still chase my wife Vicki around.

Has the modified Whipple procedure you had adversely affected your life?

Was your CBD removed?

I'd appreciate any prayers and petitions you and anyone in this group

would have for there to be " NO CANCER " in my body.

Thank you ... May God bless y'all

- 45

PSC, Crohns 2000

> >

> >

> > Gene, , Marie, , and ALL,

> >

> Ian Cribb P.Eng.

>

>

[Guest guest]

,

I just read through the other thread you started on " Looking for cancer in a strictured CBD " . Pretty scary stuff this " CCA " , but also some very hopeful stories. When I had my operation back in 1989 my bile ducts looked pretty bad and they thought they were cancerous. I was not aware of how big a bullet I had dodged when the tests on the removed ducts came back negative.

My " modified Whipple procedure " has not significantly changed my life. I am able to eat anything (although I like choose to say I'm allergic to turnips). They removed my CBD and replaced it with a section of bowel. They checked for a IBD but found none. I am now (and will be till death) on URSO, blood thinners and synthroid (thyroid replacement), but have no side effects from any of them.

I will be praying for you, you have nothing to fear God his on (and by) your side. When I was sick in 1989 God gave me a verse, Ezekiel 21:21. They were sticking needles (arrows) into my liver trying to figure out which way to go.

God best to you and your family.

Ian

Ian,Thank you, Sir. Errr ... I should say Brother.I'm currently scheduled for the Roux En Y (HJ) and/or Whipple (dependingupon findings during the operation) for September 10. I go from having

" The peace that passes understanding " to " Holy Cow ... I'm gonna die " asI think about what's coming. I've gotten to the point where theoperation itself only makes me a bit nervous. It's the potential

finding of cancer, if I let my mind dwell on that, which sends me intodoubt about the future. As a Christian, I know that NONE of this is inmy control and whether there's cancer or no cancer, whether my day to

die is today or fifty years from now, NONE of this is in my control. When that day comes, I know where I'm going. However, I sure do want tostick around to see my kids grow up, and long enough to be a grandpa to

their kids, and still chase my wife Vicki around.Has the modified Whipple procedure you had adversely affected your life?Was your CBD removed?I'd appreciate any prayers and petitions you and anyone in this group

would have for there to be " NO CANCER " in my body.Thank you ... May God bless y'all - 45PSC, Crohns 2000> >> >> > Gene, , Marie, , and ALL,> >

> Ian Cribb P.Eng.> > -- Ian Cribb P.Eng.