Re: New to list and many questions

[Guest guest]

Welcome to the group. I'm sorry your husband's diagnosis

and worsening condition brought you here, but glad you found us. If

cholangiocarcinoma is diagnosed, Dr. Gores at Mayo Clinic in Mn. is

the top expert in treating it. I would get him involved if

cholangiocarcinoma is a possibility.

s Hopkins has an excellent site describing gastrointestinal

diseases and their treatments at:

http://hopkins-gi.nts.jhu.edu/pages/latin/templates/index.cfm?

pg=disease1 & organ=3 & disease=27 & lang_id=1

(you may need to paste the 2 parts of this URL together to get the

cholangiocarcinoma pages to come up, or use the " DIGESTIVE DISEASE

LIBRARY " menu (on the left side of the page) to browse to " BILIARY

TRACT " and on to cholangiocarcinoma or primary sclerosing

cholangitis). The surgical options under " THERAPY " have good

illustrations of reconstructive bile duct surgery - bilateral

hepatojejunostomy with Roux-en-Y anastomosis, sometimes just

referred to as a roux-en-Y. The rest of the site will definitely get

you up to speed to discuss options with your medical team.

Best regards,

Tim R, ltx 1998, recurrent PSC 2002, relisted with MELD of 20.

> ...

> They feel the ducts are closing from the outside and worry he may

> have cholangiocarcinoma. They had been telling us stents until

> liver failure then a transplant. Now they are talking about a

major

> surgery to reconstruct the ducts. This will depend upon any

cancer

> and invasion if any.

>

> I have no idea if his doctor at Hopkins is well thought of, He

sees

> Dr Zhiping Li. His most recent ercp was with the head of the

> department Dr Thuluvath. This was when the stent was removed and

> the plan for MRI's began.

>

> I have no idea if this is how things go. Should we push to go to

> Mayo Clinic.

>

> Any idea what reconstructive bile duct surgery they are talking

> about?

[Guest guest]

It is time for you both to take charge and fight this as aggressively

and cognitively as anything in your professional lives! I concur that

Hopkins has gastro strengths; however, Dr. Gores at Mayo has

exceptional exposure and experiences with the spectacular nuances of

PSC and moreover, cholangiocarcinoma.

My husband had a similar diagnosis route as yours (revel in this

irony...high liver panel was discovered during a physical for a

corporate wellness program; he has always been asymptomatic). Stent

placement followed three weeks later. At that time we requested his

URSO dosage be bumped to 30 mg/kg/d. Ten weeks later, his stent was

removed and the stricture in his common distile bile duct showed

marked reduction in inflammation. He continues on high-dose URSO, had

(2) brushings and an MRCP to monitor for cholangioncarcinoma, as well

as a colonoscopy to ensure UC is not lurking. Since the July 05 stent

removal, all of his numbers are in the absolute normal range.

I missed what meds your husband is taking. I firmly believe URSO is

saving Marc's liver and life.

Big point here: do not stop until you find the ultimate in insightful

care. We started with a medical university of moderate acclaim. They

were OK, but clearly not as aggressive and progressive as we wanted.

In our journey, we have amassed our team of a strong local

gastroenterologist, an exceptional oncologist (who leads our

cholangiocarcinoma vigilance), and just two weeks ago, we finally

found our point hepatologist (Dr. Raiford, Vanderbilt). We

decided we needed an exceptional point person who is adroitly familiar

with PSC to coordinate our fight. We decided Dr.Raiford and Dr. Gores

were our only candidates. I did not want someone on the learning

curve; we could not afford that lost time. ly, we visited Dr.

Raiford first and he radically suited our every need.

Overwhelming? Now there is an understatement. You both are in fields

that are not easy to get into. Use that tenacity in fighting PSC and

cholangiocarcinoma, if present.

Give yourselves the gift of exceptional, adroit treatment. This is the

time to get to Mayo. You are an incredible asset to your husband; you

speak the language! I had to figure out where the biliary tree was

when my husband was diagnosed

You guys can do this!

Best wishes,

Marci

Wife to Marc, PSC 05

[Guest guest]

It is time for you both to take charge and fight this as aggressively

and cognitively as anything in your professional lives! I concur that

Hopkins has gastro strengths; however, Dr. Gores at Mayo has

exceptional exposure and experiences with the spectacular nuances of

PSC and moreover, cholangiocarcinoma.

My husband had a similar diagnosis route as yours (revel in this

irony...high liver panel was discovered during a physical for a

corporate wellness program; he has always been asymptomatic). Stent

placement followed three weeks later. At that time we requested his

URSO dosage be bumped to 30 mg/kg/d. Ten weeks later, his stent was

removed and the stricture in his common distile bile duct showed

marked reduction in inflammation. He continues on high-dose URSO, had

(2) brushings and an MRCP to monitor for cholangioncarcinoma, as well

as a colonoscopy to ensure UC is not lurking. Since the July 05 stent

removal, all of his numbers are in the absolute normal range.

I missed what meds your husband is taking. I firmly believe URSO is

saving Marc's liver and life.

Big point here: do not stop until you find the ultimate in insightful

care. We started with a medical university of moderate acclaim. They

were OK, but clearly not as aggressive and progressive as we wanted.

In our journey, we have amassed our team of a strong local

gastroenterologist, an exceptional oncologist (who leads our

cholangiocarcinoma vigilance), and just two weeks ago, we finally

found our point hepatologist (Dr. Raiford, Vanderbilt). We

decided we needed an exceptional point person who is adroitly familiar

with PSC to coordinate our fight. We decided Dr.Raiford and Dr. Gores

were our only candidates. I did not want someone on the learning

curve; we could not afford that lost time. ly, we visited Dr.

Raiford first and he radically suited our every need.

Overwhelming? Now there is an understatement. You both are in fields

that are not easy to get into. Use that tenacity in fighting PSC and

cholangiocarcinoma, if present.

Give yourselves the gift of exceptional, adroit treatment. This is the

time to get to Mayo. You are an incredible asset to your husband; you

speak the language! I had to figure out where the biliary tree was

when my husband was diagnosed

You guys can do this!

Best wishes,

Marci

Wife to Marc, PSC 05

[Guest guest]

>

> It is time for you both to take charge and fight this as aggressively

> and cognitively as anything in your professional lives! I concur that

Thanks so much for your words of encouragement. Our Dr at Hopkins is

going to arrange for the referral to Mayo. I will make sure it is

with Dr Gores.

They are still talking about surgery at Hopkins to look for

Cholangiocarcinoma, but they agree if it is there it needs to be

handled at Mayo. I just really don't want to waste time, but so far

all the imaging just looks " worrisom " and not in any way are they

willing to say this looks like carcinoma.

Who needs two surgeries. Perhaps we just really push for the Mayo

appointment. Your advice is greatly appreciated.

Pam, husband Philip PSC 05

[Guest guest]

>

> It is time for you both to take charge and fight this as aggressively

> and cognitively as anything in your professional lives! I concur that

Thanks so much for your words of encouragement. Our Dr at Hopkins is

going to arrange for the referral to Mayo. I will make sure it is

with Dr Gores.

They are still talking about surgery at Hopkins to look for

Cholangiocarcinoma, but they agree if it is there it needs to be

handled at Mayo. I just really don't want to waste time, but so far

all the imaging just looks " worrisom " and not in any way are they

willing to say this looks like carcinoma.

Who needs two surgeries. Perhaps we just really push for the Mayo

appointment. Your advice is greatly appreciated.

Pam, husband Philip PSC 05

[Guest guest]

>

> It is time for you both to take charge and fight this as aggressively

> and cognitively as anything in your professional lives! I concur that

Thanks so much for your words of encouragement. Our Dr at Hopkins is

going to arrange for the referral to Mayo. I will make sure it is

with Dr Gores.

They are still talking about surgery at Hopkins to look for

Cholangiocarcinoma, but they agree if it is there it needs to be

handled at Mayo. I just really don't want to waste time, but so far

all the imaging just looks " worrisom " and not in any way are they

willing to say this looks like carcinoma.

Who needs two surgeries. Perhaps we just really push for the Mayo

appointment. Your advice is greatly appreciated.

Pam, husband Philip PSC 05

[Guest guest]

In the cholangiocarcinoma papers I've read, the authors caution

against thin needle biopsies for suspected CCA because of the

possibility of " seeding " the tumor into the abdominal cavity. If some

cells drop off the needle, they can metastasize, creating a problem

that might not have existed before. I don't know if open surgery

carries the same risks, but I would agree that you shouldn't mess

around- if Hopkins is talking about CCA and doing surgery, go straight

to Mayo if that is at all an option for you. If it is CCA, you'll end

up there anyway, so why lose time?

Martha (MA)

UC, 1979, PSC 1992

> Who needs two surgeries. Perhaps we just really push for the Mayo

> appointment. Your advice is greatly appreciated.

>

> Pam, husband Philip PSC 05

>

[Guest guest]

In the cholangiocarcinoma papers I've read, the authors caution

against thin needle biopsies for suspected CCA because of the

possibility of " seeding " the tumor into the abdominal cavity. If some

cells drop off the needle, they can metastasize, creating a problem

that might not have existed before. I don't know if open surgery

carries the same risks, but I would agree that you shouldn't mess

around- if Hopkins is talking about CCA and doing surgery, go straight

to Mayo if that is at all an option for you. If it is CCA, you'll end

up there anyway, so why lose time?

Martha (MA)

UC, 1979, PSC 1992

> Who needs two surgeries. Perhaps we just really push for the Mayo

> appointment. Your advice is greatly appreciated.

>

> Pam, husband Philip PSC 05

>

[Guest guest]

In the cholangiocarcinoma papers I've read, the authors caution

against thin needle biopsies for suspected CCA because of the

possibility of " seeding " the tumor into the abdominal cavity. If some

cells drop off the needle, they can metastasize, creating a problem

that might not have existed before. I don't know if open surgery

carries the same risks, but I would agree that you shouldn't mess

around- if Hopkins is talking about CCA and doing surgery, go straight

to Mayo if that is at all an option for you. If it is CCA, you'll end

up there anyway, so why lose time?

Martha (MA)

UC, 1979, PSC 1992

> Who needs two surgeries. Perhaps we just really push for the Mayo

> appointment. Your advice is greatly appreciated.

>

> Pam, husband Philip PSC 05

>