Re: Cholangiocarcinoma advice

[Guest guest]

>

> Hi everyone,

> Who would be the best Dr. at the Mayo Clinic to contact in regards to

> cholangiocacinoma?

> Cathy ( 21 yrs.)

I also was thinking about taking to Mayo - just for a second

opinion... PLUS, I have been becoming more and more concerned about

the symptoms most of you have to endure with PSC. I'm having

difficulty understanding why there is not better symptom

acknowledgment and management. ('s GI, who I really respect, like

and appreciate, continues to declare that his abdominal/upper

GI/esophageal pain is " functional " - his symptoms are reflective of

what many others write about and they are not just by chance, and are

real - despite not being listed very well in the textbooks). I just

can't believe we can't treat these symptoms more effectively to

enhance the everyday quality of life.

So, after my tirade.... any specific physician recommendations for Mayo?

Thanks.

Joanne

(, Ca., mom of , 16, UC/PSC 2-06; JRA 1998)

[Guest guest]

Hi Cathy and Joanne;

The best person to contact at Mayo Clinic, Rochester, MN, with respect

to cholangiocarcinoma is Dr. J. Gores:

http://mayoresearch.mayo.edu/mayo/research/staff/gores_gj.cfm

Best regards,

Dave R.

(father of (21); PSC 07/03; UC 08/03)

[Guest guest]

Dittoes on Dr. Gores. I'm scheduled with him from April 23 through May 3 for a cholangiocarcinoma workup. I've vetted him, and it looks like he's the best in the business.Tom C , EA Consulting Group, Inc.2005 Loudoun County Service Business of the Year19440 Golf Vista Plaza Ste 240Leesburg, VA 20176 cell faxThis written advice is not intended or written to be used, and it cannot be used by a taxpayer, for the purpose of avoiding penalties that may be imposed on the taxpayer.

[Guest guest]

> The best person to contact at Mayo Clinic, Rochester, MN, with respect

> to cholangiocarcinoma is Dr. J. Gores:

Dave -

Thanks and sorry to bother you again... but, for a general PSC

consult would Dr Gores still be the best choice?

Thanks.

Joanne

(, Ca., mom of , UC/PSC 2-06; JRA 1998)

[Guest guest]

Hi Joanne;

For a general consult you might ask to see Dr. Lindor?

O.T. -- I look forward to seeing you in Denver. Ricky suggested that I

contact you to ask you if I could get a ride to the CME on Friday

morning of next week? That would be wonderful if I could ride with you!

Best regards,

Dave

(father of (21); PSC 07/03; UC 08/03)

> Thanks and sorry to bother you again... but, for a general PSC

> consult would Dr Gores still be the best choice?

[Guest guest]

>

> O.T. -- I look forward to seeing you in Denver. Ricky suggested that I

> contact you to ask you if I could get a ride to the CME on Friday

> morning of next week? That would be wonderful if I could ride with you!

Dave -

Thanks for the Mayo recommendation.

Absolutely you can ride with me to the CME. I'll goggle a map in

advance. My husband will be doing a bit of business while in Denver,

but the early hour of the class will not interfere with his schedule!

We are scheduled to arrive Thursday evening at 8:20.

Joanne

[Guest guest]

I have to agree as that was the Dr that my husbands Dr here in Philly spoke to about my husbands case. Unfortunately Mark went too quickly for us to ever get past a phone call for a consultation. No matter how much you respect your dr and his opinion do not let him brush aside your symptoms and how you feel. That was one of the things my husband kept saying near the end was that perhaps if his GI dr who he had been with for 19 years would have listened to him more and done a little bit more testing because of Marks persistent low grade fever and over all malaise perhaps my husband would be sitting here on the sofa with me now. Don't stop asking questions, don't stop looking for your own answers. Whenever my husband was given a new medication I would barely skim over the listing of usual side effects and head right to the listing of rare side effects because invariably those were the ones that

would show up in my husband as he became less able to tolerate the normal medications. Sorry to go off again but I obviously have a lot of passion for how this disease is effecting so many and so many drs just seem to throw their arms up in the air because they don't know what to do about it to really help their patients. Hettinger

Expecting? Get great news right away with email Auto-Check.Try the Yahoo! Mail Beta.

[Guest guest]

-----Original

Message-----

Sorry to go off again but I obviously have a lot of passion for

how this disease is effecting so many and so many drs just seem to throw their

arms up in the air because they don't know what to do about it to really help

their patients.

,

Please stop apologizing. You have no idea how powerful and

insightful your posts are. We are

learning so much from you…… we just wish you didn’t come by

all this knowledge and experience the way you did. Who knows how many other people you will

save by telling us what to do and what not to do. Thank you for sharing so much with

us, it has to be so painful for you, but it is really appreciated by everyone

here.

Barb in Texas - Together in the Fight, Whatever it Takes!

Son Ken (32) UC 91 - PSC 99 Listed 7/21 @ Baylor Dallas

[Guest guest]

DEAR HEART NO YOUR NOT GOING OFF TO ANY OF US...WE WHO HAVE PSC AND OUR LOVED ONE..KNOW MORE ABOUT THIS DISEASE AND THE WEIRD EFFECTS IT HAS ON US. AND GOD BLESS ARE MATES THAT STAY WITH US AND PUT UP WITH US MY HUSBAND OF 22 YEARS COULDNT SO HE IS NOW MY EX.....BUT I DO HAVE FRIENDS... I REALLY HATE TO GO TO THE ER ROOM CAUSE MOST DR'S DONT HAVE A CLUE WHAT PSC IS....MY LIVER DR UP HERE SAYS (US WITH PSC KNOW MORE THAN MOST DRS. ON PSC..).THAT IS THANKS TO THE PSC GROUP THAT WORKS TOGETHER. SO NANCY YOUR INPUT IS SO IMPORTANT TO ALL OF US JEANNE Hettinger wrote: I have to agree as that was the Dr that my husbands Dr here in Philly spoke to about my husbands case. Unfortunately Mark went too quickly for us to ever get past a phone call for a consultation. No matter how much you respect your dr and his opinion do not let him brush aside your symptoms and how you feel. That was one of the things my husband kept saying near the end was that perhaps if his GI dr who he had been with for 19 years would have listened to him more and done a little bit more testing because of Marks persistent low grade fever and over all malaise perhaps my husband would be sitting here on the sofa with me now. Don't stop asking questions, don't stop looking for your own answers.

Whenever my husband was given a new medication I would barely skim over the listing of usual side effects and head right to the listing of rare side effects because invariably those were the ones that would show up in my husband as he became less able to tolerate the normal medications. Sorry to go off again but I obviously have a lot of passion for how this disease is effecting so many and so many drs just seem to throw their arms up in the air because they don't know what to do about it to really help their patients. Hettinger Expecting? Get great news right away with email Auto-Check.Try the Yahoo! Mail Beta.