RE: From Dr. Gores - standard for testing for CCA; URSO

[Guest guest]

OK here's the problem and I hope you guys can help me solve it.

We do not know if Bob has small duct PSC or what.

He has taken 500mg since 1999 what is the consenses of stopping it.

We do not have a local hep or gi.

Should I call the last gi that saw him at Mayo?

Dee wife of Bob

>

> I finally e-mailed Dr. Gores regarding how often to test for

Cholangiocarcinoma. I was originally diagnosed with small-duct PSC, which is

why he mentions it.

>

> Here is what he wrote:

>

> Hi Ms. Nilson

>

> if you have small duct PSC no screening is needed.

> The urso trial suggested toxicity from URSO and you should stop the

> medication. If you have large duct PSC we would recommend an mri yearly

> along with a CA 19-9. i do not recommend ercp with brushings for fish for

> screening but only for diagnosis if there is jaundice

>

> greg

>

> Marie

>

>

>

>

> _________________________________________________________________

> Want to do more with Windows Live? Learn “10 hidden secrets” from .

>

http://windowslive.com/connect/post/jamiethomson.spaces.live.com-Blog-cns!550F68\

1DAD532637!5295.entry?ocid=TXT_TAGLM_WL_domore_092008

>

Dee Vinovich, GRI

Queen of Staging

Traders Realty Corp.

721 W. Lake

Peoria, IL 61614

dvinovich@...

[Guest guest]

Dee,

I've been taking 1800mg per day of Urso since 2002 and it has been VERY

successful at keeping my LFTs under control. As much as I trust and

respect Dr. Gores, it will take a lot more than the results of his one

study to get me to stop taking it. Take that for what it's worth to

you.

As for the frequency of cancer testing, because I've had

some " questionable " spots on recent MRCPs, CA-19-9 and CEA are always

included in my routine labs (every month) and brushings are always

taken during ERCPs.

Best,

Bill Wise

PSC '00, Listed TX '04

[Guest guest]

I'd call Mayo, myself - but I agree with Barb. My hep is aware of the study, but they (the practice) are evaluating the study results for applicability. I'm reluctant to change at this point, especially since I am asymptomatic (which was not the case with the study participants, from what I know).

Arne

57 - UC 1977 - PSC 2000

Alive and well in Minnesota

-----Original Message-----

From: [mailto: ] On Behalf Of Deanna Vinovich

OK here's the problem and I hope you guys can help me solve it.

We do not know if Bob has small duct PSC or what.

He has taken 500mg since 1999 what is the consensus of stopping it.

We do not have a local hep or gi.

Should I call the last gi that saw him at Mayo?

Dee wife of Bob

[Guest guest]

I'd call Mayo, myself - but I agree with Barb. My hep is aware of the study, but they (the practice) are evaluating the study results for applicability. I'm reluctant to change at this point, especially since I am asymptomatic (which was not the case with the study participants, from what I know).

Arne

57 - UC 1977 - PSC 2000

Alive and well in Minnesota

-----Original Message-----

From: [mailto: ] On Behalf Of Deanna Vinovich

OK here's the problem and I hope you guys can help me solve it.

We do not know if Bob has small duct PSC or what.

He has taken 500mg since 1999 what is the consensus of stopping it.

We do not have a local hep or gi.

Should I call the last gi that saw him at Mayo?

Dee wife of Bob

[Guest guest]

I'll be following what my doctor says to do. So far I haven't heard back from him. I was surprised that Dr. Gores said I should stop the URSO, since I'm not on high dose URSO. I thought it was just the high dose urso that should be stopped.Marie

To: From: stonehollowmn@...Date: Thu, 9 Oct 2008 19:56:27 -0500Subject: RE: From Dr. Gores - standard for testing for CCA; URSO

I'd call Mayo, myself - but I agree with Barb. My hep is aware of the study, but they (the practice) are evaluating the study results for applicability. I'm reluctant to change at this point, especially since I am asymptomatic (which was not the case with the study participants, from what I know).

Arne

57 - UC 1977 - PSC 2000

Alive and well in Minnesota

-----Original Message-----

From: [mailto: ] On Behalf Of Deanna Vinovich

OK here's the problem and I hope you guys can help me solve it.

We do not know if Bob has small duct PSC or what.

He has taken 500mg since 1999 what is the consensus of stopping it.

We do not have a local hep or gi.

Should I call the last gi that saw him at Mayo?

Dee wife of Bob

See how Windows connects the people, information, and fun that are part of your life. See Now

[Guest guest]

I'll be following what my doctor says to do. So far I haven't heard back from him. I was surprised that Dr. Gores said I should stop the URSO, since I'm not on high dose URSO. I thought it was just the high dose urso that should be stopped.Marie

To: From: stonehollowmn@...Date: Thu, 9 Oct 2008 19:56:27 -0500Subject: RE: From Dr. Gores - standard for testing for CCA; URSO

I'd call Mayo, myself - but I agree with Barb. My hep is aware of the study, but they (the practice) are evaluating the study results for applicability. I'm reluctant to change at this point, especially since I am asymptomatic (which was not the case with the study participants, from what I know).

Arne

57 - UC 1977 - PSC 2000

Alive and well in Minnesota

-----Original Message-----

From: [mailto: ] On Behalf Of Deanna Vinovich

OK here's the problem and I hope you guys can help me solve it.

We do not know if Bob has small duct PSC or what.

He has taken 500mg since 1999 what is the consensus of stopping it.

We do not have a local hep or gi.

Should I call the last gi that saw him at Mayo?

Dee wife of Bob

See how Windows connects the people, information, and fun that are part of your life. See Now

[Guest guest]

Hi ,

Thank you for emailing doctor Gores, for us.

Until now, and i am a study participant, i thought, the toxicity was from the high dose, only. And that is what their notifications were all about. It is probably some recent results of the safety monitoring board, review. That is very dissappointing for me because my gi was planning to put me back, but on a lower dose, after the one year, study observation ends. As i mentioned before, my LFT's went up again, shortly after stopping Urso.

About the standard testing for CCA, doctor Gores is advicing an annual test for CA19-9, the same as doctor Lindor, of course. But his ERCP tests recommendation, were very interesting. I mean, i still want to have regular ERCP's done, so they can monitor and may be know what is going on inside their, inspite of my fearfullness of them.

Take care.

Hi Ms. Nilson

if you have small duct PSC no screening is needed. The urso trial suggested toxicity from URSO and you should stop the medication. If you have large duct PSC we would recommend an mri yearly along with a CA 19-9. i do not recommend ercp with brushings for fish for screening but only for diagnosis if there is jaundice

greg

Marie

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[Guest guest]

Hi ,

Thank you for emailing doctor Gores, for us.

Until now, and i am a study participant, i thought, the toxicity was from the high dose, only. And that is what their notifications were all about. It is probably some recent results of the safety monitoring board, review. That is very dissappointing for me because my gi was planning to put me back, but on a lower dose, after the one year, study observation ends. As i mentioned before, my LFT's went up again, shortly after stopping Urso.

About the standard testing for CCA, doctor Gores is advicing an annual test for CA19-9, the same as doctor Lindor, of course. But his ERCP tests recommendation, were very interesting. I mean, i still want to have regular ERCP's done, so they can monitor and may be know what is going on inside their, inspite of my fearfullness of them.

Take care.

Hi Ms. Nilson

if you have small duct PSC no screening is needed. The urso trial suggested toxicity from URSO and you should stop the medication. If you have large duct PSC we would recommend an mri yearly along with a CA 19-9. i do not recommend ercp with brushings for fish for screening but only for diagnosis if there is jaundice

greg

Marie

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[Guest guest]

Hi ,I would print the e-mail from Dr. Gores and show it to your doctor. Then I would follow your doctor's advice so that you are compliant with YOUR doctor. I think what Dr. Gore wrote is a surprise to most of us, especially regarding URSO.Marie

To: From: frd_sr_dado@...Date: Thu, 9 Oct 2008 22:24:39 -0700Subject: Re: From Dr. Gores - standard for testing for CCA; URSO

Hi ,

Thank you for emailing doctor Gores, for us.

Until now, and i am a study participant, i thought, the toxicity was from the high dose, only. And that is what their notifications were all about. It is probably some recent results of the safety monitoring board, review. That is very dissappointing for me because my gi was planning to put me back, but on a lower dose, after the one year, study observation ends. As i mentioned before, my LFT's went up again, shortly after stopping Urso.

About the standard testing for CCA, doctor Gores is advicing an annual test for CA19-9, the same as doctor Lindor, of course. But his ERCP tests recommendation, were very interesting. I mean, i still want to have regular ERCP's done, so they can monitor and may be know what is going on inside their, inspite of my fearfullness of them.

Take care.

Hi Ms. Nilson

if you have small duct PSC no screening is needed. The urso trial suggested toxicity from URSO and you should stop the medication. If you have large duct PSC we would recommend an mri yearly along with a CA 19-9. i do not recommend ercp with brushings for fish for screening but only for diagnosis if there is jaundice

greg

Marie

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[Guest guest]

Hi Marie,

I do like your suggestion. I am going to show Dr. Gores's e-mail to my doctor, now so he can decide as soon as the study ends. Actually i was thinking to completely withdraw from what is left of the study, so i can go back to Urso. But that is not permissible.

It would be interesting to find out more regarding the whole deal about Urso, because we are starting to learn some new warnings that was not mentioned by Mayo, at the time.

Thanks, again.

Hi Ms. Nilson

if you have small duct PSC no screening is needed. The urso trial suggested toxicity from URSO and you should stop the medication. If you have large duct PSC we would recommend an mri yearly along with a CA 19-9. i do not recommend ercp with brushings for fish for screening but only for diagnosis if there is jaundice

greg

Marie

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[Guest guest]

My doctor has now decided to follow Dr. Gores' advice and take me off URSO. Marie

To: From: frd_sr_dado@...Date: Fri, 10 Oct 2008 19:59:59 -0700Subject: RE: From Dr. Gores - standard for testing for CCA; URSO

Hi Marie,

I do like your suggestion. I am going to show Dr. Gores's e-mail to my doctor, now so he can decide as soon as the study ends. Actually i was thinking to completely withdraw from what is left of the study, so i can go back to Urso. But that is not permissible.

It would be interesting to find out more regarding the whole deal about Urso, because we are starting to learn some new warnings that was not mentioned by Mayo, at the time.

Thanks, again.

Hi Ms. Nilson

if you have small duct PSC no screening is needed. The urso trial suggested toxicity from URSO and you should stop the medication. If you have large duct PSC we would recommend an mri yearly along with a CA 19-9. i do not recommend ercp with brushings for fish for screening but only for diagnosis if there is jaundice

greg

Marie

Want to do more with Windows Live? Learn “10 hidden secrets” from . Learn Now

See how Windows connects the people, information, and fun that are part of your life. See Now

See how Windows connects the people, information, and fun that are part of your life. See Now