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Re: Latest review on PSC

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This is the highest number I have seen so far. I usually see 5-15%.

-----Original Message-----From: [mailto: ]On Behalf Of Jeffsullivan@...Sent: Monday, October 30, 2006 3:57 PMTo: Subject: Re: Latest review on PSC

So, any opinions or best guess as to what percentage is closer to the mark? I try not to live my life in total fear of it, but naturally, I'm concerned.

Jeff in FL

PSC 1989

In a message dated 10/30/2006 8:42:35 A.M. Eastern Standard Time, rhodesdavidinsightbb writes:

Cholangiocarcinoma develops in 8-30% of patients.

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This is the highest number I have seen so far. I usually see 5-15%.

-----Original Message-----From: [mailto: ]On Behalf Of Jeffsullivan@...Sent: Monday, October 30, 2006 3:57 PMTo: Subject: Re: Latest review on PSC

So, any opinions or best guess as to what percentage is closer to the mark? I try not to live my life in total fear of it, but naturally, I'm concerned.

Jeff in FL

PSC 1989

In a message dated 10/30/2006 8:42:35 A.M. Eastern Standard Time, rhodesdavidinsightbb writes:

Cholangiocarcinoma develops in 8-30% of patients.

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This is the highest number I have seen so far. I usually see 5-15%.

-----Original Message-----From: [mailto: ]On Behalf Of Jeffsullivan@...Sent: Monday, October 30, 2006 3:57 PMTo: Subject: Re: Latest review on PSC

So, any opinions or best guess as to what percentage is closer to the mark? I try not to live my life in total fear of it, but naturally, I'm concerned.

Jeff in FL

PSC 1989

In a message dated 10/30/2006 8:42:35 A.M. Eastern Standard Time, rhodesdavidinsightbb writes:

Cholangiocarcinoma develops in 8-30% of patients.

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Looks like this range is based on taking an incidence range of 0.6 to

1.5% per year times a survival range of 12 to 20 years to come up with

an estimate of how frequently CCA will develop. I'm sure Dr. Chapman

is just echoing the uncertainty of the data he has available, but it

does create a quandry over how proactive we must be to avoid CCA by

focusing on an early transplant with a living donor.

Tim R

> In a message dated 10/30/2006 8:42:35 A.M. Eastern Standard Time,

rhodesdavid@... writes:

> Cholangiocarcinoma develops in 8-30% of patients.

>

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Looks like this range is based on taking an incidence range of 0.6 to

1.5% per year times a survival range of 12 to 20 years to come up with

an estimate of how frequently CCA will develop. I'm sure Dr. Chapman

is just echoing the uncertainty of the data he has available, but it

does create a quandry over how proactive we must be to avoid CCA by

focusing on an early transplant with a living donor.

Tim R

> In a message dated 10/30/2006 8:42:35 A.M. Eastern Standard Time,

rhodesdavid@... writes:

> Cholangiocarcinoma develops in 8-30% of patients.

>

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Looks like this range is based on taking an incidence range of 0.6 to

1.5% per year times a survival range of 12 to 20 years to come up with

an estimate of how frequently CCA will develop. I'm sure Dr. Chapman

is just echoing the uncertainty of the data he has available, but it

does create a quandry over how proactive we must be to avoid CCA by

focusing on an early transplant with a living donor.

Tim R

> In a message dated 10/30/2006 8:42:35 A.M. Eastern Standard Time,

rhodesdavid@... writes:

> Cholangiocarcinoma develops in 8-30% of patients.

>

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I was good up until the hypergammaglobulinemia part...and I got

confused...decreased T cells and an increased ratio of CD4 to CD8

cells? Is this the immune compromised part that I am always trying to

explain as Noah's specific chink in his armour? or his immune system's

vulnerability that made it so he could get PSC and IBD versus getting

MS, or other autoimmune diseases...?

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I was good up until the hypergammaglobulinemia part...and I got

confused...decreased T cells and an increased ratio of CD4 to CD8

cells? Is this the immune compromised part that I am always trying to

explain as Noah's specific chink in his armour? or his immune system's

vulnerability that made it so he could get PSC and IBD versus getting

MS, or other autoimmune diseases...?

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I was good up until the hypergammaglobulinemia part...and I got

confused...decreased T cells and an increased ratio of CD4 to CD8

cells? Is this the immune compromised part that I am always trying to

explain as Noah's specific chink in his armour? or his immune system's

vulnerability that made it so he could get PSC and IBD versus getting

MS, or other autoimmune diseases...?

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That is terrifying, but remember also the other article that talked

about how dramatically the risk goes down with long-term use of

Urso... tx,

nina

husband PSC 4/06

>

>

> So, any opinions or best guess as to what percentage is closer to

the mark?

> I try not to live my life in total fear of it, but naturally, I'm

concerned.

>

> Jeff in FL

> PSC 1989

>

>

> In a message dated 10/30/2006 8:42:35 A.M. Eastern Standard Time,

> rhodesdavid@... writes:

>

> Cholangiocarcinoma develops in 8-30% of patients.

>

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That is terrifying, but remember also the other article that talked

about how dramatically the risk goes down with long-term use of

Urso... tx,

nina

husband PSC 4/06

>

>

> So, any opinions or best guess as to what percentage is closer to

the mark?

> I try not to live my life in total fear of it, but naturally, I'm

concerned.

>

> Jeff in FL

> PSC 1989

>

>

> In a message dated 10/30/2006 8:42:35 A.M. Eastern Standard Time,

> rhodesdavid@... writes:

>

> Cholangiocarcinoma develops in 8-30% of patients.

>

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I wanna know why so much of 's immune system dislikes him. How many chinks are in his armour, and how can we weld 'em back up? I wish you guys were out here in the midwest instead of all the way on the east coast. It'd be nice if and Noah could meet and not feel so alone with their crap. :-) Amimariapamom wrote: I was good up until the hypergammaglobulinemia part...and I got

confused...decreased T cells and an increased ratio of CD4 to CD8 cells? Is this the immune compromised part that I am always trying to explain as Noah's specific chink in his armour? or his immune system's vulnerability that made it so he could get PSC and IBD versus getting MS, or other autoimmune diseases...? Ami mom to - 8 yrs - Double Lung Tx 2/26/2006, PSC - Pre-Liver Tx, Central DI, Steroid Induced Diabetes, HypoT, GERD, High BP, ADD, Anemia, Malabsorption, No Motility http://www.caringbridge.com/visit/seanfox mom to Emma - 12 yrs - Migraines, otherwise healthy stepmom to - 13 yrs - ADD, RAD ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Access over 1 million songs - Yahoo! Music Unlimited Try it today.

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I wanna know why so much of 's immune system dislikes him. How many chinks are in his armour, and how can we weld 'em back up? I wish you guys were out here in the midwest instead of all the way on the east coast. It'd be nice if and Noah could meet and not feel so alone with their crap. :-) Amimariapamom wrote: I was good up until the hypergammaglobulinemia part...and I got

confused...decreased T cells and an increased ratio of CD4 to CD8 cells? Is this the immune compromised part that I am always trying to explain as Noah's specific chink in his armour? or his immune system's vulnerability that made it so he could get PSC and IBD versus getting MS, or other autoimmune diseases...? Ami mom to - 8 yrs - Double Lung Tx 2/26/2006, PSC - Pre-Liver Tx, Central DI, Steroid Induced Diabetes, HypoT, GERD, High BP, ADD, Anemia, Malabsorption, No Motility http://www.caringbridge.com/visit/seanfox mom to Emma - 12 yrs - Migraines, otherwise healthy stepmom to - 13 yrs - ADD, RAD ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Access over 1 million songs - Yahoo! Music Unlimited Try it today.

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A few days ago I saw a documentary on television about people that have two types of DNA in their body. It apparently is very, very, very rare, but it made me wonder if this might be something that is going on in some of us.

-----Original Message-----From: [mailto: ]On Behalf Of Ami FoxSent: Monday, October 30, 2006 11:26 PMTo: Subject: Re: Re: Latest review on PSC

I wanna know why so much of 's immune system dislikes him. How many chinks are in his armour, and how can we weld 'em back up?

I wish you guys were out here in the midwest instead of all the way on the east coast. It'd be nice if and Noah could meet and not feel so alone with their crap. :-)

Amimariapamom <kickkat17momcomcast (DOT) net> wrote:

I was good up until the hypergammaglobulinemia part...and I got confused...decreased T cells and an increased ratio of CD4 to CD8 cells? Is this the immune compromised part that I am always trying to explain as Noah's specific chink in his armour? or his immune system's vulnerability that made it so he could get PSC and IBD versus getting MS, or other autoimmune diseases...?

Ami

mom to - 8 yrs - Double Lung Tx 2/26/2006, PSC - Pre-Liver Tx, Central DI, Steroid Induced Diabetes, HypoT, GERD, High BP, ADD, Anemia, Malabsorption, No Motility

http://www.caringbridge.com/visit/seanfox

mom to Emma - 12 yrs - Migraines, otherwise healthy

stepmom to - 13 yrs - ADD, RAD

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Access over 1 million songs - Yahoo! Music Unlimited Try it today.

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A few days ago I saw a documentary on television about people that have two types of DNA in their body. It apparently is very, very, very rare, but it made me wonder if this might be something that is going on in some of us.

-----Original Message-----From: [mailto: ]On Behalf Of Ami FoxSent: Monday, October 30, 2006 11:26 PMTo: Subject: Re: Re: Latest review on PSC

I wanna know why so much of 's immune system dislikes him. How many chinks are in his armour, and how can we weld 'em back up?

I wish you guys were out here in the midwest instead of all the way on the east coast. It'd be nice if and Noah could meet and not feel so alone with their crap. :-)

Amimariapamom <kickkat17momcomcast (DOT) net> wrote:

I was good up until the hypergammaglobulinemia part...and I got confused...decreased T cells and an increased ratio of CD4 to CD8 cells? Is this the immune compromised part that I am always trying to explain as Noah's specific chink in his armour? or his immune system's vulnerability that made it so he could get PSC and IBD versus getting MS, or other autoimmune diseases...?

Ami

mom to - 8 yrs - Double Lung Tx 2/26/2006, PSC - Pre-Liver Tx, Central DI, Steroid Induced Diabetes, HypoT, GERD, High BP, ADD, Anemia, Malabsorption, No Motility

http://www.caringbridge.com/visit/seanfox

mom to Emma - 12 yrs - Migraines, otherwise healthy

stepmom to - 13 yrs - ADD, RAD

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Access over 1 million songs - Yahoo! Music Unlimited Try it today.

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A few days ago I saw a documentary on television about people that have two types of DNA in their body. It apparently is very, very, very rare, but it made me wonder if this might be something that is going on in some of us.

-----Original Message-----From: [mailto: ]On Behalf Of Ami FoxSent: Monday, October 30, 2006 11:26 PMTo: Subject: Re: Re: Latest review on PSC

I wanna know why so much of 's immune system dislikes him. How many chinks are in his armour, and how can we weld 'em back up?

I wish you guys were out here in the midwest instead of all the way on the east coast. It'd be nice if and Noah could meet and not feel so alone with their crap. :-)

Amimariapamom <kickkat17momcomcast (DOT) net> wrote:

I was good up until the hypergammaglobulinemia part...and I got confused...decreased T cells and an increased ratio of CD4 to CD8 cells? Is this the immune compromised part that I am always trying to explain as Noah's specific chink in his armour? or his immune system's vulnerability that made it so he could get PSC and IBD versus getting MS, or other autoimmune diseases...?

Ami

mom to - 8 yrs - Double Lung Tx 2/26/2006, PSC - Pre-Liver Tx, Central DI, Steroid Induced Diabetes, HypoT, GERD, High BP, ADD, Anemia, Malabsorption, No Motility

http://www.caringbridge.com/visit/seanfox

mom to Emma - 12 yrs - Migraines, otherwise healthy

stepmom to - 13 yrs - ADD, RAD

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Access over 1 million songs - Yahoo! Music Unlimited Try it today.

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