Re: Dear God...this is getting old...

[Guest guest]

Hi Don,

The just found enlarged nodes in me and I am having my CA 19-9 amd CEA drawn

tomorrow. Do you know how big you nodes were? I am curious to see how mine

compare. Also do you know were your were? Mine are at the Prtal vein and one

is 3 cm x 1.7 cm and another is 2.7 cm X 1.9 cm. They said there were others

that were enlarged but not to the degree of these two.

Thanks

Dawn

>

>

> From: D B

> Subject: Re: Fellow PSCer please read

> To: " wim.ruyten "

> Date: Thursday, March 19, 2009, 4:52 PM

>

>

>

>

>

>

>

> Win

>  

> Well....after a long 30 days (and being told I might have cholangiocarcinoma

aka " cc " cancer in my bile duct) along with my PSC.... Dr P. told me

today...... " I don't HAVE CANCER there " , yes there is still chance and they

are looking into the possibility of HCC (Hepatic Cellular Carcinoma) in the

liver?...but heck i'm going to lose the liver anyway, right.

>  

> They haven't done a PET scan because my insurance said they " have to find prof

first there is cancer some where...kinda of a chicken an the egg thing if you

ask me...!

> But still, no CC in the bile duct and to me... this IS good news!

>  

> Yes...I may be closer to a transplant, (back to see the liver surgeons Friday)

but from my ascites fluid analysis he said No CC! They took three liters of

fluid from me (It reminded me of the pregnant women you hear about, that didn't

know she was with child!) soooo... obviously my liver is cirrhosising.

>  

> As you said Win ... " man Don when you get something you go full on " ! or

something like that?

>  

> Soooo..That my latest news from Scripps Hospital and Dr. P!

>  

> Peace and Prayers to us all!

> Don B. PSC/UC 11-08

>  

> PS I really wish I was riding with you! You'll just have to know we are there

in (his) spirit! Ride like the win(d) my friend!

>

>

>

>

>

> From: wim.ruyten

> To: D B

> Sent: Thursday, March 19, 2009 7:18:01 AM

> Subject: Re: Fellow PSCer please read

>

> Hey Don:

>

> I haven't heard from you/about you in a while. What's the word on the CA19-9

marker test?

>

> As for me, I'm working on getting ready for the ride to Chicago. Just hurt my

back yesterday with a stupid move in our garage. Hopefully that won't last

long...

>

> Best,

> Wim

>

> P.S.: Note my new e-mail address, Also, I have a lot of stuff on my website

now:

>

> http://www.euclideanoptics.com/Chicago/index.htm

>

> See especially all the links at the bottom of the page.

>

[Guest guest]

Hi Don,

The just found enlarged nodes in me and I am having my CA 19-9 amd CEA drawn

tomorrow. Do you know how big you nodes were? I am curious to see how mine

compare. Also do you know were your were? Mine are at the Prtal vein and one

is 3 cm x 1.7 cm and another is 2.7 cm X 1.9 cm. They said there were others

that were enlarged but not to the degree of these two.

Thanks

Dawn

>

>

> From: D B

> Subject: Re: Fellow PSCer please read

> To: " wim.ruyten "

> Date: Thursday, March 19, 2009, 4:52 PM

>

>

>

>

>

>

>

> Win

>  

> Well....after a long 30 days (and being told I might have cholangiocarcinoma

aka " cc " cancer in my bile duct) along with my PSC.... Dr P. told me

today...... " I don't HAVE CANCER there " , yes there is still chance and they

are looking into the possibility of HCC (Hepatic Cellular Carcinoma) in the

liver?...but heck i'm going to lose the liver anyway, right.

>  

> They haven't done a PET scan because my insurance said they " have to find prof

first there is cancer some where...kinda of a chicken an the egg thing if you

ask me...!

> But still, no CC in the bile duct and to me... this IS good news!

>  

> Yes...I may be closer to a transplant, (back to see the liver surgeons Friday)

but from my ascites fluid analysis he said No CC! They took three liters of

fluid from me (It reminded me of the pregnant women you hear about, that didn't

know she was with child!) soooo... obviously my liver is cirrhosising.

>  

> As you said Win ... " man Don when you get something you go full on " ! or

something like that?

>  

> Soooo..That my latest news from Scripps Hospital and Dr. P!

>  

> Peace and Prayers to us all!

> Don B. PSC/UC 11-08

>  

> PS I really wish I was riding with you! You'll just have to know we are there

in (his) spirit! Ride like the win(d) my friend!

>

>

>

>

>

> From: wim.ruyten

> To: D B

> Sent: Thursday, March 19, 2009 7:18:01 AM

> Subject: Re: Fellow PSCer please read

>

> Hey Don:

>

> I haven't heard from you/about you in a while. What's the word on the CA19-9

marker test?

>

> As for me, I'm working on getting ready for the ride to Chicago. Just hurt my

back yesterday with a stupid move in our garage. Hopefully that won't last

long...

>

> Best,

> Wim

>

> P.S.: Note my new e-mail address, Also, I have a lot of stuff on my website

now:

>

> http://www.euclideanoptics.com/Chicago/index.htm

>

> See especially all the links at the bottom of the page.

>

[Guest guest]

>

>

> From: D B

> Subject: Re: Fellow PSCer please read

> To: " wim.ruyten "

> Date: Thursday, March 19, 2009, 4:52 PM

>

>

>

>

>

>

>

> Win

>  

> Well....after a long 30 days (and being told I might have cholangiocarcinoma

aka " cc " cancer in my bile duct) along with my PSC.... Dr P. told me

today...... " I don't HAVE CANCER there " , yes there is still chance and they

are looking into the possibility of HCC (Hepatic Cellular Carcinoma) in the

liver?...but heck i'm going to lose the liver anyway, right.

>  

> They haven't done a PET scan because my insurance said they " have to find prof

first there is cancer some where...kinda of a chicken an the egg thing if you

ask me...!

> But still, no CC in the bile duct and to me... this IS good news!

>  

> Yes...I may be closer to a transplant, (back to see the liver surgeons Friday)

but from my ascites fluid analysis he said No CC! They took three liters of

fluid from me (It reminded me of the pregnant women you hear about, that didn't

know she was with child!) soooo... obviously my liver is cirrhosising.

>  

> As you said Win ... " man Don when you get something you go full on " ! or

something like that?

>  

> Soooo..That my latest news from Scripps Hospital and Dr. P!

>  

> Peace and Prayers to us all!

> Don B. PSC/UC 11-08

>  

> PS I really wish I was riding with you! You'll just have to know we are there

in (his) spirit! Ride like the win(d) my friend!

>

>

>

>

>

> From: wim.ruyten

> To: D B

> Sent: Thursday, March 19, 2009 7:18:01 AM

> Subject: Re: Fellow PSCer please read

>

> Hey Don:

>

> I haven't heard from you/about you in a while. What's the word on the CA19-9

marker test?

>

> As for me, I'm working on getting ready for the ride to Chicago. Just hurt my

back yesterday with a stupid move in our garage. Hopefully that won't last

long...

>

> Best,

> Wim

>

> P.S.: Note my new e-mail address, Also, I have a lot of stuff on my website

now:

>

> http://www.euclideanoptics.com/Chicago/index.htm

>

> See especially all the links at the bottom of the page.

>

[Guest guest]

Dear Dawn and Don;

Sorry to hear about your problems of enlarged lymph nodes. But it's worth noting

again that enlarged lymph nodes around the liver are not uncommon in PSC. The

following study says that they found enlarged lymph nodes (lymphadenopathy)

around the liver in 66% of PSC patients, and that the presence of

lymphadenopathy is not associated with the development of cholangiocarcinoma.

They also conclude that the presence of enlarged lymph nodes should not be used

as an exclusion criterion for liver transplantation.

http://bjr.birjournals.org/cgi/reprint/71/852/1279.pdf

I'll keep my fingers crossed that yours will both be benign.

Best regards,

Dave

(father of (23); PSC 07/03; UC 08/03)

[Guest guest]

Dear Dawn and Don;

Sorry to hear about your problems of enlarged lymph nodes. But it's worth noting

again that enlarged lymph nodes around the liver are not uncommon in PSC. The

following study says that they found enlarged lymph nodes (lymphadenopathy)

around the liver in 66% of PSC patients, and that the presence of

lymphadenopathy is not associated with the development of cholangiocarcinoma.

They also conclude that the presence of enlarged lymph nodes should not be used

as an exclusion criterion for liver transplantation.

http://bjr.birjournals.org/cgi/reprint/71/852/1279.pdf

I'll keep my fingers crossed that yours will both be benign.

Best regards,

Dave

(father of (23); PSC 07/03; UC 08/03)

[Guest guest]

Thanks Dave,

I did read the study and in part, that's why I am not freaking out. I have also

been through the cancer scare before with this disease without enlarged lymph

nodes, only the last time it turned out I had severe B-12 def.

I just like being very informed, because quite frankly, I don't think many

doctors are, and thus far my body has not done much that the " text books "

indicate that it should. I have been trying to find out if there have been any

studies indicating any point in which there is a size that a lymph node does

indicate or has a higher incidence of being problematic, but thus far I cannot

find any studies containing such information.

Sometime I think I would be better off not thinking, but then I change my mind

as being an informed consumer has saved my butt many times.

Again thanks for sharing the article and any other information you may have on

this topic would be appriciated.

Dawn

>

> Dear Dawn and Don;

>

> Sorry to hear about your problems of enlarged lymph nodes. But it's worth

noting again that enlarged lymph nodes around the liver are not uncommon in PSC.

The following study says that they found enlarged lymph nodes (lymphadenopathy)

around the liver in 66% of PSC patients, and that the presence of

lymphadenopathy is not associated with the development of cholangiocarcinoma.

They also conclude that the presence of enlarged lymph nodes should not be used

as an exclusion criterion for liver transplantation.

>

> http://bjr.birjournals.org/cgi/reprint/71/852/1279.pdf

>

> I'll keep my fingers crossed that yours will both be benign.

>

> Best regards,

>

> Dave

> (father of (23); PSC 07/03; UC 08/03)

>

[Guest guest]

Thanks !

As always you are OUR calm in this PSC stormy site...I'm sending this web page to my doctor....If and when I have to have a Tx...I want the ruling to go my way of course!

Dawn....My L-nodes are near my bile duct...also check out what this site has on the CA19-9 test...If yours comes back high, please don't worry...with PSC the test produces a lot of false positives. Good luck!

Prayers and Peace to us all!

Don B. PSC / UC 11-08

Subject: Re: Dear God...this is getting old...To: Date: Tuesday, March 24, 2009, 4:08 AM

Dear Dawn and Don;Sorry to hear about your problems of enlarged lymph nodes. But it's worth noting again that enlarged lymph nodes around the liver are not uncommon in PSC. The following study says that they found enlarged lymph nodes (lymphadenopathy) around the liver in 66% of PSC patients, and that the presence of lymphadenopathy is not associated with the development of cholangiocarcinoma. They also conclude that the presence of enlarged lymph nodes should not be used as an exclusion criterion for liver transplantation.http://bjr.birjourn als.org/cgi/ reprint/71/ 852/1279. pdfI'll keep my fingers crossed that yours will both be benign.Best regards,Dave (father of (23); PSC 07/03; UC 08/03)

[Guest guest]

Thanks !

As always you are OUR calm in this PSC stormy site...I'm sending this web page to my doctor....If and when I have to have a Tx...I want the ruling to go my way of course!

Dawn....My L-nodes are near my bile duct...also check out what this site has on the CA19-9 test...If yours comes back high, please don't worry...with PSC the test produces a lot of false positives. Good luck!

Prayers and Peace to us all!

Don B. PSC / UC 11-08

Subject: Re: Dear God...this is getting old...To: Date: Tuesday, March 24, 2009, 4:08 AM

Dear Dawn and Don;Sorry to hear about your problems of enlarged lymph nodes. But it's worth noting again that enlarged lymph nodes around the liver are not uncommon in PSC. The following study says that they found enlarged lymph nodes (lymphadenopathy) around the liver in 66% of PSC patients, and that the presence of lymphadenopathy is not associated with the development of cholangiocarcinoma. They also conclude that the presence of enlarged lymph nodes should not be used as an exclusion criterion for liver transplantation.http://bjr.birjourn als.org/cgi/ reprint/71/ 852/1279. pdfI'll keep my fingers crossed that yours will both be benign.Best regards,Dave (father of (23); PSC 07/03; UC 08/03)

[Guest guest]

Thanks !

As always you are OUR calm in this PSC stormy site...I'm sending this web page to my doctor....If and when I have to have a Tx...I want the ruling to go my way of course!

Dawn....My L-nodes are near my bile duct...also check out what this site has on the CA19-9 test...If yours comes back high, please don't worry...with PSC the test produces a lot of false positives. Good luck!

Prayers and Peace to us all!

Don B. PSC / UC 11-08

Subject: Re: Dear God...this is getting old...To: Date: Tuesday, March 24, 2009, 4:08 AM

Dear Dawn and Don;Sorry to hear about your problems of enlarged lymph nodes. But it's worth noting again that enlarged lymph nodes around the liver are not uncommon in PSC. The following study says that they found enlarged lymph nodes (lymphadenopathy) around the liver in 66% of PSC patients, and that the presence of lymphadenopathy is not associated with the development of cholangiocarcinoma. They also conclude that the presence of enlarged lymph nodes should not be used as an exclusion criterion for liver transplantation.http://bjr.birjourn als.org/cgi/ reprint/71/ 852/1279. pdfI'll keep my fingers crossed that yours will both be benign.Best regards,Dave (father of (23); PSC 07/03; UC 08/03)