Re: Never thought I'd be so excited to start chemo and radiation...

[Guest guest]

Leo, I cannot answer your question, but I am sure someone with the knowledge you need will answer you as soon as they see your post. I am so happy for you and I do go to Mayo so I know you will be in the best place for your needs.

Bettyann (SC)

[Guest guest]

Leo, I cannot answer your question, but I am sure someone with the knowledge you need will answer you as soon as they see your post. I am so happy for you and I do go to Mayo so I know you will be in the best place for your needs.

Bettyann (SC)

[Guest guest]

Leo, I cannot answer your question, but I am sure someone with the knowledge you need will answer you as soon as they see your post. I am so happy for you and I do go to Mayo so I know you will be in the best place for your needs.

Bettyann (SC)

[Guest guest]

Leo,

Hi! Congratulations on getting into the Protocol! (I know, such a weird

sentence to write/thing to want!)

I'm sure you're already aware, but Mayo has a pretty informative website where

you can search out different information. I haven't been in the protocol

myself, so I can't give you any firsthand advice; but here's the link to their

chemo page:

http://www.mayoclinic.org/chemotherapy/

Best of luck!

Sandi in VA

[Guest guest]

Leo,

Hi! Congratulations on getting into the Protocol! (I know, such a weird

sentence to write/thing to want!)

I'm sure you're already aware, but Mayo has a pretty informative website where

you can search out different information. I haven't been in the protocol

myself, so I can't give you any firsthand advice; but here's the link to their

chemo page:

http://www.mayoclinic.org/chemotherapy/

Best of luck!

Sandi in VA

[Guest guest]

Leo,

Hi! Congratulations on getting into the Protocol! (I know, such a weird

sentence to write/thing to want!)

I'm sure you're already aware, but Mayo has a pretty informative website where

you can search out different information. I haven't been in the protocol

myself, so I can't give you any firsthand advice; but here's the link to their

chemo page:

http://www.mayoclinic.org/chemotherapy/

Best of luck!

Sandi in VA

[Guest guest]

>

> I'm nervous about chemo and radiation therapy, but I feel like I

have a new lease on life. My wife and I were crying in Dr. Musek's

room today when he told us he didn't find any tumors on my MRCP and

chest CT scan. So I have a positive FISH test but no signs of

malignant tumors at this point. I am thrilled!!!

Been there, bought that t-shirt. As bad as it was to receive my CCa

diagnosis two years ago, I was absolutely ECSTATIC to get the news

three weeks later that there weren't any metastases which would

preclude my getting a transplant. The oncology resident who broke

the news to me didn't even realize that I hadn't already been told

by the department head, and just launched into a review of my CT and

PET scans with me. He stopped talking when I started to dissolve

into my chair for no apparent reason.

As far as what you need to know about the Mayo protocol, I suggest

you read Franson's blog at http://bbfranson.blogspot.com/,

which covers her husband's cancer diagnosis, treatment and

transplant last year. I went through the same thing in 2007 and

came through fine. You will, too. Best wishes.

Gene

[Guest guest]

>

> I'm nervous about chemo and radiation therapy, but I feel like I

have a new lease on life. My wife and I were crying in Dr. Musek's

room today when he told us he didn't find any tumors on my MRCP and

chest CT scan. So I have a positive FISH test but no signs of

malignant tumors at this point. I am thrilled!!!

Been there, bought that t-shirt. As bad as it was to receive my CCa

diagnosis two years ago, I was absolutely ECSTATIC to get the news

three weeks later that there weren't any metastases which would

preclude my getting a transplant. The oncology resident who broke

the news to me didn't even realize that I hadn't already been told

by the department head, and just launched into a review of my CT and

PET scans with me. He stopped talking when I started to dissolve

into my chair for no apparent reason.

As far as what you need to know about the Mayo protocol, I suggest

you read Franson's blog at http://bbfranson.blogspot.com/,

which covers her husband's cancer diagnosis, treatment and

transplant last year. I went through the same thing in 2007 and

came through fine. You will, too. Best wishes.

Gene

[Guest guest]

>

> I'm nervous about chemo and radiation therapy, but I feel like I

have a new lease on life. My wife and I were crying in Dr. Musek's

room today when he told us he didn't find any tumors on my MRCP and

chest CT scan. So I have a positive FISH test but no signs of

malignant tumors at this point. I am thrilled!!!

Been there, bought that t-shirt. As bad as it was to receive my CCa

diagnosis two years ago, I was absolutely ECSTATIC to get the news

three weeks later that there weren't any metastases which would

preclude my getting a transplant. The oncology resident who broke

the news to me didn't even realize that I hadn't already been told

by the department head, and just launched into a review of my CT and

PET scans with me. He stopped talking when I started to dissolve

into my chair for no apparent reason.

As far as what you need to know about the Mayo protocol, I suggest

you read Franson's blog at http://bbfranson.blogspot.com/,

which covers her husband's cancer diagnosis, treatment and

transplant last year. I went through the same thing in 2007 and

came through fine. You will, too. Best wishes.

Gene

[Guest guest]

Hi Leo,

I am currently undergoing to the protocol at Washington University in

StL. Here is my blog that tells about my journey:

http://pscgenevieve.blogspot.com/

Best of Luck to you,

Genevieve

UC 1983, J-Pouch 1999, PSC 12/07, CCA 10/08

>

> I just got back from the hospital and UW is putting me into the

Mayo Protocol. Halleluja!

>

> I'm nervous about chemo and radiation therapy, but I feel like I

have a new lease on life. My wife and I were crying in Dr. Musek's

room today when he told us he didn't find any tumors on my MRCP and

chest CT scan. So I have a positive FISH test but no signs of

malignant tumors at this point. I am thrilled!!!

>

> Do any fellow group people out there have a moment to help me

understand what I need to about the Mayo Protocol's chemo and

radiation? Any suggestions? Any help at all would be wonderful.

>

> Thank you all so much for your reassurances this weekend.

>

> Blessings and prayers to you all,

>

> -leo

>

[Guest guest]

Hi Leo,

I am currently undergoing to the protocol at Washington University in

StL. Here is my blog that tells about my journey:

http://pscgenevieve.blogspot.com/

Best of Luck to you,

Genevieve

UC 1983, J-Pouch 1999, PSC 12/07, CCA 10/08

>

> I just got back from the hospital and UW is putting me into the

Mayo Protocol. Halleluja!

>

> I'm nervous about chemo and radiation therapy, but I feel like I

have a new lease on life. My wife and I were crying in Dr. Musek's

room today when he told us he didn't find any tumors on my MRCP and

chest CT scan. So I have a positive FISH test but no signs of

malignant tumors at this point. I am thrilled!!!

>

> Do any fellow group people out there have a moment to help me

understand what I need to about the Mayo Protocol's chemo and

radiation? Any suggestions? Any help at all would be wonderful.

>

> Thank you all so much for your reassurances this weekend.

>

> Blessings and prayers to you all,

>

> -leo

>

[Guest guest]

Leo,

I was talked to about the mayo protocol before Thankgiving my FISH

came back negative. I also go to UW. Did you meet with a transplant

dr? Did you have Dr. Pfau?

Anyhow, I had another ERCP last Friday and I'm waiting for the call.

If this one looks bad I will be doing the mayo protocol as well. I

have been staring at my phone waiting for it to light up with Dr.

Pfaus number. There are several people who have gone through it. I

have the links bookmarked, both are on here and have been very

helpful. and Genevieve. I have been reading their blogs to

prepare myself. There is a lot to know, if you have any specific

questions let me know. I would be happy to take a stab. Also, I am on

facebook. Ian suggested you as a friend to me, so I added.

Good luck,

Holly

http://pscgenevieve.blogspot.com/

http://bbfranson.blogspot.com/2008_09_01_archive.html

[Guest guest]

Thanks Holly and everyone else for your replies.I have actually been seeing Reichelderfer at UW (though Pfau and/or Gomnitz have done an emergency ERCP or two on me in the past).I met with Dr. Foley in transplant and then just met with Dr. Musat Monday to get the go-ahead after my MRCP and Chest CT showed no visible tumors. After reviewing my charts and MRCPs, etc I am pretty sure that my bile ducts are so borked (for lack of a better term) that this makes sense to all the Drs involved at this point. I have been talking with a friend who has been through parts of this too and he suggested I have my files sent to Gores at Mayo just to get a double check. I am leaning that way, but I also have an appointment with an oncologist tomorrow at the cancer center here at UW. I had one

previous positive test 4 years ago when I was initially diagnosed, but that turned out to be a false positive. Now though, my PSC has come on so strong over the past few years that in most points my right hepatic is almost cut off all over the place and the atypia is getting worse and worse between every ERCP.The hard thing that I am weighing is that most docs have told me they want me to keep my original liver as long as possible, but right after they say that and look at my charts, FISH results and my MRCPs with and without contrast they realize how bad the flow is even with stenting and balloon dialation and based on the results they think it'll be full blown tumors soon and my CA19=9 has been rising alarmingly over the past year to two years.-leoTo: Sent: Wednesday, February 11, 2009 7:44:15 PMSubject: Re: Never thought I'd be so excited to start chemo and radiation...

Leo,

I was talked to about the mayo protocol before Thankgiving my FISH

came back negative. I also go to UW. Did you meet with a transplant

dr? Did you have Dr. Pfau?

Anyhow, I had another ERCP last Friday and I'm waiting for the call.

If this one looks bad I will be doing the mayo protocol as well. I

have been staring at my phone waiting for it to light up with Dr.

Pfaus number. There are several people who have gone through it. I

have the links bookmarked, both are on here and have been very

helpful. and Genevieve. I have been reading their blogs to

prepare myself. There is a lot to know, if you have any specific

questions let me know. I would be happy to take a stab. Also, I am on

facebook. Ian suggested you as a friend to me, so I added.

Good luck,

Holly

http://pscgenevieve .blogspot. com/

http://bbfranson. blogspot. com/2008_ 09_01_archive. html

[Guest guest]

Leo!

I wish you the best of luck and please keep me informed. Just a funny

little story to make you smile, like I said I was there on Friday for

an ERCP. Dr. Reichendelfer was almost prancing through preop he was so

happy it was Friday. He was whistling and singing etc. I hear he does

requests sometimes and loves the Eagles (my nurse told me). He seems

really great.

Your in my thoughts,

Holly

[Guest guest]

Holly,I just realized I hadn't wished you good luck for good test results. I hope they turn out well and I'll be sending you good thoughts!-leoTo: Sent: Wednesday, February 11, 2009 7:44:15 PMSubject: Re:

Never thought I'd be so excited to start chemo and radiation...

Leo,

I was talked to about the mayo protocol before Thankgiving my FISH

came back negative. I also go to UW. Did you meet with a transplant

dr? Did you have Dr. Pfau?

Anyhow, I had another ERCP last Friday and I'm waiting for the call.

If this one looks bad I will be doing the mayo protocol as well. I

have been staring at my phone waiting for it to light up with Dr.

Pfaus number. There are several people who have gone through it. I

have the links bookmarked, both are on here and have been very

helpful. and Genevieve. I have been reading their blogs to

prepare myself. There is a lot to know, if you have any specific

questions let me know. I would be happy to take a stab. Also, I am on

facebook. Ian suggested you as a friend to me, so I added.

Good luck,

Holly

http://pscgenevieve .blogspot. com/

http://bbfranson. blogspot. com/2008_ 09_01_archive. html

[Guest guest]

Holly,Heh, yup that sounds like Mark (er Doc Reichelderfer). I would have to say right now I'm thrilled to hear his singing because in my mind his constant monitoring of me is what helped catch my recent positive FISH test so early. =) I'll take any miracles I can get.Be well,-leoTo: Sent: Wednesday, February 11, 2009 10:47:17 PMSubject: Re: Never thought I'd be so excited to start chemo and radiation...

Leo!

I wish you the best of luck and please keep me informed. Just a funny

little story to make you smile, like I said I was there on Friday for

an ERCP. Dr. Reichendelfer was almost prancing through preop he was so

happy it was Friday. He was whistling and singing etc. I hear he does

requests sometimes and loves the Eagles (my nurse told me). He seems

really great.

Your in my thoughts,

Holly