Re: Questions! Overwhelmed!

[Guest guest]

Hi a

My goodness what a journey you two have been on,

I am sorry I am unable to help with your question, but do send my best

wishes, hopefully others will be able to give you more information.

> The cancer returned just before Christmas again.  Now they say that

he can not have a liver transplant for another 2 years...maybe.  His

body from the PSC continues to deteriorate, I use megase to stimulate

his appetite.  Our gastro doc has increased is Actigal to 1800mg /

day....

>  

> Would someone please help me see through this and let me know what I

can do or am facing.......does having cancer really disqualify you for

a liver transplant if the cancer is removed????

>  

> Thanks...

>

[Guest guest]

Hi a

My goodness what a journey you two have been on,

I am sorry I am unable to help with your question, but do send my best

wishes, hopefully others will be able to give you more information.

> The cancer returned just before Christmas again.  Now they say that

he can not have a liver transplant for another 2 years...maybe.  His

body from the PSC continues to deteriorate, I use megase to stimulate

his appetite.  Our gastro doc has increased is Actigal to 1800mg /

day....

>  

> Would someone please help me see through this and let me know what I

can do or am facing.......does having cancer really disqualify you for

a liver transplant if the cancer is removed????

>  

> Thanks...

>

[Guest guest]

Hi a

My goodness what a journey you two have been on,

I am sorry I am unable to help with your question, but do send my best

wishes, hopefully others will be able to give you more information.

> The cancer returned just before Christmas again.  Now they say that

he can not have a liver transplant for another 2 years...maybe.  His

body from the PSC continues to deteriorate, I use megase to stimulate

his appetite.  Our gastro doc has increased is Actigal to 1800mg /

day....

>  

> Would someone please help me see through this and let me know what I

can do or am facing.......does having cancer really disqualify you for

a liver transplant if the cancer is removed????

>  

> Thanks...

>

[Guest guest]

I wish that I had some great knowledge that I could give you but I don't. I can

only say that my heart goes out to you and to hang in there. A special prayer

has been sent up for you.

I recently had a kidney cancer scare and I was told that I would have to be

cancer free for 5 years before they would consider me for transplant even with

the tumor removed. I don't know the reasons behind that decision but that is

what they said. Now, I live in Texas but the transplant center is in Louisiana.

I don't know if the rules are different for different states.

Hang in There

>>> " a Gray " bobbie.gray@...> 1/14/2009 12:47 PM >>>

Please forgive me for such a lengthy e-mail. I am a new member and am just

highlighting the journey that we have been on.....

My husband was diagnosed with a stone in his bile duct in May of 2007. During a

procedure to remove it, it was discovered that his bile ducts below his liver

were totally hardened. Emergency surgery was preformed to remove those ducts,

remove his gallbladder and make new ducts into his liver with his small

intestine. After the 8 1/2 hour surgery, he was moved to intensive care and

after a week was taken off of the vent, etc. Several days later, his colon

ruptured, and he went into complete renal and liver failure and had a stroke.

Our journey begins.

He remained in intensive care for 7 1/2 months with consistent bleeds (275 units

of blood), 2 more surgery's and on and on. He came home the day after

Thanksgiving 2007. In April, we found out that his bladder cancer had returned

and we went through chemo which made him very ill. Prior to this, the surgeon

and gastro doc said that my husband had surprised all by his tenacious ability

to " hang in there " and we could be looking at a liver transplant. The cancer,

they said, kicked it out at least two years.

He has now been in the every month since January of 2008 for one infection or

another, usually Ecoli in his blood stream. We now think the cause is urine

residuals in his bladder and we catheterize 4 times a day.

The PSC has dropped his weight from 290 to 170. All the most recent tests have

shown his Bolivian below 1, the other liver functions " within normal " for

someone in his condition. He has never had colitis, IBS or any of the suspected

related causes. He was treated with BCG for his origianl cancer however, that

now we know messes with your immune system.

The cancer returned just before Christmas again. Now they say that he can not

have a liver transplant for another 2 years...maybe. His body from the PSC

continues to deteriorate, I use megase to stimulate his appetite. Our gastro

doc has increased is Actigal to 1800mg / day....

Would someone please help me see through this and let me know what I can do or

am facing.......does having cancer really disqualify you for a liver transplant

if the cancer is removed????

Thanks...

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[Guest guest]

I wish that I had some great knowledge that I could give you but I don't. I can

only say that my heart goes out to you and to hang in there. A special prayer

has been sent up for you.

I recently had a kidney cancer scare and I was told that I would have to be

cancer free for 5 years before they would consider me for transplant even with

the tumor removed. I don't know the reasons behind that decision but that is

what they said. Now, I live in Texas but the transplant center is in Louisiana.

I don't know if the rules are different for different states.

Hang in There

>>> " a Gray " bobbie.gray@...> 1/14/2009 12:47 PM >>>

Please forgive me for such a lengthy e-mail. I am a new member and am just

highlighting the journey that we have been on.....

My husband was diagnosed with a stone in his bile duct in May of 2007. During a

procedure to remove it, it was discovered that his bile ducts below his liver

were totally hardened. Emergency surgery was preformed to remove those ducts,

remove his gallbladder and make new ducts into his liver with his small

intestine. After the 8 1/2 hour surgery, he was moved to intensive care and

after a week was taken off of the vent, etc. Several days later, his colon

ruptured, and he went into complete renal and liver failure and had a stroke.

Our journey begins.

He remained in intensive care for 7 1/2 months with consistent bleeds (275 units

of blood), 2 more surgery's and on and on. He came home the day after

Thanksgiving 2007. In April, we found out that his bladder cancer had returned

and we went through chemo which made him very ill. Prior to this, the surgeon

and gastro doc said that my husband had surprised all by his tenacious ability

to " hang in there " and we could be looking at a liver transplant. The cancer,

they said, kicked it out at least two years.

He has now been in the every month since January of 2008 for one infection or

another, usually Ecoli in his blood stream. We now think the cause is urine

residuals in his bladder and we catheterize 4 times a day.

The PSC has dropped his weight from 290 to 170. All the most recent tests have

shown his Bolivian below 1, the other liver functions " within normal " for

someone in his condition. He has never had colitis, IBS or any of the suspected

related causes. He was treated with BCG for his origianl cancer however, that

now we know messes with your immune system.

The cancer returned just before Christmas again. Now they say that he can not

have a liver transplant for another 2 years...maybe. His body from the PSC

continues to deteriorate, I use megase to stimulate his appetite. Our gastro

doc has increased is Actigal to 1800mg / day....

Would someone please help me see through this and let me know what I can do or

am facing.......does having cancer really disqualify you for a liver transplant

if the cancer is removed????

Thanks...

===========================================================

This message is confidential, intended only

for the named recipient(s) and may contain

information that is privileged or exempt from

disclosure under applicable law. If you are

not the intended recipient(s), you are notified

that the dissemination, distribution or copying

of this message is strictly prohibited. If you

received this message in error, or are not the

named recipient(s), please notify the sender

and delete this e-mail from your computer.

ETMC has implemented secure messaging for

certain types of messages. For more information

about our secure messaging system, go to:

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Thank you.

===========================================================

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N:Wilkinson;

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[Guest guest]

I wish that I had some great knowledge that I could give you but I don't. I can

only say that my heart goes out to you and to hang in there. A special prayer

has been sent up for you.

I recently had a kidney cancer scare and I was told that I would have to be

cancer free for 5 years before they would consider me for transplant even with

the tumor removed. I don't know the reasons behind that decision but that is

what they said. Now, I live in Texas but the transplant center is in Louisiana.

I don't know if the rules are different for different states.

Hang in There

>>> " a Gray " bobbie.gray@...> 1/14/2009 12:47 PM >>>

Please forgive me for such a lengthy e-mail. I am a new member and am just

highlighting the journey that we have been on.....

My husband was diagnosed with a stone in his bile duct in May of 2007. During a

procedure to remove it, it was discovered that his bile ducts below his liver

were totally hardened. Emergency surgery was preformed to remove those ducts,

remove his gallbladder and make new ducts into his liver with his small

intestine. After the 8 1/2 hour surgery, he was moved to intensive care and

after a week was taken off of the vent, etc. Several days later, his colon

ruptured, and he went into complete renal and liver failure and had a stroke.

Our journey begins.

He remained in intensive care for 7 1/2 months with consistent bleeds (275 units

of blood), 2 more surgery's and on and on. He came home the day after

Thanksgiving 2007. In April, we found out that his bladder cancer had returned

and we went through chemo which made him very ill. Prior to this, the surgeon

and gastro doc said that my husband had surprised all by his tenacious ability

to " hang in there " and we could be looking at a liver transplant. The cancer,

they said, kicked it out at least two years.

He has now been in the every month since January of 2008 for one infection or

another, usually Ecoli in his blood stream. We now think the cause is urine

residuals in his bladder and we catheterize 4 times a day.

The PSC has dropped his weight from 290 to 170. All the most recent tests have

shown his Bolivian below 1, the other liver functions " within normal " for

someone in his condition. He has never had colitis, IBS or any of the suspected

related causes. He was treated with BCG for his origianl cancer however, that

now we know messes with your immune system.

The cancer returned just before Christmas again. Now they say that he can not

have a liver transplant for another 2 years...maybe. His body from the PSC

continues to deteriorate, I use megase to stimulate his appetite. Our gastro

doc has increased is Actigal to 1800mg / day....

Would someone please help me see through this and let me know what I can do or

am facing.......does having cancer really disqualify you for a liver transplant

if the cancer is removed????

Thanks...

===========================================================

This message is confidential, intended only

for the named recipient(s) and may contain

information that is privileged or exempt from

disclosure under applicable law. If you are

not the intended recipient(s), you are notified

that the dissemination, distribution or copying

of this message is strictly prohibited. If you

received this message in error, or are not the

named recipient(s), please notify the sender

and delete this e-mail from your computer.

ETMC has implemented secure messaging for

certain types of messages. For more information

about our secure messaging system, go to:

http://www.etmc.org/mail/

Thank you.

===========================================================

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X-GWTYPE:USER

FN:Wilkinson,

ORG:;Human Resources

EMAIL;WORK;PREF;NGW:lindawilkinson@...

N:Wilkinson;

END:VCARD

[Guest guest]

Welcome a, sorry for such a rough diagnosis and time. We have had some tough stories before which have been gotten through to a relatively normal life and have members that have been transplanted after a cancer diagnosis, so don't give up hope.

We will pray for you and your family and be here for you. You are not alone!Prayers, Ian

Please forgive me for such a lengthy e-mail. I am a new member and am just highlighting the journey that we have been on.....

My husband was diagnosed with a stone in his bile duct in May of 2007. During a procedure to remove it, it was discovered that his bile ducts below his liver were totally hardened. Emergency surgery was preformed to remove those ducts, remove his gallbladder and make new ducts into his liver with his small intestine. After the 8 1/2 hour surgery, he was moved to intensive care and after a week was taken off of the vent, etc. Several days later, his colon ruptured, and he went into complete renal and liver failure and had a stroke. Our journey begins.

He remained in intensive care for 7 1/2 months with consistent bleeds (275 units of blood), 2 more surgery's and on and on. He came home the day after Thanksgiving 2007. In April, we found out that his bladder cancer had returned and we went through chemo which made him very ill. Prior to this, the surgeon and gastro doc said that my husband had surprised all by his tenacious ability to " hang in there " and we could be looking at a liver transplant. The cancer, they said, kicked it out at least two years.

He has now been in the every month since January of 2008 for one infection or another, usually Ecoli in his blood stream. We now think the cause is urine residuals in his bladder and we catheterize 4 times a day.

The PSC has dropped his weight from 290 to 170. All the most recent tests have shown his Bolivian below 1, the other liver functions " within normal " for someone in his condition. He has never had colitis, IBS or any of the suspected related causes. He was treated with BCG for his origianl cancer however, that now we know messes with your immune system.

The cancer returned just before Christmas again. Now they say that he can not have a liver transplant for another 2 years...maybe. His body from the PSC continues to deteriorate, I use megase to stimulate his appetite. Our gastro doc has increased is Actigal to 1800mg / day....

Would someone please help me see through this and let me know what I can do or am facing.......does having cancer really disqualify you for a liver transplant if the cancer is removed????

Thanks...

-- Ian Cribb P.Eng.

[Guest guest]

Welcome a, sorry for such a rough diagnosis and time. We have had some tough stories before which have been gotten through to a relatively normal life and have members that have been transplanted after a cancer diagnosis, so don't give up hope.

We will pray for you and your family and be here for you. You are not alone!Prayers, Ian

Please forgive me for such a lengthy e-mail. I am a new member and am just highlighting the journey that we have been on.....

My husband was diagnosed with a stone in his bile duct in May of 2007. During a procedure to remove it, it was discovered that his bile ducts below his liver were totally hardened. Emergency surgery was preformed to remove those ducts, remove his gallbladder and make new ducts into his liver with his small intestine. After the 8 1/2 hour surgery, he was moved to intensive care and after a week was taken off of the vent, etc. Several days later, his colon ruptured, and he went into complete renal and liver failure and had a stroke. Our journey begins.

He remained in intensive care for 7 1/2 months with consistent bleeds (275 units of blood), 2 more surgery's and on and on. He came home the day after Thanksgiving 2007. In April, we found out that his bladder cancer had returned and we went through chemo which made him very ill. Prior to this, the surgeon and gastro doc said that my husband had surprised all by his tenacious ability to " hang in there " and we could be looking at a liver transplant. The cancer, they said, kicked it out at least two years.

He has now been in the every month since January of 2008 for one infection or another, usually Ecoli in his blood stream. We now think the cause is urine residuals in his bladder and we catheterize 4 times a day.

The PSC has dropped his weight from 290 to 170. All the most recent tests have shown his Bolivian below 1, the other liver functions " within normal " for someone in his condition. He has never had colitis, IBS or any of the suspected related causes. He was treated with BCG for his origianl cancer however, that now we know messes with your immune system.

The cancer returned just before Christmas again. Now they say that he can not have a liver transplant for another 2 years...maybe. His body from the PSC continues to deteriorate, I use megase to stimulate his appetite. Our gastro doc has increased is Actigal to 1800mg / day....

Would someone please help me see through this and let me know what I can do or am facing.......does having cancer really disqualify you for a liver transplant if the cancer is removed????

Thanks...

-- Ian Cribb P.Eng.

[Guest guest]

Welcome a, sorry for such a rough diagnosis and time. We have had some tough stories before which have been gotten through to a relatively normal life and have members that have been transplanted after a cancer diagnosis, so don't give up hope.

We will pray for you and your family and be here for you. You are not alone!Prayers, Ian

Please forgive me for such a lengthy e-mail. I am a new member and am just highlighting the journey that we have been on.....

My husband was diagnosed with a stone in his bile duct in May of 2007. During a procedure to remove it, it was discovered that his bile ducts below his liver were totally hardened. Emergency surgery was preformed to remove those ducts, remove his gallbladder and make new ducts into his liver with his small intestine. After the 8 1/2 hour surgery, he was moved to intensive care and after a week was taken off of the vent, etc. Several days later, his colon ruptured, and he went into complete renal and liver failure and had a stroke. Our journey begins.

He remained in intensive care for 7 1/2 months with consistent bleeds (275 units of blood), 2 more surgery's and on and on. He came home the day after Thanksgiving 2007. In April, we found out that his bladder cancer had returned and we went through chemo which made him very ill. Prior to this, the surgeon and gastro doc said that my husband had surprised all by his tenacious ability to " hang in there " and we could be looking at a liver transplant. The cancer, they said, kicked it out at least two years.

He has now been in the every month since January of 2008 for one infection or another, usually Ecoli in his blood stream. We now think the cause is urine residuals in his bladder and we catheterize 4 times a day.

The PSC has dropped his weight from 290 to 170. All the most recent tests have shown his Bolivian below 1, the other liver functions " within normal " for someone in his condition. He has never had colitis, IBS or any of the suspected related causes. He was treated with BCG for his origianl cancer however, that now we know messes with your immune system.

The cancer returned just before Christmas again. Now they say that he can not have a liver transplant for another 2 years...maybe. His body from the PSC continues to deteriorate, I use megase to stimulate his appetite. Our gastro doc has increased is Actigal to 1800mg / day....

Would someone please help me see through this and let me know what I can do or am facing.......does having cancer really disqualify you for a liver transplant if the cancer is removed????

Thanks...

-- Ian Cribb P.Eng.

[Guest guest]

>

> does having cancer really disqualify you for a liver transplant if

the cancer is removed????

It depends on the type and the extent of the cancer before it was

removed. For colon cancer, most transplant centers want to see five

years of remission before considering a liver transplant. I'm not

familiar with bladder cancer or how quickly it metastacizes, but

centers are extremely leery about performing organ transplants

unless the chance of recurrence or metastasis is very low.

Immunosuppressive drugs allow all types of cancer to flourish, so

it's imperative that there be none left anywhere in the body post-

transplant.

Your husband's Bolivian is below 1.0? Either that's a new testing

protocol that I'm not aware of, or your spellchecker has come up

with a creative variation for " bilirubin! " ; )

Gene

[Guest guest]

>

> does having cancer really disqualify you for a liver transplant if

the cancer is removed????

It depends on the type and the extent of the cancer before it was

removed. For colon cancer, most transplant centers want to see five

years of remission before considering a liver transplant. I'm not

familiar with bladder cancer or how quickly it metastacizes, but

centers are extremely leery about performing organ transplants

unless the chance of recurrence or metastasis is very low.

Immunosuppressive drugs allow all types of cancer to flourish, so

it's imperative that there be none left anywhere in the body post-

transplant.

Your husband's Bolivian is below 1.0? Either that's a new testing

protocol that I'm not aware of, or your spellchecker has come up

with a creative variation for " bilirubin! " ; )

Gene

[Guest guest]

>

> does having cancer really disqualify you for a liver transplant if

the cancer is removed????

It depends on the type and the extent of the cancer before it was

removed. For colon cancer, most transplant centers want to see five

years of remission before considering a liver transplant. I'm not

familiar with bladder cancer or how quickly it metastacizes, but

centers are extremely leery about performing organ transplants

unless the chance of recurrence or metastasis is very low.

Immunosuppressive drugs allow all types of cancer to flourish, so

it's imperative that there be none left anywhere in the body post-

transplant.

Your husband's Bolivian is below 1.0? Either that's a new testing

protocol that I'm not aware of, or your spellchecker has come up

with a creative variation for " bilirubin! " ; )

Gene

[Guest guest]

Thank-you, it is billiruban...spell check mishap.

> >

> > does having cancer really disqualify you for a liver transplant

if

> the cancer is removed????

>

> It depends on the type and the extent of the cancer before it was

> removed. For colon cancer, most transplant centers want to see

five

> years of remission before considering a liver transplant. I'm not

> familiar with bladder cancer or how quickly it metastacizes, but

> centers are extremely leery about performing organ transplants

> unless the chance of recurrence or metastasis is very low.

> Immunosuppressive drugs allow all types of cancer to flourish, so

> it's imperative that there be none left anywhere in the body post-

> transplant.

>

> Your husband's Bolivian is below 1.0? Either that's a new testing

> protocol that I'm not aware of, or your spellchecker has come up

> with a creative variation for " bilirubin! " ; )

>

> Gene

>

[Guest guest]

Thank-you, it is billiruban...spell check mishap.

> >

> > does having cancer really disqualify you for a liver transplant

if

> the cancer is removed????

>

> It depends on the type and the extent of the cancer before it was

> removed. For colon cancer, most transplant centers want to see

five

> years of remission before considering a liver transplant. I'm not

> familiar with bladder cancer or how quickly it metastacizes, but

> centers are extremely leery about performing organ transplants

> unless the chance of recurrence or metastasis is very low.

> Immunosuppressive drugs allow all types of cancer to flourish, so

> it's imperative that there be none left anywhere in the body post-

> transplant.

>

> Your husband's Bolivian is below 1.0? Either that's a new testing

> protocol that I'm not aware of, or your spellchecker has come up

> with a creative variation for " bilirubin! " ; )

>

> Gene

>

[Guest guest]

I wasn’t aware of the waiting period for TX if a previous cancer

diagnosis was given, but all things considered it does make sense even if we don’t

want to hear it. Does anyone know if there is any sort of waiting period for

high grade dysplasia in the colon or recent J pouch surgery? This might apply

to a lot of us.

Rick

From:

[mailto: ] On Behalf

Of Gene A.

Sent: Wednesday, January 14, 2009 4:11 PM

To:

Subject: Re: Questions! Overwhelmed!

>

> does having cancer really disqualify you for a liver transplant if

the cancer is removed????

It depends on the type and the extent of the cancer before it was

removed. For colon cancer, most transplant centers want to see five

years of remission before considering a liver transplant. I'm not

familiar with bladder cancer or how quickly it metastacizes, but

centers are extremely leery about performing organ transplants

unless the chance of recurrence or metastasis is very low.

Immunosuppressive drugs allow all types of cancer to flourish, so

it's imperative that there be none left anywhere in the body post-

transplant.

Your husband's Bolivian is below 1.0? Either that's a new testing

protocol that I'm not aware of, or your spellchecker has come up

with a creative variation for " bilirubin! " ; )

Gene

[Guest guest]

I wasn’t aware of the waiting period for TX if a previous cancer

diagnosis was given, but all things considered it does make sense even if we don’t

want to hear it. Does anyone know if there is any sort of waiting period for

high grade dysplasia in the colon or recent J pouch surgery? This might apply

to a lot of us.

Rick

From:

[mailto: ] On Behalf

Of Gene A.

Sent: Wednesday, January 14, 2009 4:11 PM

To:

Subject: Re: Questions! Overwhelmed!

>

> does having cancer really disqualify you for a liver transplant if

the cancer is removed????

It depends on the type and the extent of the cancer before it was

removed. For colon cancer, most transplant centers want to see five

years of remission before considering a liver transplant. I'm not

familiar with bladder cancer or how quickly it metastacizes, but

centers are extremely leery about performing organ transplants

unless the chance of recurrence or metastasis is very low.

Immunosuppressive drugs allow all types of cancer to flourish, so

it's imperative that there be none left anywhere in the body post-

transplant.

Your husband's Bolivian is below 1.0? Either that's a new testing

protocol that I'm not aware of, or your spellchecker has come up

with a creative variation for " bilirubin! " ; )

Gene

[Guest guest]

I wasn’t aware of the waiting period for TX if a previous cancer

diagnosis was given, but all things considered it does make sense even if we don’t

want to hear it. Does anyone know if there is any sort of waiting period for

high grade dysplasia in the colon or recent J pouch surgery? This might apply

to a lot of us.

Rick

From:

[mailto: ] On Behalf

Of Gene A.

Sent: Wednesday, January 14, 2009 4:11 PM

To:

Subject: Re: Questions! Overwhelmed!

>

> does having cancer really disqualify you for a liver transplant if

the cancer is removed????

It depends on the type and the extent of the cancer before it was

removed. For colon cancer, most transplant centers want to see five

years of remission before considering a liver transplant. I'm not

familiar with bladder cancer or how quickly it metastacizes, but

centers are extremely leery about performing organ transplants

unless the chance of recurrence or metastasis is very low.

Immunosuppressive drugs allow all types of cancer to flourish, so

it's imperative that there be none left anywhere in the body post-

transplant.

Your husband's Bolivian is below 1.0? Either that's a new testing

protocol that I'm not aware of, or your spellchecker has come up

with a creative variation for " bilirubin! " ; )

Gene

[Guest guest]

a:

You have both been OVERWHELMED to the optimum.

This wonderful board is here for you and someone with more knowledge will soon

be answering you.

Prayers going out for you and yours.

Hugs,

Dee wife of Bob, UC, ileo, psc, arthritis

[Guest guest]

a:

You have both been OVERWHELMED to the optimum.

This wonderful board is here for you and someone with more knowledge will soon

be answering you.

Prayers going out for you and yours.

Hugs,

Dee wife of Bob, UC, ileo, psc, arthritis

[Guest guest]

a:

You have both been OVERWHELMED to the optimum.

This wonderful board is here for you and someone with more knowledge will soon

be answering you.

Prayers going out for you and yours.

Hugs,

Dee wife of Bob, UC, ileo, psc, arthritis

[Guest guest]

-

This is an important concern. It affects us all pre and post

transplant. For example: transplanted patients are screened very

carefully for skin cancers post tx due to the use of immunosuppressants.

By no means does this logic make your situation an easier; we'd all be

overwhelmed.

Penny

-- In , " Gene A. " wrote:

>

> --

> Immunosuppressive drugs allow all types of cancer to flourish, so

> it's imperative that there be none left anywhere in the body post-

> transplant.