Re: To Narice - We began here together

[Guest guest]

Nice to see you again and thanks so much for your kind words

Phil was diagnosed Stage 4 with Multiple liver mets

He had a 13 cm colon tumor which was NOT removed but was DISOLVED by the

chemo (probably Avastin) in Dec. 2004.

In April 2005 after examination a liver specialist determined that the liver

could not be resected and they could not use Radio Frequency Ablation

because the liver mets were covering almost the entire liver. BUT what they

could

do was do surgery to install a Hepatic Artery Infusion Pump which delivers

FUDR (a cousin to 5FU) directly to the liver.

The hope wasto beable to destroy the liver tumors in the same way we

destroyed the colon tumor. Well it was a great plan that may still work for many

of

you and it certainly gave Phil more quality time.

But in September we found that despite our best efforts the mets were

starting to grow.

We had not tried Erbitux so we tried that and CPT-11. It only made him sick.

About once a week in October he would become very nauseous and developed

tremendous back pain. The pain was resolved with a Fentanyl patch.It is a

wonderful thing IF meds like Oxicodene are not working for you.

In early Nov. Phil started bleeding The bleeding comes through the

intestines and is part of the liver dysfuction. He has had 2 transfusions

since.

In the beginning they had said surgery might spread the cancer. That did not

happen with the liver pump and yet I have second guessed our decission to

open him up and whether it could have done more harm than good. But I think even

in hind sight I'd have done it for a chance to rid him of cancer.

You just have to go with the best doctors and what is known and trust your

instincts then let go and let God handle the rest.

The ride has had so many twist and turns but as scary as it all was it was

in a weird way also wonderful. I have shared many precious things with my

husband and children and I know I will treassure everything the journey has

GIVEN

me like all of you dear dear friends.

Would that my husband and I could end this journey in a different way, like

theclean and clear club but I know that where he is going there is no cancer

and no suffering.

My heart is heavy yes but my faith is stronger. There will be joy for Phil

yet

AMEN

God Bless you all and the journeys you face

Narice

In a message dated 12/1/2005 4:15:34 PM Eastern Standard Time,

kitmacbride@... writes:

Dear Narice,

I have always followed your posts because your husband and I were

diagnosed with stage 4 cc at exactly the same time (June 2003). I had

colon, liver and lung mets although I think Phil just had colon and

liver mets at the time of dx. I often wondered why Phil never had

surgery to remove the tumor/tumors in his colon. Was it too large,

inoperable? Perhaps I am wrong about this but I believe he did not

have that surgery but went right on to chemo. I had the colon cancer

surgery. There were 4 tumors found, only one was malignant but bad

enough to break through the wall and metastasize.

I am so very sorry to read about Phil's condition now and that is has

become so critical. Obviously, it scares me too because of the same

time frame we both shared. I, too, was told to get my affairs in

order and that every day after six months was a gift. Like Phil, that

was exactly 2.5 years ago. I know you have your hands full now,

especially since Phil went back into the hospital last night but I

guess I am totally shocked because although I haven't read the

messages on this board as regularly as others (sometimes seeing the

terrible times both caretakers and colon cancer sufferers are having

and the loss of so many wonderful people on this board is so

depressing to me that I find it brings me down and is not always the

best thing for my morale). But, Narice, and my question can wait, of

course, I just can't believe how bad Phil got so quickly. It seemed

just a few months (weeks)? ago, he was doing quite well (although we

all know the longevity stats for most stage 4's). When did the

downhill slide begin? You know I am asking this for myself also. I

have not started the slide yet, as a matter of fact, the only real

problem I have is a bad cough from a lung met near my throat. (I have

about 13 mets in my lungs - both lobes - not pretty.) I have had two

doses of chest radiation this year (25 treatments) but it hasn't

helped so they are talking about putting a catheter down my throat to

treat the met directly that is causing me to cough. I have multiple

liver mets as well which so far, have not begun to give me trouble. I

am, like others on this board, a living time bomb. I try to cherish

each day as it comes. You talk of taking your paxil. For me it is

lexapro. I highly recommend it!

I have read your thoughts about your desire to continue to support the

colon cancer association when, as you say, the dust has settled. I

think that is wonderful and I know you can be of so much help in any

capacity like that....as a matter of fact, after died, it was

you who seemed to hold up this board so well. Thank you for that. I

know the newbies are so frightened as you and I were that first June

when we both signed on to this board. So much has happened. I wish

with all my heart that there had been another way that we would have

connected and not at a time of such shared misery, confusion and down

right terror.

I know is waiting in heaven for the time that Phil is ready to

join him. This monster of a disease is so insidious. It seems to

take the best people; good, decent people far too young to leave us.

May God bless Phil, you and your children. My prayers are with you.

I know your faith will see you through this. Say a prayer for me too.

Warm regards,

Kit

[Guest guest]

" I know is waiting in heaven for the time that Phil is ready to

join him. "

Kit has echoed my sentiments ; I was about to offer this meek

consolation for Narice and Donelle at this difficult time. who

has done so much to hold everyone together on this board, must be

working with invisible threads up there in heaven with some tricks

up his sleeve ; that I am sure of. The thought does give me

comfort .

I am praying for everyone, but especially for Phil and Glenn at the

moment. You are very much in my thoughts as I write with a very,

very heavy heart.

God bless.

Leyla

>

> Dear Narice,

> I have always followed your posts because your husband and I were

> diagnosed with stage 4 cc at exactly the same time (June 2003). I

had

> colon, liver and lung mets although I think Phil just had colon and

> liver mets at the time of dx. I often wondered why Phil never had

> surgery to remove the tumor/tumors in his colon. Was it too large,

> inoperable? Perhaps I am wrong about this but I believe he did not

> have that surgery but went right on to chemo. I had the colon

cancer

> surgery. There were 4 tumors found, only one was malignant but bad

> enough to break through the wall and metastasize.

>

> I am so very sorry to read about Phil's condition now and that is

has

> become so critical. Obviously, it scares me too because of the

same

> time frame we both shared. I, too, was told to get my affairs in

> order and that every day after six months was a gift. Like Phil,

that

> was exactly 2.5 years ago. I know you have your hands full now,

> especially since Phil went back into the hospital last night but I

> guess I am totally shocked because although I haven't read the

> messages on this board as regularly as others (sometimes seeing the

> terrible times both caretakers and colon cancer sufferers are

having

> and the loss of so many wonderful people on this board is so

> depressing to me that I find it brings me down and is not always

the

> best thing for my morale). But, Narice, and my question can wait,

of

> course, I just can't believe how bad Phil got so quickly. It

seemed

> just a few months (weeks)? ago, he was doing quite well (although

we

> all know the longevity stats for most stage 4's). When did the

> downhill slide begin? You know I am asking this for myself also.

I

> have not started the slide yet, as a matter of fact, the only real

> problem I have is a bad cough from a lung met near my throat. (I

have

> about 13 mets in my lungs - both lobes - not pretty.) I have had

two

> doses of chest radiation this year (25 treatments) but it hasn't

> helped so they are talking about putting a catheter down my throat

to

> treat the met directly that is causing me to cough. I have multiple

> liver mets as well which so far, have not begun to give me

trouble. I

> am, like others on this board, a living time bomb. I try to

cherish

> each day as it comes. You talk of taking your paxil. For me it is

> lexapro. I highly recommend it!

>

> I have read your thoughts about your desire to continue to support

the

> colon cancer association when, as you say, the dust has settled. I

> think that is wonderful and I know you can be of so much help in

any

> capacity like that....as a matter of fact, after died, it was

> you who seemed to hold up this board so well. Thank you for

that. I

> know the newbies are so frightened as you and I were that first

June

> when we both signed on to this board. So much has happened. I

wish

> with all my heart that there had been another way that we would

have

> connected and not at a time of such shared misery, confusion and

down

> right terror.

>

> I know is waiting in heaven for the time that Phil is ready

to

> join him. This monster of a disease is so insidious. It seems to

> take the best people; good, decent people far too young to leave

us.

>

> May God bless Phil, you and your children. My prayers are with

you.

> I know your faith will see you through this. Say a prayer for me

too.

> Warm regards,

> Kit

>

[Guest guest]

I wanted to say that I've been checking in on you all day. You

sound so strong - I hope I can be that way when my dad gets near. I

agree with Kit when I say this hits really close to home for me. I

joined this group just a month after you. My dad was dx in July

2003. You've been through a lot and I even printed out some of your

posts for options for my dad. They brought him great strength and

comfort and he wished only the best. Dad is doing OK but not great -

- I'm happy to have him up and around and able to work.

I pray for you to have much love and strength when you need it and a

comforting set of arms to fall into when you need that.

Kristi

>

>

> Nice to see you again and thanks so much for your kind words

> Phil was diagnosed Stage 4 with Multiple liver mets

> He had a 13 cm colon tumor which was NOT removed but was DISOLVED

by the

> chemo (probably Avastin) in Dec. 2004.

>

> In April 2005 after examination a liver specialist determined that

the liver

> could not be resected and they could not use Radio Frequency

Ablation

> because the liver mets were covering almost the entire liver. BUT

what they could

> do was do surgery to install a Hepatic Artery Infusion Pump which

delivers

> FUDR (a cousin to 5FU) directly to the liver.

> The hope wasto beable to destroy the liver tumors in the same way

we

> destroyed the colon tumor. Well it was a great plan that may still

work for many of

> you and it certainly gave Phil more quality time.

>

> But in September we found that despite our best efforts the mets

were

> starting to grow.

>

> We had not tried Erbitux so we tried that and CPT-11. It only made

him sick.

>

> About once a week in October he would become very nauseous and

developed

> tremendous back pain. The pain was resolved with a Fentanyl

patch.It is a

> wonderful thing IF meds like Oxicodene are not working for you.

>

> In early Nov. Phil started bleeding The bleeding comes through

the

> intestines and is part of the liver dysfuction. He has had 2

transfusions since.

>

> In the beginning they had said surgery might spread the cancer.

That did not

> happen with the liver pump and yet I have second guessed our

decission to

> open him up and whether it could have done more harm than good.

But I think even

> in hind sight I'd have done it for a chance to rid him of cancer.

>

> You just have to go with the best doctors and what is known and

trust your

> instincts then let go and let God handle the rest.

>

> The ride has had so many twist and turns but as scary as it all

was it was

> in a weird way also wonderful. I have shared many precious things

with my

> husband and children and I know I will treassure everything the

journey has GIVEN

> me like all of you dear dear friends.

>

> Would that my husband and I could end this journey in a different

way, like

> theclean and clear club but I know that where he is going there is

no cancer

> and no suffering.

>

> My heart is heavy yes but my faith is stronger. There will be joy

for Phil

> yet

> AMEN

>

> God Bless you all and the journeys you face

> Narice

>

>

>

>

>

> In a message dated 12/1/2005 4:15:34 PM Eastern Standard Time,

> kitmacbride@y... writes:

>

> Dear Narice,

> I have always followed your posts because your husband and I were

> diagnosed with stage 4 cc at exactly the same time (June 2003). I

had

> colon, liver and lung mets although I think Phil just had colon

and

> liver mets at the time of dx. I often wondered why Phil never had

> surgery to remove the tumor/tumors in his colon. Was it too

large,

> inoperable? Perhaps I am wrong about this but I believe he did

not

> have that surgery but went right on to chemo. I had the colon

cancer

> surgery. There were 4 tumors found, only one was malignant but

bad

> enough to break through the wall and metastasize.

>

> I am so very sorry to read about Phil's condition now and that is

has

> become so critical. Obviously, it scares me too because of the

same

> time frame we both shared. I, too, was told to get my affairs in

> order and that every day after six months was a gift. Like Phil,

that

> was exactly 2.5 years ago. I know you have your hands full now,

> especially since Phil went back into the hospital last night but I

> guess I am totally shocked because although I haven't read the

> messages on this board as regularly as others (sometimes seeing

the

> terrible times both caretakers and colon cancer sufferers are

having

> and the loss of so many wonderful people on this board is so

> depressing to me that I find it brings me down and is not always

the

> best thing for my morale). But, Narice, and my question can wait,

of

> course, I just can't believe how bad Phil got so quickly. It

seemed

> just a few months (weeks)? ago, he was doing quite well (although

we

> all know the longevity stats for most stage 4's). When did the

> downhill slide begin? You know I am asking this for myself

also. I

> have not started the slide yet, as a matter of fact, the only real

> problem I have is a bad cough from a lung met near my throat. (I

have

> about 13 mets in my lungs - both lobes - not pretty.) I have had

two

> doses of chest radiation this year (25 treatments) but it hasn't

> helped so they are talking about putting a catheter down my

throat to

> treat the met directly that is causing me to cough. I have

multiple

> liver mets as well which so far, have not begun to give me

trouble. I

> am, like others on this board, a living time bomb. I try to

cherish

> each day as it comes. You talk of taking your paxil. For me it is

> lexapro. I highly recommend it!

>

> I have read your thoughts about your desire to continue to

support the

> colon cancer association when, as you say, the dust has settled.

I

> think that is wonderful and I know you can be of so much help in

any

> capacity like that....as a matter of fact, after died, it

was

> you who seemed to hold up this board so well. Thank you for

that. I

> know the newbies are so frightened as you and I were that first

June

> when we both signed on to this board. So much has happened. I

wish

> with all my heart that there had been another way that we would

have

> connected and not at a time of such shared misery, confusion and

down

> right terror.

>

> I know is waiting in heaven for the time that Phil is ready

to

> join him. This monster of a disease is so insidious. It seems to

> take the best people; good, decent people far too young to leave

us.

>

> May God bless Phil, you and your children. My prayers are with

you.

> I know your faith will see you through this. Say a prayer for me

too.

> Warm regards,

> Kit

>

>

>

>

>

>

>

>