Re: Soaring CEA

[Guest guest]

Oh Sharon....I feel so badly for you. I have added you and your Mom to my

prayer list. Did they actually given her a time limit?? Tell Mom we need to

fight this darn disease, not let it get us!!! Is she in any pain??

Sharon, just hold on...take some deep breaths...and allow the relaxation and

power to come back into your body, so you can deal with this. I can only

imagine, but watching Mom suffer has got to be taking it's toll on you, as

well.

I'm sorry if you've already answered these questions previously. I just got

so far behind in the posts...I'm just trying to catch up a little!!!

Lots of hugs and prayers, Donelle

Caregiver to Glenn

Colon resection 6/03, open wound for 2 months, chemo for 8 months

Mets to Liver found 4/04, inoperable " at the moment "

Chemo infiltration to chest 8/04 with severe side effects including severe

pain and muscle damage (permanent??), unable to eat, colon shut down,

hospitalization w/morphine 8 days

Fluid build-up and draining on a regular weekly basis

Now on 5FU/Leu/Oxaliplatin/Avastin " cocktails " 46 hr. infusions

TRYING TO KICK BUTT with this darn disease!!!

[Guest guest]

In a message dated 1/1/2005 4:15:05 PM Eastern Standard Time,

tarcav23@... writes:

Mom says the doctor said she didn't have much time, but I was there

and did not hear him say that. I can't believe that I would not have

heard that, but maybe I just didn't want to.

She has diarrhea and nausea and says she has some pain, but the

doctor offered pain meds on Thursday, and she said she did not need

them yet. I think she has given up, which is her choice, but it is

hard to take.

Sharon....

Maybe Mom interpreted something the dr. said differently than you did. Call

the Dr. on Monday a.m. and talk with him. He should take time to talk with

you or get back to you and give you some answers. These drs. and the onc

nurses seem to be quite compassionate and more than willing to talk to the

caregivers and answer questions, etc.

Glenn and I sometimes interpret things the Onc Dr. or Nurse say in different

ways. I truly believe sometimes Glenn just doesn't listen... I try to

always go with Glenn to the Onc. visits (as well as chemo...not a fun place to

go,

but at least I'm a little company for him if he's awake) b/c I will listen

and ask questions. Glenn doesn't ask questions. I write everything down at

each visit and have a journal I take with me, b/c I can't remember half the

crap when I get home if I don't. Names of chemos, etc. etc.

And why is it....these patients don't want to take medication that will help

them feel better?? That doesn't compute in my mind...Glenn is the same way.

Unless I get the pill and hand it to him, he doesn't take it. I would not

want to have diarrhea or feel nauseous all the time...and I certainly

wouldn't want to feel pain all the time...bring on the meds I say!! I know he

must

get tired of taking medication, but it's just one of those things you have to

do to feel better with this disease. Thank God they now have these meds to

alleviate some of the pain and nausea, so people can eat and not waste away.

Hope you can talk with the Dr. on Monday to alleviate some of your

stress!!!

Lots of hugs and prayers, Donelle

Caregiver to Glenn

Colon resection 6/03, open wound for 2 months, chemo for 8 months

Mets to Liver found 4/04, inoperable " at the moment "

Chemo infiltration to chest 8/04 with severe side effects including severe

pain and muscle damage (permanent??), unable to eat, colon shut down,

hospitalization w/morphine 8 days

Fluid build-up and draining on a regular weekly basis

Now on 5FU/Leu/Oxaliplatin/Avastin " cocktails " 46 hr. infusions

TRYING TO KICK BUTT with this darn disease!!!

[Guest guest]

Donelle,

You have trouble enough of your own, but I appreciate the prayers and

your kindness.

Mom says the doctor said she didn't have much time, but I was there

and did not hear him say that. I can't believe that I would not have

heard that, but maybe I just didn't want to.

She has diarrhea and nausea and says she has some pain, but the

doctor offered pain meds on Thursday, and she said she did not need

them yet. I think she has given up, which is her choice, but it is

hard to take.

I will certainly keep you and Glenn in my prayers as well.

Sharon

> Oh Sharon....I feel so badly for you. I have added you and your

Mom to my

> prayer list. Did they actually given her a time limit?? Tell Mom

we need to

> fight this darn disease, not let it get us!!! Is she in any

pain??

>

> Sharon, just hold on...take some deep breaths...and allow the

relaxation and

> power to come back into your body, so you can deal with this. I

can only

> imagine, but watching Mom suffer has got to be taking it's toll on

you, as

> well.

>

> I'm sorry if you've already answered these questions previously.

I just got

> so far behind in the posts...I'm just trying to catch up a

little!!!

>

> Lots of hugs and prayers, Donelle

> Caregiver to Glenn

>

>

> Colon resection 6/03, open wound for 2 months, chemo for 8 months

> Mets to Liver found 4/04, inoperable " at the moment "

> Chemo infiltration to chest 8/04 with severe side effects

including severe

> pain and muscle damage (permanent??), unable to eat, colon shut

down,

> hospitalization w/morphine 8 days

> Fluid build-up and draining on a regular weekly basis

> Now on 5FU/Leu/Oxaliplatin/Avastin " cocktails " 46 hr. infusions

> TRYING TO KICK BUTT with this darn disease!!!

>

>

>

[Guest guest]

Sharon

Keeping you and your mom in my thoughts and prayers. Jolene

[Guest guest]

Jolene,

Thanks, and I will keep you in mine.

Sharon

> Sharon

> Keeping you and your mom in my thoughts and prayers. Jolene

>

>

>

[Guest guest]

>

> Friends,

>

> My mom's CEA has soared to 1,000 while she has been off of

> treatment. The oncologist wanted her back on Xeloda and Celebrex

> three weeks ago, but she thought it would just make her sick so

> didn't take it. He offered the other options, but she thinks it

> would only be worth a month or two. She is in a terrible state

> emotionally, and I am not much better.

>

> I think each of us would take the burden on ourselves if we could,

> but that is not to be.

>

> I will keep praying for you, and I ask your prayers for strength

for

> me and comfort for Mom.

>

> Sharon

Sharon, CEA levels are also elevated in inflammatory bowel disease,

heavy cigarette smoking, liver disease and chroni bronchitis.

[Guest guest]

Sharon,

Hope that the doctor is helping with feelings of depression - it can so

affect decisions at this time. Glad that you are here to talk - but hope that

you

have some other support there as well. It is important for you to get

support as well - to help stay strong and have a clearer head to help with the

decisions involving your mom. Just know that you and your mom are in a lot of

prayers.

Sheila

[Guest guest]

Sharon...

I have a terrible time getting Glenn to take any of the meds the dr.

prescribes. The pill for pain, one for nausea, one for fluid build-up, all of

which

he suffers everyday... he says he's not in " that much pain " ...or " not that

nauseous " , etc.

I can't get him to drink water, which would help flush the chemo through his

body, as well as help with the fluid build-up, etc. Sometimes I get so

frustrated, I actually get angry with him. Then feel guilty!!!

GRRRRRRR.....I

hate this disease!!! Donelle

Sheila,

The doctor prescribed anti-depressant medication months ago, but Mom

would not take it. I wish I could get her to take it but don't know

how.

I have other family members around, but my sister-in-law is the only

one who really understands. Poor woman; she just lost her brother to

a brain tumor three weeks ago!

I appreciate your concern and wish good things for you.

Sharon

[Guest guest]

Hmm...it's disheartening to hear how many of us have this built up resistance

to antidepressants (all of us - your mom is not alone in this area as many

here have written similar stories). You might try telling her that the

anti-depressant is as necessary as any other drug that they prescribe. It is

all part

of a whole body approach and without that integral part in some cases it just

makes recovery that much more difficult. You can tell her too that even the

chemo can cause additional feelings of depression - it wreaks havoc on the

system and it's tell tale sign is increased physical and mental depressions.

But

the chemo and the meds are necessary - tell her these things are her armor as

she battles this foe. A lot of cancer centers have social workers or staff

to help with counseling at their site or that can recommend outside assistance.

If she won't take the meds maybe she can at least talk to someone. The ones

counseling generally tend to be cancer suriviors themselves.

Good luck - you remain in my prayers.

Sheila

[Guest guest]

Sharon - hoping that Glenn realizes that the meds are best used as preventive

and even precautionary measures against the pain and nauseua...not as

effective after they set in. Tell him the less he feels any of these effects

the

better he will feel and the more he will move around, wanting to eat and drink

more. It's so easy to get slogged down in the effects that it's hard for

patients (me included) to remember that we don't have to feel like this..but it

takes a little time....and sometimes it can even be overnight improvement as I

recently experienced. Getting out to just do a short walk was a HUGE effort

for

awhile, till I got the right meds to make actually feel like doing anything.

Hoping the doc keeps working with you to get the right combo for him and that

he keeps trying. Stay strong.

Sheila

[Guest guest]

Sheila,

The doctor prescribed anti-depressant medication months ago, but Mom

would not take it. I wish I could get her to take it but don't know

how.

I have other family members around, but my sister-in-law is the only

one who really understands. Poor woman; she just lost her brother to

a brain tumor three weeks ago!

I appreciate your concern and wish good things for you.

Sharon

> Sharon,

> Hope that the doctor is helping with feelings of depression - it

can so

> affect decisions at this time. Glad that you are here to talk -

but hope that you

> have some other support there as well. It is important for you to

get

> support as well - to help stay strong and have a clearer head to

help with the

> decisions involving your mom. Just know that you and your mom are

in a lot of

> prayers.

>

> Sheila

>

>

>

[Guest guest]

Oh gals,

I hate to say it but that's such a man thing. Phil hates it when I ask if he

is ok etc. He hates being babied or feeling dependent.

his Dr. sometimes winks at me and tells him that I'm the boss but truthfully

I don't want the job! You really can't blame them for not wanting to fill the

day with DR.s and pills.

So at this point I've learned to back off and let Phil decide what is best

for him. If I disagree I'll make him call the Dr and ask.

Narice

[Guest guest]

In a message dated 1/3/2005 11:59:34 AM Eastern Standard Time,

msheila7@... writes:

hoping that Glenn realizes that the meds are best used as preventive

and even precautionary measures against the pain and nauseua...not as

effective after they set in. Tell him the less he feels any of these

effects the

better he will feel and the more he will move around, wanting to eat and

drink

more. It's so easy to get slogged down in the effects that it's hard for

patients (me included) to remember that we don't have to feel like this..but

it

takes a little time....and sometimes it can even be overnight improvement as

I

recently experienced. Getting out to just do a short walk was a HUGE

effort for

awhile, till I got the right meds to make actually feel like doing anything.

Hoping the doc keeps working with you to get the right combo for him and

that

he keeps trying. Stay strong.

Sheila

Sheila....thanks so much for this email...I forwarded it to Glenn. Maybe

coming from another patient, it will sink in somehow. We have an appt. with

Onc. on Jan. 10th and I want to talk to the Dr. before we go...and " rat " on

Glenn. Maybe if I tell the Dr. that he's not watching his blood sugar, not

taking meds, not moving around, etc. etc., the dr. can bring these things up

w/o

Glenn knowing I ratted. It's just so heartbreaking for me to see him...I

feel like he's not really " fighting " . Just feels so bad all the time, that he

just doesn't care anymore. Scares me!!

Thanks again,

Lots of hugs and prayers, Donelle

Caregiver to Glenn

Colon resection 6/03, open wound for 2 months, chemo for 8 months

Mets to Liver found 4/04, inoperable " at the moment "

Chemo infiltration to chest 8/04 with severe side effects including severe

pain and muscle damage (permanent??), unable to eat, colon shut down,

hospitalization w/morphine 8 days

Fluid build-up and draining on a regular weekly basis

Now on 5FU/Leu/Oxaliplatin/Avastin " cocktails " 46 hr. infusions

TRYING TO KICK BUTT with this darn disease!!!

[Guest guest]

Been there done that Donelle. Had same problem with my husband. He got very

resentful when I pushed the fluids etc. He never did like me telling him what he

had to do and he was not about to change because of his illness. I know had the

anger too. Told him one time that I just wish you would try to help yourself a

little bit. All I can say is grit your teeth and keep at it. If he is not

that nauseous now, tell him you will be later if you don't take the pill. Same

with the other stuff.. Be creative. Would he chew on ice chips or would that be

too cold? Wish I could be more help... but how about I give you a great big

hug, and say Hang in there Kiddo. (((((((((((((Donelle)))))))))))))))))

Cheers Jolene

[Guest guest]

Hi Narice!!

I understand and agree with what you are saying...but Glenn is not

functioning. He's not eating, not drinking, not taking meds, not even trying

to

control his blood sugar, nausea or pain....and hasn't worked since Sept. All

he

does is sleep and watch TV once in a while...some days more TV than sleep.

This is what's scaring me. I'm just glad he will go to chemo treatments!!!

But chemo can only do so much, if he doesn't try to help himself....am I

right?? Help me out here... Thanks, Donelle

In a message dated 1/3/2005 6:49:22 PM Eastern Standard Time,

flipper759@... writes:

Oh gals,

I hate to say it but that's such a man thing. Phil hates it when I ask if he

is ok etc. He hates being babied or feeling dependent.

his Dr. sometimes winks at me and tells him that I'm the boss but truthfully

I don't want the job! You really can't blame them for not wanting to fill

the

day with DR.s and pills.

So at this point I've learned to back off and let Phil decide what is best

for him. If I disagree I'll make him call the Dr and ask.

Narice

Lots of hugs and prayers, Donelle

Caregiver to Glenn

Colon resection 6/03, open wound for 2 months, chemo for 8 months

Mets to Liver found 4/04, inoperable " at the moment "

Chemo infiltration to chest 8/04 with severe side effects including severe

pain and muscle damage (permanent??), unable to eat, colon shut down,

hospitalization w/morphine 8 days

Fluid build-up and draining on a regular weekly basis

Now on 5FU/Leu/Oxaliplatin/Avastin " cocktails " 46 hr. infusions

TRYING TO KICK BUTT with this darn disease!!!

[Guest guest]

In a message dated 1/3/2005 4:53:51 PM Eastern Standard Time,

jehret@... writes:

Been there done that Donelle. Had same problem with my husband. He got very

resentful when I pushed the fluids etc. He never did like me telling him

what he had to do and he was not about to change because of his illness. I

know had the anger too. Told him one time that I just wish you would try to

help

yourself a little bit. All I can say is grit your teeth and keep at it.

If he is not that nauseous now, tell him you will be later if you don't take

the pill. Same with the other stuff.. Be creative. Would he chew on ice chips

or would that be too cold? Wish I could be more help... but how about I

give you a great big hug, and say Hang in there Kiddo.

(((((((((((((Donelle))))))))))))))))) Cheers Jolene

Hugs always help, Jolene...thanks!!! I'm hanging tough!!

He can't eat ice chips b/c of the oxaliplatin and the throat seizure type

effects it creates. Otherwise, I could make him snowballs or slurpies or

something. I did get some of that Crystal Light Lemonade and he's been

drinking

that today. Yippee!! He also ate a little home-made spaghetti for dinner.

He also went to the Post Office today!!! Things are looking up!!!

He has not lost any hair to speak of...and I'm hoping the same for you!!

I'll be thinking about you tomorrow...hope you get started!!

Lots of hugs and prayers, Donelle

Caregiver to Glenn

Colon resection 6/03, open wound for 2 months, chemo for 8 months

Mets to Liver found 4/04, inoperable " at the moment "

Chemo infiltration to chest 8/04 with severe side effects including severe

pain and muscle damage (permanent??), unable to eat, colon shut down,

hospitalization w/morphine 8 days

Fluid build-up and draining on a regular weekly basis

Now on 5FU/Leu/Oxaliplatin/Avastin " cocktails " 46 hr. infusions

TRYING TO KICK BUTT with this darn disease!!!

[Guest guest]

Donelle,

It is a really scarey place to be...on the " outside " and not being able to

get through to them. My adopted mom had colon cancer as well...and I was

between 14 and 17 and taking care of her. I remember well trying to get her to

eat,

and to do things. I had no concept at the time of the pain, tiredness and

the discomfort really, and it was hard to see her withdraw. I've done this

myself and seen others do it....but usually it can be turned around with the

right

meds and the time to feel better. Just physically feeling better seems to

improve the mindset so much.

I think that the others are right - sometimes it is a " man thing " (very

true!) but I think in this case it is a combination of depression and physical

symptoms. Any chance of getting him an ostomy visitor? or another cancer

survivor? this can help - in the home, just as encouragement that someone else

has

gone thru this...and lived to tell about it. Check out some organizations in

your area and see if they can do that if you feel it would help.

The truth too is that unfortunately a lot of the " battle " has to come from

within him. I think a lot of folks kinda know where they stand even before

something like cancer hits them. Or they think they know - and then find the

resolve and strength to keep going well beyond what they were capable of.

That's

me - especially having seen cancer - what? three times in the family. I

intend to be here for a long time. There's just way too much to see and do!!

Wishing you strength and peace of mind,

Sheila

[Guest guest]

I've found that the suggestion of EmergenC was a great one! It has really

helped me with strength and energy. I think it had a lot to do with turning

around the weight loss I was going thru as well.

Sheila

[Guest guest]

Guess it is a guy thing... I think you have the right remedy there. Back off

and let him decide.

Sounds like a good plan. Jolene

Re: Re: Soaring CEA

Oh gals,

I hate to say it but that's such a man thing. Phil hates it when I ask if he

is ok etc. He hates being babied or feeling dependent.

his Dr. sometimes winks at me and tells him that I'm the boss but truthfully

I don't want the job! You really can't blame them for not wanting to fill the

day with DR.s and pills.

So at this point I've learned to back off and let Phil decide what is best

for him. If I disagree I'll make him call the Dr and ask.

Narice

[Guest guest]

Donelle

You need to talk to the docs about what he is " not " doing. My husband did this

as well, did nothing but watch those House and Senate channels all day.. Golly

I learned to hate them. I had to have my hubby put in hospital a couple times

cause everything was low, low, low and he acted very strange. One time he fell

and hurt his hip... Yes it is very scary.. Talk to the docs about it.... Jolene

Re: Re: Soaring CEA

Hi Narice!!

I understand and agree with what you are saying...but Glenn is not

functioning. He's not eating, not drinking, not taking meds, not even trying

to

control his blood sugar, nausea or pain....and hasn't worked since Sept. All

he

does is sleep and watch TV once in a while...some days more TV than sleep.

This is what's scaring me. I'm just glad he will go to chemo treatments!!!

But chemo can only do so much, if he doesn't try to help himself....am I

right?? Help me out here... Thanks, Donelle

In a message dated 1/3/2005 6:49:22 PM Eastern Standard Time,

flipper759@... writes:

Oh gals,

I hate to say it but that's such a man thing. Phil hates it when I ask if he

is ok etc. He hates being babied or feeling dependent.

his Dr. sometimes winks at me and tells him that I'm the boss but truthfully

I don't want the job! You really can't blame them for not wanting to fill

the

day with DR.s and pills.

So at this point I've learned to back off and let Phil decide what is best

for him. If I disagree I'll make him call the Dr and ask.

Narice

Lots of hugs and prayers, Donelle

Caregiver to Glenn

Colon resection 6/03, open wound for 2 months, chemo for 8 months

Mets to Liver found 4/04, inoperable " at the moment "

Chemo infiltration to chest 8/04 with severe side effects including severe

pain and muscle damage (permanent??), unable to eat, colon shut down,

hospitalization w/morphine 8 days

Fluid build-up and draining on a regular weekly basis

Now on 5FU/Leu/Oxaliplatin/Avastin " cocktails " 46 hr. infusions

TRYING TO KICK BUTT with this darn disease!!!

[Guest guest]

Thanks Sheila...

Actually I forwarded a couple messages to Glenn yesterday and he actually

read them...he said " the people sound so sincere " ....and " some of them are so

much worse off than he " ...some very positive things, for a change!!

He actually ate last night...and his whole demeanor was different!!! Keep

sending info and positive thoughts everyone... I did send his name in to

" Chemo Angels " . I won't know if he's accepted for a week or so. I never

thought

of getting someone locally....will ask Dr. on Jan. l0th...another thing on

my list of things to do!!!

Thanks to all who have responded...been a great help!!! To me and to Glenn

(I think) Hugs, Donelle

In a message dated 1/3/2005 11:59:43 PM Eastern Standard Time,

msheila7@... writes:

Donelle,

It is a really scarey place to be...on the " outside " and not being able to

get through to them. My adopted mom had colon cancer as well...and I was

between 14 and 17 and taking care of her. I remember well trying to get her

to eat,

and to do things. I had no concept at the time of the pain, tiredness and

the discomfort really, and it was hard to see her withdraw. I've done this

myself and seen others do it....but usually it can be turned around with the

right

meds and the time to feel better. Just physically feeling better seems to

improve the mindset so much.

I think that the others are right - sometimes it is a " man thing " (very

true!) but I think in this case it is a combination of depression and

physical

symptoms. Any chance of getting him an ostomy visitor? or another cancer

survivor? this can help - in the home, just as encouragement that someone

else has

gone thru this...and lived to tell about it. Check out some organizations

in

your area and see if they can do that if you feel it would help.

The truth too is that unfortunately a lot of the " battle " has to come from

within him. I think a lot of folks kinda know where they stand even before

something like cancer hits them. Or they think they know - and then find

the

resolve and strength to keep going well beyond what they were capable of.

That's

me - especially having seen cancer - what? three times in the family. I

intend to be here for a long time. There's just way too much to see and do!!

Wishing you strength and peace of mind,

Sheila

Lots of hugs and prayers, Donelle

Caregiver to Glenn

Colon resection 6/03, open wound for 2 months, chemo for 8 months

Mets to Liver found 4/04, inoperable " at the moment "

Chemo infiltration to chest 8/04 with severe side effects including severe

pain and muscle damage (permanent??), unable to eat, colon shut down,

hospitalization w/morphine 8 days

Fluid build-up and draining on a regular weekly basis

Now on 5FU/Leu/Oxaliplatin/Avastin " cocktails " 46 hr. infusions

TRYING TO KICK BUTT with this darn disease!!!

[Guest guest]

Donelle,

Glad to hear that things are looking better. I haven't heard of chemo angels

before but will look up info on them - on my list of things to do!

Sheila

[Guest guest]

In a message dated 1/4/2005 6:31:44 AM Eastern Standard Time,

msheila7@... writes:

Donelle,

Glad to hear that things are looking better. I haven't heard of chemo

angels

before but will look up info on them - on my list of things to do!

Sheila

_www.chemoangels.com_ (http://www.chemoangels.com)

I want to join as an angel...soon as things calm down here!!!

Lots of hugs and prayers, Donelle

Caregiver to Glenn

Colon resection 6/03, open wound for 2 months, chemo for 8 months

Mets to Liver found 4/04, inoperable " at the moment "

Chemo infiltration to chest 8/04 with severe side effects including severe

pain and muscle damage (permanent??), unable to eat, colon shut down,

hospitalization w/morphine 8 days

Fluid build-up and draining on a regular weekly basis

Now on 5FU/Leu/Oxaliplatin/Avastin " cocktails " 46 hr. infusions

TRYING TO KICK BUTT with this darn disease!!!

[Guest guest]

I see, ok then you have to take charge and call the Dr. Tell him exactly what

you have told us. The Dr. should then meet with him to try and straighten

this out. Also you might ask if there is a patient who would be willing to talk

to him. What I'd go for is someone with the same initial diagnosis who is doing

well today. If he'll read this board he will get some of that but there is

NOTHING like a face to face meeting with another cancer patient to give him a

little hope.

Hang in there

Narice

[Guest guest]

In a message dated 1/4/2005 12:00:08 AM Eastern Standard Time,

msheila7@... writes:

I've found that the suggestion of EmergenC was a great one! It has really

helped me with strength and energy. I think it had a lot to do with turning

around the weight loss I was going thru as well.

Sheila

I read the posts about that a while ago...but never found it where I shop...

Where do you find it?? Is it in a bottle or can or pill form or ???

Lots of hugs and prayers, Donelle

Caregiver to Glenn

Colon resection 6/03, open wound for 2 months, chemo for 8 months

Mets to Liver found 4/04, inoperable " at the moment "

Chemo infiltration to chest 8/04 with severe side effects including severe

pain and muscle damage (permanent??), unable to eat, colon shut down,

hospitalization w/morphine 8 days

Fluid build-up and draining on a regular weekly basis

Now on 5FU/Leu/Oxaliplatin/Avastin " cocktails " 46 hr. infusions

TRYING TO KICK BUTT with this darn disease!!!