Re: CEA - another ? Liz

[Guest guest]

Me again, Liz....when Galen had the hernia at the incision, what kind of

pain did he describe?? Glenn has had pain in lower abdomen and they can't seem

to find anything, but now I'm wondering if he should have another colonoscopy

or scan to see if any kind of hernia...thanks for your time...

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; one tumor too close to artery and vein

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

11/09/04 on 5FU/Leu/Oxaliplatin/Avastin " cocktails " 46 hr. infusions

TRYING TO KICK BUTT with this darn disease!!!

[Guest guest]

Thanks Liz, for the response! We spent the day at the hospital ...7 hrs.

Glenn received his 4th Folfox and 2nd Avastin. Was o.k. for a couple hours

and about 8:30 tonite, he went to bed saying he felt " like he was hit by a mack

truck " . Poor guy!! Well no wonder with a body pumped full of poison!!

But it seems to be " working " ...so we aren't stopping!!!

They are putting him on Ritalin...to give him a " little energy boost " and

act as an anti-depressant. (My son, when a baby was on Ritalin b/c he was so

hyper, he wouldn't nap or sleep at night...but it works differently in adults,

so they tell me). He's been a lot better mentally since Monday when we got

the news that one of the tumors had shrunk 30% and the others are stable with

no new ones. He worked at least 4 days a week thru his first regimen of

chemo after the surgery, but hasn't worked since the chemo infiltration in

August.

He's just got himself in such a weakened condition, I can't see how he'll

get back to work any time soon. He's talking about trying half days, but when

he showers, he's " worn out " physically to the point, he needs to lie down

for a few minutes before he dresses. Maybe the Ritalin will help boost him up

a little...if he does a little bit of something each day, he can build his

muscle mass back up hopefully. He did gain 4 lbs. instead of losing...so

that's a plus, as well.

Is Galen in hospital now?? We'll be praying for both of you and sending

positive thoughts...take care of yourself, Liz.

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; one tumor too close to artery and vein

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

11/09/04 on 5FU/Leu/Oxaliplatin/Avastin " cocktails " 46 hr. infusions

TRYING TO KICK BUTT with this darn disease!!!

In a message dated 1/14/2005 9:30:22 PM Eastern Standard Time,

gill4636@... writes:

Hi Donelle

It does seem like we are on same path!

Just got home from the hosp spent the night over there.

Galen had his hernias around the waist area and little higher, yes he

complained of hurting and he would have me feel his stomach I

couldn't tell anything than they just started getting larger popping

out like golf ball.You could really see them bulging out. When he

would lie down they go back down & u couldn't see them, which the dr

said they normally do.

The Onc really didn't want him to go off Avastin to have it done and

all of the other things that could happen I guess. Anyway when Galen

went for his colonscope he asked the surgeon about them, cuz he said

they just hurt too much, the surgeon said lets do them same time. So

that is what they did and it all worked out OK. I was little leary

but it worked!

Galen took the oxi/leu/5fu for 6 months -Avastin was added during the

4 th month he than continued on Avasin after the folfox stopped.

Total of 11 months Avastin. He is hoping to get back on it in the

next couple of weeks, have to talk to Onc and see now. His tumor on

liver has remained stable!! Got along fine with the Avastin.

Galen's tumor did shrink little bit in beginning and Avastin has been

keeping it stable we believe.

Now we ran into this prob with bile duct, but all seems to be going

to be ok there now after getting scared over this! This Gastrologist

said in fact he thinks the tumor has been dying off or some of it has

cuz that is what caused the bile duct to close up and he said if it

does it again he can still go back in and just do it again. We will

see in a week or 2 on that.

Just hang in there,sometimes I feel like we are hanging there like a

thread but than he bounces back again!!

Best to you and Glenn

Liz

Wife of Galen stage 4

[Guest guest]

In a message dated 1/14/2005 10:56:30 PM Eastern Standard Time,

jasonsmom285@... writes:

Donelle, Ritalin can decrease appetite alot, at least in kids, keep that in

mind, or check with the doc. Hope it helps Glenn. Good luck! ~~~Dianna (mom,

84, has rectal cancer)

OMIGOD...Thanks, Dianna...I will check with Dr. He's just started eating a

little on most days...since Oct. 5th, he's lost 40 lbs. Maybe I'll take

them....just kidding!

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; one tumor too close to artery and vein

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

11/09/04 on 5FU/Leu/Oxaliplatin/Avastin " cocktails " 46 hr. infusions

TRYING TO KICK BUTT with this darn disease!!!

[Guest guest]

Hi Donelle

It does seem like we are on same path!

Just got home from the hosp spent the night over there.

Galen had his hernias around the waist area and little higher, yes he

complained of hurting and he would have me feel his stomach I

couldn't tell anything than they just started getting larger popping

out like golf ball.You could really see them bulging out. When he

would lie down they go back down & u couldn't see them, which the dr

said they normally do.

The Onc really didn't want him to go off Avastin to have it done and

all of the other things that could happen I guess. Anyway when Galen

went for his colonscope he asked the surgeon about them, cuz he said

they just hurt too much, the surgeon said lets do them same time. So

that is what they did and it all worked out OK. I was little leary

but it worked!

Galen took the oxi/leu/5fu for 6 months -Avastin was added during the

4 th month he than continued on Avasin after the folfox stopped.

Total of 11 months Avastin. He is hoping to get back on it in the

next couple of weeks, have to talk to Onc and see now. His tumor on

liver has remained stable!! Got along fine with the Avastin.

Galen's tumor did shrink little bit in beginning and Avastin has been

keeping it stable we believe.

Now we ran into this prob with bile duct, but all seems to be going

to be ok there now after getting scared over this! This Gastrologist

said in fact he thinks the tumor has been dying off or some of it has

cuz that is what caused the bile duct to close up and he said if it

does it again he can still go back in and just do it again. We will

see in a week or 2 on that.

Just hang in there,sometimes I feel like we are hanging there like a

thread but than he bounces back again!!

Best to you and Glenn

Liz

Wife of Galen stage 4

> Me again, Liz....when Galen had the hernia at the incision, what

kind of

> pain did he describe?? Glenn has had pain in lower abdomen and

they can't seem

> to find anything, but now I'm wondering if he should have another

colonoscopy

> or scan to see if any kind of hernia...thanks for your time...

>

> 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; one tumor too close to

artery and vein

> 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

> 11/09/04 on 5FU/Leu/Oxaliplatin/Avastin " cocktails " 46 hr.

infusions

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

>

>

>

[Guest guest]

The hernia surgery should be able to be done less invasively via laproscopic

surgery. I am not sure how this would effect chemo,but I would ask about it.

Narice

[Guest guest]

Donelle:

Glad to hear that he's getting a little energy back. It takes time. I can

remember being wiped out with just the littlest movement as well back then.

It'll take some time to get the strength back...walking helps a lot with that.

I've only just started back half days as well. It's getting easier at least

and it helps keep me occupied from being in the house and dwelling on things.

Hope he continues to improve and feels better soon.

Sheila

[Guest guest]

In a message dated 1/16/2005 3:13:13 PM Eastern Standard Time,

gill4636@... writes:

Now he is raring to go again and keeps saying he wants back on the

chemo since got these other things under control. Spring is coming &

wants to get going to enjoy it!

Isn't it wonderful that they can get these darn tumors to shrink some

and then keep them stable.

Hopefully Glenn will get to feeling much better after these Folfox

treatments!

Will be praying for you & Glenn

Liz

Wife of Galen stg4

Hi Liz...

Tell Galen, spring coming is what keeps me going too!!!! Every year!!! LOL

Hate winter and the doldrums that go along with it...I have SAD (seasonal

affective disorder) I NEED sunshine to my brain to function at topspeed!!!

Glenn is sleeping a lot this wkn after his Friday treatment (thru today).

He always is so glad to get rid of that mini-IV on Sundays!!! He counts the

hours...LOL It's just inconvenient, I guess. Not uncomfortable or even in

the way...for me, it would be just the knowledge I'm being pumped full of

chemo!!! But, we have to keep thinking that's a good thing!!! If his body

couldn't tolerate it, then where would we be??

I'm hoping Glenn is feeling better by Thurs. I have plane ticket to FL to

see my first great grandchild...only going Thurs. night to Sat. afternoon, but

only if Glenn is awake and functioning...eating, drinking, etc. My 21 yr.

old granddaughter (I was a very young grandmother...LOL) just had a baby girl

on Wed., the day after my birthday.... 7 lbs. 1 oz., 18 inches...both doing

very well. I've got pics on the computer, but not the same as holding,

smelling, kissing, etc. the real product!!

What kind of chemo treatment will Galen go on now that the bile duct thingy

is corrected?? Hang in there, Liz...sounds like you are doing well!!! Stay

positive and keep sending me positive thoughts....thanks,

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; one tumor too close to artery and vein

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

11/09/04 on 5FU/Leu/Oxaliplatin/Avastin " cocktails " 46 hr. infusions

TRYING TO KICK BUTT with this darn disease!!!

[Guest guest]

Donelle:

Congrats on the newest addition to your family and on your birthday!!

Sheila

[Guest guest]

In a message dated 1/17/2005 12:50:41 AM Eastern Standard Time,

msheila7@... writes:

Donelle:

Congrats on the newest addition to your family and on your birthday!!

Sheila

Thanks, Sheila!!! Can't wait to see little " Shelbie " .

Lots of hugs and prayers, Donelle

Caregiver to Glenn