Re: Need to pick some brains....

[Guest guest]

>>>We'll call Onc. at JHH and see what

he says...he's pretty upfront with us, too.

>>>

I really don't see how you could get much better than Hopkins:)

nancy

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[Guest guest]

In a message dated 8/28/2005 6:39:25 PM Eastern Standard Time,

brencolinmom@... writes:

I always hate to be negative but I must say that Cancer Centers of America

is not a first choice when fighting this disease. They offer nothing

different but instead package themselves as a full service clinic. The

truth is that

the best doctors are at the best medical centers and are not at CCof

America. When you are this shape, you need the best. You can always see a

nutritionist, dietician, accupuncturist, etc. outside of your regular

doctor. They

advertise and that is basically how they have become so well known. It

scares

me to see people drawn to them by their advertising. I am a lawyer (as is

my husband) and the worst lawyers in the world are those who advertise

things

like: " Have you taken Vioxx? If so you need to call XYZ lawyers " . You

know

what I mean. When it comes to the law, you are better off with someone

with

a nationally-known law firm who gradulated at the top of his class at

Stanford (or similar school) and who has experience in the type of law you

need.

It is the same for doctors. Use caution.

...

I am in total agreement with you!! Glenn's GI dr. told him to stay at JHH.

Guess we'll cross that bridge when we get to it...thanks for your input

(which seems to be the general consensus of everyone we've talked to about it.

Lots of hugs and prayers, Donelle

Caregiver to Glenn

[Guest guest]

Best of luck on Glenn's surgery and uneventful recovery. I will be thinking

of you. He is in good hands.

In a message dated 8/28/2005 6:39:25 PM Eastern Standard Time,

brencolinmom@... writes:

I always hate to be negative but I must say that Cancer Centers of America

is not a first choice when fighting this disease. They offer nothing

different but instead package themselves as a full service clinic. The

truth is that

the best doctors are at the best medical centers and are not at CCof

America. When you are this shape, you need the best. You can always see

a

nutritionist, dietician, accupuncturist, etc. outside of your regular

doctor. They

advertise and that is basically how they have become so well known. It

scares

me to see people drawn to them by their advertising. I am a lawyer (as is

my husband) and the worst lawyers in the world are those who advertise

things

like: " Have you taken Vioxx? If so you need to call XYZ lawyers " . You

know

what I mean. When it comes to the law, you are better off with someone

with

a nationally-known law firm who gradulated at the top of his class at

Stanford (or similar school) and who has experience in the type of law you

need.

It is the same for doctors. Use caution.

...

I am in total agreement with you!! Glenn's GI dr. told him to stay at JHH.

Guess we'll cross that bridge when we get to it...thanks for your input

(which seems to be the general consensus of everyone we've talked to about

it.

Lots of hugs and prayers, Donelle

Caregiver to Glenn

[Non-text portions of this message have been removed]

[Guest guest]

In a message dated 8/28/2005 9:22:42 PM Eastern Standard Time,

Grandmommyandme@... writes:

I am in total agreement with you!! Glenn's GI Dr. told him to stay at JHH.

Guess we'll cross that bridge when we get to it...thanks for your input

(Which seems to be the general consensus of everyone we've talked to about

it.

Lots of hugs and prayers, Donelle

Caregiver to Glenn

The only other advice I could offer is to at least ask him about Pittsburgh

if RFA becomes a possibility unless there is somewhere closer that could do it

as well.

Narice

[Guest guest]

In a message dated 8/28/2005 9:22:42 PM Eastern Standard Time,

Grandmommyandme@... writes:

I am in total agreement with you!! Glenn's GI Dr. told him to stay at JHH.

Guess we'll cross that bridge when we get to it...thanks for your input

(Which seems to be the general consensus of everyone we've talked to about

it.

Lots of hugs and prayers, Donelle

Caregiver to Glenn

The only other advice I could offer is to at least ask him about Pittsburgh

if RFA becomes a possibility unless there is somewhere closer that could do it

as well.

Narice

[Guest guest]

In a message dated 8/28/2005 10:45:17 PM Eastern Standard Time,

flipper759@... writes:

The only other advice I could offer is to at least ask him about Pittsburgh

if RFA becomes a possibility unless there is somewhere closer that could do

it

as well.

Narice

Thanks, Narice....is RFA the radiation?? For some reason, which totally

eludes me in my " fog " this morning, zapping was not an option for Glenn...

Lots of hugs and prayers, Donelle

Caregiver to Glenn

[Guest guest]

In a message dated 8/28/2005 10:45:17 PM Eastern Standard Time,

flipper759@... writes:

The only other advice I could offer is to at least ask him about Pittsburgh

if RFA becomes a possibility unless there is somewhere closer that could do

it

as well.

Narice

Thanks, Narice....is RFA the radiation?? For some reason, which totally

eludes me in my " fog " this morning, zapping was not an option for Glenn...

Lots of hugs and prayers, Donelle

Caregiver to Glenn

[Guest guest]

Right Radio Frequency Ablation. He wouldn't be eligible until they get the

varicosities controlled. But with that done and Glenn recovering you may want

to revisit it.

I would say Hepatic Pump but with Glenn's history it might not be advisable.

Still Pittsburgh could offer you some solutions to the liver mets you or

your oncologist hadn't thought of yet.

First things first lets get him through surgery and back to some sense of

normal.

I'm praying hard

HUGS

Narice

[Guest guest]

Right Radio Frequency Ablation. He wouldn't be eligible until they get the

varicosities controlled. But with that done and Glenn recovering you may want

to revisit it.

I would say Hepatic Pump but with Glenn's history it might not be advisable.

Still Pittsburgh could offer you some solutions to the liver mets you or

your oncologist hadn't thought of yet.

First things first lets get him through surgery and back to some sense of

normal.

I'm praying hard

HUGS

Narice

[Guest guest]

Oh gosh, Donnelle, I don't think you are being selfish at all. What does Glenn

think/want???

I often think of Jackie Kennedy in her battle; when she knew the drugs wouldn't

have a desired effect, she opted out and went home to see and be with loved

ones.

Of course, ultimately, it is Glenn's decision.

Praying for both of you.

Karima

Re: Need to pick some brains....

In a message dated 8/26/2005 2:11:30 AM Eastern Standard Time,

sftfemme@... writes:

I've always wondered about that place. Please let us know how it goes.

So far, , the feedback we are getting from everyone we've asked is not

real good...Glenn's GI Dr. (who is not associated with s Hopkins) told

Glenn that Cancer Centers of America " prays " on end-stage patients that are

at

their wits end...that's the exact words he used!!! He told Glenn that he

was at the #1 hospital in the world...with some of the best drs. in the world

and was better off staying there for any cancer treatment that might be

available after this surgery...

Several others have mentioned that they were pleased with the Center, but

not really any good results...nothing different than had they stayed where

they

were for additional treatment. We're grasping at straws now...but I'm

trying desparately to keep " my " head...and guide him as best I can. I'm

thinking,

since we almost know the end result since the liver is 70% tumor and failing

already, we should spend that time together....not him running all over the

country-side... am I being selfish?? Probably...but I just would need to

hear some better feedback about the center. We'll call Onc. at JHH and see

what

he says...he's pretty upfront with us, too.

Lots of hugs and prayers, Donelle

Caregiver to Glenn

[Guest guest]

Oh gosh, Donnelle, I don't think you are being selfish at all. What does Glenn

think/want???

I often think of Jackie Kennedy in her battle; when she knew the drugs wouldn't

have a desired effect, she opted out and went home to see and be with loved

ones.

Of course, ultimately, it is Glenn's decision.

Praying for both of you.

Karima

Re: Need to pick some brains....

In a message dated 8/26/2005 2:11:30 AM Eastern Standard Time,

sftfemme@... writes:

I've always wondered about that place. Please let us know how it goes.

So far, , the feedback we are getting from everyone we've asked is not

real good...Glenn's GI Dr. (who is not associated with s Hopkins) told

Glenn that Cancer Centers of America " prays " on end-stage patients that are

at

their wits end...that's the exact words he used!!! He told Glenn that he

was at the #1 hospital in the world...with some of the best drs. in the world

and was better off staying there for any cancer treatment that might be

available after this surgery...

Several others have mentioned that they were pleased with the Center, but

not really any good results...nothing different than had they stayed where

they

were for additional treatment. We're grasping at straws now...but I'm

trying desparately to keep " my " head...and guide him as best I can. I'm

thinking,

since we almost know the end result since the liver is 70% tumor and failing

already, we should spend that time together....not him running all over the

country-side... am I being selfish?? Probably...but I just would need to

hear some better feedback about the center. We'll call Onc. at JHH and see

what

he says...he's pretty upfront with us, too.

Lots of hugs and prayers, Donelle

Caregiver to Glenn