Re: Husband's Update -- What a ride

May 10, 2003

Hi Donna,

Sorry about the nasty " talk " ...was kinda thinking about that in some

of my previous posts, concluded maybe " don't ask don't tell " policy

is best if this sort of thing is too upsetting. But, it sounds like

opinion was volunteered by the oncologist without prompting?

<<not most of the time with a few exceptions .......not

occasionally ...... it is always ...... 100% ......fatal>>

Which sounds a bit harsh! I guess there are exceptions to everything

(even if not common) so I'm not sure why so extreme negative. After

all, if they can shrink 14 cm mets in some patients, isn't anything

POSSIBLE?

http://www.healthtalk.com/coloncancer/111902/01.html

<<MDA...I called them myself today and after taking the time to

explain what our objective is (something I doubt the Doc bothered to

do) they opened a referral and told me what information and records

I needed to fax to them Monday just to verify his condition and then

they'd call me with an appointment for about 3 weeks from now>>

Yes...this is a good move. I think very important to get

a " therasphere vs HAI " viewpoint from doctors familiar with both, to

figure out which is best for your husband's case. My gut feeling is

that the radiation would probably have a better chance at further

tumor shrinkage than chemo, although if that shrinkage is still not

enough for resection it may not give more survival time. Please let

us know what they say at the appt!

<<If everything on his CT showed some shrinkage and NO

growth .....why would his CEA be up? Makes me wonder if there could

be a small tumor somewhere else ........ this #$@% Doc hasn't done

ANY test to check for that yet .......won't even order a PET!>>

But its not up much, and hopefully the small increase doesn't mean

anything. However, I can tell you the reason they didn't order a

PET....its because, what would they do differently at this point if

the PET actually did show something else? They generally will not

operate on extra-hepatic disease anyway, the only thing a PET could

change now is they would refuse to put in the HAI pump on discovery

of new extrahepatic mets. So strangely enough, he is probably better

off WITHOUT the PET under these circumstances...

Best Wishes,

May 10, 2003

> OK ...... here's where the plot turns. Since we were asking him if

> he thought that would be OK and if we could go ahead and get an

> appointment at MD for a second opinion as to which

procedure

> might be best (Pump or Spheres) ....he replied as

----- I think they call it a ride, because it is as if someone pulled

the rug out from under our feet.

Guess there is a fine line between an oblgation to inform - (because

no one is going to be blueprinted results like all others)

http://blueprint.bluecrossmn.com/topic/armstrongdr

Yet not keeping up with education of treatment (which is what

happened in our case, from our first onc)

http://www.partnersagainstpain.com/html/profed/profed.htm?

pg=7453 & section=profed is reckless, so no information could also be

reckless. But how far should they go if it proves false, and only

adds to the " progression " of the illness, by taking away all hope??

There is a need to reduce it to paper, even, so the idea of being

a " team " happens. Hummm, trail and error shouldn't be the way to go.

http://www.voicesinthenight.com/newsletter/column.htm

And kicking oneself by guilt because it could have been prevented,

well, we know less then some.

http://www.cancersource.com/NewsFeatures/InspirationalStories/detail.c

fm?DiseaseID=1 & ContentID=26793

But, let's not let them take that hope away while we fight

http://www.cancersource.com/NewsFeatures/InspirationalStories/detail.c

fm?DiseaseID=1 & ContentID=26862 to live the best days yet we have, as

we can. It goes from dx, to quality of life, then end of life issues,

in many cases, and back perhaps, depending on THAT PERSON - that is

why it is a ride.

Hugs, Betty B.

other insp/stories

http://www.cancersource.com/NewsFeatures/InspirationalStories/index.cf

m?DiseaseID=1

May 10, 2003

Feeling that don't ask, don't tell might be wrong too - not to offer

information (or omit) might be the same as a lie. Lying is the worse,

but they could frame it with, " The normal thing I see in these

cases... " so that at least the person would know what the future

MIGHT hold. But too, I think that is for the family who is content to

just go along with the ride, not to get other's involved for better

odds, more options and updated issues.

Some of these doctors are so busy just making a living - that they

are not up-keeping with all the currant things in their field.

So now you wait a bit more, monday will come fast. You are not only

an informed customer of your doc, you might just be a bit

antagonistic and try to fight what he might offer?? Hummm, think

meeting you for him must have been a good thing too. Trust you will

listen and then jump in, really hard to do when you know that life

depends on it and trail and error might not be the best way to hit on

this. HOWEVER< we know that is what they are doing in many of the

instances anyway!!

Best possible choices to you, as Always, Betty B.

May 10, 2003

Feeling that don't ask, don't tell might be wrong too - not to offer

information (or omit) might be the same as a lie. Lying is the worse,

but they could frame it with, " The normal thing I see in these

cases... " so that at least the person would know what the future

MIGHT hold. But too, I think that is for the family who is content to

just go along with the ride, not to get other's involved for better

odds, more options and updated issues.

Some of these doctors are so busy just making a living - that they

are not up-keeping with all the currant things in their field.

So now you wait a bit more, monday will come fast. You are not only

an informed customer of your doc, you might just be a bit

antagonistic and try to fight what he might offer?? Hummm, think

meeting you for him must have been a good thing too. Trust you will

listen and then jump in, really hard to do when you know that life

depends on it and trail and error might not be the best way to hit on

this. HOWEVER< we know that is what they are doing in many of the

instances anyway!!

Best possible choices to you, as Always, Betty B.

May 11, 2003

erica <erica259@y...> I can't fault him for being human right?

----Exactally, maybe that doctor doesn't see things the same as the

next doctor, and maybe that other doctor sees more negative, so

therefore he is the same.

Betty B. " <a-team@s...>

---This is to ,,,,,,, (not meaning fighting what they offer is

bad, just that this doctor better be able to reduce it to writing to

prove what he offers to you, as we know you aren't going to " yes sir "

him like over 90% of his patients do for sure)

> So now you wait a bit more, monday will come fast. You are not only

> an informed customer of your doc, you might just be a bit

> antagonistic and try to fight what he might offer?? Hummm, think

> meeting you for him must have been a good thing too. Trust you will

> listen and then jump in, really hard to do when you know that life

> depends on it and trail and error might not be the best way to hit

on

> this. HOWEVER< we know that is what they are doing in many of the

> instances anyway!!

> Best possible choices to you, as Always, Betty B.

>

May 11, 2003

> But, it sounds like

> opinion was volunteered by the oncologist without prompting?

******** Yes ....we never asked him anything about what he thought

Rick's prognosis was. You know, on one hand I actually think I

understand what he was trying to get across to Rick ..... I just

think he went WAY overboard in the way he put it. He has mentioned

before that his patients tend to hear or read just the " good parts "

and not the whole story necessarily. Up to now, he had really

handled Rick with kid gloves ...... but now that we are trying to

make good decisions for ourselves, I think he wanted to make SURE

that Rick understood we are (at least in his opinion) dealing with

palliative treatment decisions and not curative. I do agree that we

have to consider that in our decisions ..... I just think it wouldn't

hurt for him to leave him with some shred of hope. Because as we all

know ....... anything is possible, even if not strongly probable.

And state of mind has everything to do with the fight!!

> Yes...this is a good move. I think very important to get

a " therasphere vs HAI " viewpoint from doctors familiar with both, to

figure out which is best for your husband's case. My gut feeling is

that the radiation would probably have a better chance at further

tumor shrinkage than chemo, although if that shrinkage is still not

enough for resection it may not give more survival time. Please let

us know what they say at the appt!

******** My husband was very happy that I was able to open up a

referral with MDA ..... the Oncologist is supposed to be trying to

get him into Vandy (that's the last assignment I gave him

Friday ...before I reached MDA) Won't hurt to have choices ....in

case one doesn't accept us. Now I have to get to work finding out

what hurdles we must jump with our insurance company. Good thing I

have 12 years in the employee benefits realm (insurance agent). I

will keep everyone posted. We're actually more interested in the

Therasperes too. Just seems less invasive ......just wondering if

they feel he has just as good a chance of getting benefit from that.

If so ...... I think we'll go that route first. We also want to find

out if doing that will remove future ability to try HAI pump. I know

it's all a grab bag ........ so we at least want to be able to make

an INFORMED CHOICE!!

> They generally will not operate on extra-hepatic disease anyway,

the only thing a PET could change now is they would refuse to put in

the HAI pump on discovery of new extrahepatic mets. So strangely

enough, he is probably better off WITHOUT the PET under these

circumstances...

********* The Oncologist believes (wherever we go) they will want to

run some tests to rule out extrahepatic disease first anyway. I'm

sure he's probably right about that. We'll cross that bridge when we

get there ......... I won't BORROW any more trouble today! LoL ;-)

Last thing I'll share ...... and I'll warn you that my husband is a

very strong natured and " colorful " character with a warped sense of

humor .........but this is his latest retort to the harsh news from

the Doc: " Screw him ......... by God I'm not going to accept

that .......I don't want to die and I'm not going to just roll over

in the floor and lick my nuts like some wounded dog. I'm going to

fight this with everything I have! " It's not that he's in denial of

the possibility ...... he just refuses to give up and I agree with

him 100%!! He has begun to feel a little worse after chemo each time

(for about 16 hours or so).......but he came home and mowed right

after chemo the other day .......he says he feels like curling up in

a corner but he refuses to give in to that ........ he feels that he

would be losing to " it " if he does that .....so he bows up and goes

on with his normal stuff ....... even if he does look " green " . He

absolutely amazes me and I although I don't know how he does it .....

I admire him for laying back his ears and staring it down! Gotta

love his spirit!

Kindest Regards to all!

Donna S.

May 11, 2003

<<just think he went WAY overboard in the way he put it>>

I agree...not sure what the point of that was.

Interestingly, did you see on the SIRtex site that you can do BOTH

HAI and SIR sphere at the same time?

[snip]

The fact that SIR-Spheres® plus FUDR Hepatic Artery Chemotherapy

showed an improvement over and above FUDR Hepatic Artery Chemotherapy

only is significant.

http://www.sirtex.com/?p=57

Best,

May 12, 2003

Wow, thanks ! I missed that important piece of info somehow.

I've printed that and will make it part of my " arsenal " .

Appreciative, as always!

Donna S.

>

> <<just think he went WAY overboard in the way he put it>>

>

> I agree...not sure what the point of that was.

>

> Interestingly, did you see on the SIRtex site that you can do BOTH

> HAI and SIR sphere at the same time?

>

> [snip]

> The fact that SIR-Spheres® plus FUDR Hepatic Artery Chemotherapy

> showed an improvement over and above FUDR Hepatic Artery

Chemotherapy

> only is significant.

>

> http://www.sirtex.com/?p=57

>

> Best,

>

May 12, 2003

From person that has an HAI pump-I wouldnt let just anybody insert

the thing. There is associated risk with toxicity etc. I certainley

dont think there would be any harm with multiple opinions.

With one warning-the doc was right that a major cancer center wont

use the pump if they do find extrahepatice disease. I have been

looking for a doc to keep the thing filled with FUDR for about 1 1/2

years now. All resist because of growth on the lungs.

Best of luck in your second opinion. Mark

> Wow, I don't even know where to begin. We met with the Oncologist

> Wednesday .....went into it knowing he was leveling out on the CPT-

> 11/5FU/LV treatment from last CEA. The CT confirmed

that ....stating

> very slight shrinkage in a few tumors/lesions ...no disease

> progression seen. Yeah!! Doc said since it's leveling we should

go

> ahead and have the HAI Pump put in .... and we'll continue systemic

> chemo as well. Our local Surgeon suggested OK City or Baylor,

> because he doesn't have enough experience placing those

> another " Yeah " ....because we felt the same and weren't going

> to let him) We expressed the desire to wait until the summer is

over

> AS LONG AS he could continue to keep the tumors in remission with

> chemo. We just aren't ready to potentially give up his excellent

> quality of life.

>

> OK ...... here's where the plot turns. Since we were asking him if

> he thought that would be OK and if we could go ahead and get an

> appointment at MD for a second opinion as to which

procedure

> might be best (Pump or Spheres) ....he replied as

> follows: " OK ...since you are asking me.....I'm going to give you

> some answers, and as I've always told you, ...they may not be what

> you want to hear. I can send you to a surgeon and TELL him to put

> that pump in and basically we aren't asking his opinion ..... we're

> just hiring him to do a procedure. When I send you to a Cancer

> Center like MDA, you are being referred to an Oncologist and ASKING

> for a second opinion. They may not be willing to do anything for

> you....you need to be prepared for that. " And then he dropped this

> VERY LARGE BOMB: " You need to understand this Rick .....the

disease

> you have is 100% fatal .....not 75% ......not most of the time with

a

> few exceptions .......not occasionally ...... it is always ......

> 100% ......fatal. " (The dots were put in to show you where he

paused

> for extra emphasis) Nice guy huh??!! He then went on to explain

> that we're merely trying to find ways to prolong his life and

retain

> the quality for as long as possible. He said he should have maybe

6

> to 12 months of " good time " left ......whatever that means. I

assume

> he means time that he could be feeling well. Anyway ...... I don't

> have to tell you what my husband thought of his tactics of

> communication! This knocked the wind out of his sails ......he's

> just now kind of recovering from that mental blow. Of course I've

> talked with him at length since then about the options out there.

>

> One more interesting kicker ........ I called today to find out his

> CEA (which has gone from 8.5 to 12 since last month) and the nurse

> said they talked with MDA and they said they " don't do second

> opinions " !! PLEASE!!!! I called them myself today and after

taking

> the time to explain what our objective is (something I doubt the

Doc

> bothered to do) they opened a referral and told me what information

> and records I needed to fax to them Monday just to verify his

> condition and then they'd call me with an appointment for about 3

> weeks from now. Damn these doctors .......... do we have to do

> everything for them?????? Did they completely skip " Communication

> Classes " during their many years of schooling? Aaaaaagh!!! How

> frustrating.

>

> Ok ....I know this was a long one ....so just one " "

question:

> If everything on his CT showed some shrinkage and NO

growth .....why

> would his CEA be up? Makes me wonder if there could be a small

tumor

> somewhere else ........ this #$@% Doc hasn't done ANY test to check

> for that yet .......won't even order a PET! OK ....I'll calm down

> now and get back to the goal at hand ..... getting better treatment!

>

> Thanks,

> Donna Sisco

May 12, 2003