Re: Update not good :o(

November 23, 2004

My husband's prognosis was similar though it was not in his bloodstream.

Truthfully we thought 6 months was a generous estimate based on how he felt in

June 2003 but here we are nearly 18 months later and while we have our setbacks

at times he looks and feels well.

My advice is pray like you've never prayed before and man the battlestations

full speed ahead.

That no cure thing will have you going at times but all you can do is take

every day as a gift and live it to the fullest.

Use us for your shoulder to cry on.

You just never know what God has up his sleeve so don't give up! My husband

and I have had some of the best talks and times these last 18 months. You'll

gain your strength from her from God and from the folks on this board. I know

you don't feel it now but you really CAN do this.

I just wish you didn't have to.

If you ever need to talk I'm here

God bless

Narice

flipper759@...

" As long as I know the WHO

I can bear any HOW

even though I don't know WHY "

(Commentary on Job from Dialogue in Despair)

November 23, 2004

Jenn,

This is the worst part of it I think. Hearing the news, dealing with the

shock and then figuring out how to deal with it all. There are so many choices,

doctors and all to deal with.

After this initial period is over, and they proceed with treatments

(hopefully) then things will settle down into some kind of routine for you both.

It

will still be tough, but having something to do about helps a lot. You are

human - and certainly what you feel is not unsual. Be sure to make sometime for

yourself in all this mayhem. It will help keep your sanity and spirits. Ask

for help from others too...it comes in the most unexpected places and ways!

Prayers and best wishes to you both.

Sheila

November 23, 2004

Jenn,

Don't give up hope. Let me offer a couple of things.

I had/have a similar prognosis, with at least six spots on my

liver and 15/18 lymph nodes positive. Will I survive? Probably

not, but I went in with an attitude that I would, and I honestly

think it bought me a heck of a lot of time; and I feel great now to

boot. Other people do survive. I was going to be the guy whose

chemo got rid of enough liver lesions to allow a curative surgery.

I didn't happen to me, but I know for a fact that it does happen.

You have to attack this thing at the beginning thinking that a cure

will happen; the doctor said " 0 " and quoted a lot of statistics;

Personally, I think that she did a little bit of a disservice saying

that, especially at the very beginning, because she has no idea of

how your aunt will respond to systemic treatment. There are fringes

on the statistics, if you look at them, that suggest otherwise.

Fact of the matter is that they are, in fact, just statistics and

you aunt has just a good a chance, probably, as anyone else at this

point of being one of the 5-8% of Stage IV people that do survive.

Statistically, chemotherapy is not curative. But there are rare

instances where people have " complete " responses to chemotherapy.

If you look at the studies, you'll find them. In general, they

categorize response as " complete " or " partial " . " Complete " , which

you will see numbers associated with, means that the cancer fully

went into remission. Translated, it means " cure. " FYI - " Partial "

means that the tumor shrunk or didn't grow, but nevertheless is

still there. There is a briefing under files on this board's

homepage that also explains some of this - it is labelled CRC-

OSHU.ppt. Add to that the fact that large scale statistics are not

available yet for triple combinations with Avastin - who knows,

maybe adding that will add to the percentage of complete responses.

As I mentioned before, your aunt's response in the liver could

be good enough to where curative liver surgery is possible, even if

it is not now.

Or, as my oncologist told me in the beginning, maybe they will

come up with a cure in the next couple of years. The goal then

becomes to survive long enough to see that cure.

Or, consider what a radiologist who placed a drain for me said

when he stopped by to see me after I had surgery. He said, " I can

tell you believe. " I said yeah, I do. He said, " I do too. You

know, I've seen miracles happen. "

I'm not in any way trying to downplay the seriousness of your

situation or trying to be fairy land optimistic. But anybody on the

board will tell you that you got to jump out of the starting gates

with this thing. You cannot, under any circumstances, start off

devoid of hope, especially when there still is some. I think that

if you have that look in your eyes, there will be lots of good days

ahead, whether survival is long term, two years, or even a year. If

that look is not there, I think the good days will find a way to

avoid you.

So I think if I were you, I'd get the anger thing behind and get

ready to attack. Your aunt and you will never know if you really

can beat it unless you try.

Best and Prayers,

Joe

>

> To all of the fellow caretakers and cancerteers,

>

> Well we finnally got an offical diagnosis and prognosis. The good

> news is the new oncologist was very nice and informed and spent a

> whole hour with us. This was very different from the first guy.

> The doc is a woman! I like her. But the bad new is my aunt has

> very advanced cancer. Officially stage IV mastastic colon cancer

> that has invaded her liver, lyph nodes, blood stream and god only

> knows what else. Her prognosis is grim but the doctor said that

> stats are only that and there is no reason not to have hope but

she

> said statisticlly with no treatment she has maybe 6-9 months with

> treatment the median survival rate is 22 months. The 5 year

> survival rate about 5%. Needless to say we were all hoping for

> better news. My aunt asked what her chances were to survive

> completly forever or be cured and the doctor said 0. She did say

> that this was based on statistics and that everyone responds

> differently. The part that I think was the hardest thing to hear

> was when the doctor explained that there is only a 50% chance that

> the treatment will effect her 6-9 month prognosis. She tried to

> explain how advanced her cancer is. FYI she has somewhere between

> 15 - 20 spots on her liver. My aunt is my best friend and like a

> mother to me she is and has always been my best friend. She is

> scared to death at what she is facing and so am I. The only thing

> she keeps saying is thank god I have you . A part of me

wants

> to run and hide. It is hard for me to live and funtion normally

and

> deal with her every day. But I know that for her I can't do that

I

> need to be strong and help her get through this. I am praying for

> you all as I have been every night since I joinned this group.

> Today I am angry at this heartless disease!!!! I see what it has

> done to so many on this board and I hate it. I pray everyday for

> awareness about this disease and I signed up for igive.com and

> selected CCN as my charity. I will encourage everyone I know to

do

> the same. As it gets closer to Thanksgiving I am reminded of all

> the things I have to be thankful for. So happy thanksgiving to

> everyone!

>

> Love,

>

> Jenn

November 24, 2004

Jenn, everyone else has already so well that I would just like to

reinforce their comments. It's so true, stats are stats and while

cancer prognosis is highly based on them, there isn't one doctor on

this earth who is GOD and can say for sure how long any of us have.

Stats are constantly being broken...I can attest to that first hand.

When my mother was first diagnosed September 2002 with inoperable

stage IIIc lung cancer, it did not look good and while the five year

prognosis is only 3-5%, it's been 2 1/2 years for her and while not

cured, she is doing far better than I expected. Something truly to

be thankful for. You go right ahead and get angry at this disease

and focus that energy into helping your aunt give it a fight of a

life time.

Hugs,

Monika

>