wrong about ct results

Sundanceh said:

Whoa, Hold the Phone
Wow, Pat

That's a real 180! This kind of news is very unsettling when you hear it in person - your brain just begins to race around.

It sounds like you have either done the Folfiri or the Folfox, both have 5fu and Leucavorin in them...Folfiri contains Ironetecan, which goes by Camptosar or CPT-11. Folfox contains Elotaxin, fondly known as Oxaliplatin. That one's got the bad neuropathy and cold sensations in it.

I had to calm down myself - after reading this my heart was racing and my blood pumping, and my brain was thinking faster than I could type.

Better now, so here are a couple of points to hang onto:

1. It is TIME to begin your search for a 2nd opinion on a new onc, perhaps at the facility
you are currently going to or perhaps another facility. It sounds like she has reached the
end of her "expertise" in the war against Cancer. There are many, many options out there
for treatment. And she did not even offer to help you find a clinical trial, or if you
would qualify. Forgive me, but staying with her will probably get you to those stats she
mentions...what you need to hear right now is the word HOPE and we can try something ELSE.
Her not feeling that there is hope will not help inspire you and you need to BELIEVE that
whatever you are doing will only give you hope with the outcome of cure. If she does not
believe that, then you must find someone who has. True victory and success will come from
this approach.

2. She should not have told you what her "prediction" is for your outcome. As many have said,
I have not found one doctor who can "accurately" predict when a person checks out of this
world - that's for Bigger Minds than ours to make this assertion.

I had a team of doctors tell me in Dec07 at Christmas that I probably would not see next year's Christmas - guess what, Pat? I saw Dec08 and just finished Dec09 - 2 years by my count. And they were all so SURE that within ONE YEAR, the cancer would return to my liver. They were almost gleeful in their "prediction" of that. Guess what, Pat? Proved them wrong again - I just love proving doctors wrong.

I respect the medical community, but you have to watch them - take what they say, but don't buy it hook, line, and sinker - be your own advocate and do your homework, and show them that you are a PROACTIVE member of your cancer team and you're not going to take this lying down, No sir, no way!!!

I believe in Quality of Life and I'd like to think that at any given point, I would know when to throw in the towel - BUT not before a good fight!!! And I just love a good fight!

And let me tell you this and I know this - my friend Pat/Kapper48 is a fighter - he's not gonna' quit - he's gonna bloody Cancer's nose - and he's gonna' hit Cancer square in the jaw, just to let Cancer know that good ol'Pat is still here - and still with US here on this board.

I've come in a short time to really like you Pat - you seem like a very gentle man and a good family man, great husband and all of that. Thanks for sharing your thoughts with us, it really helps to get to know someone like this.

And because, I like you, I am passionate in this post, 'cause your onc just lit my fuse today and it's hard to get me upset anymore.

Now, I need a favor from YOU - I want you to get MAD...get angry...and tell the Cancer, "You want some - you got some!" I said you were Nice, but you've got to get MEAN now in this stage of your journey - just be MEAN to the Cancer and let it know, "In for a Penny, In for a Pound."

And I'll close with my favorite Cancer Battle Cry: (Say it with me, Pat)

"Cancer does not define me, but HOW I live and fight Cancer DOES define me."

And by my definition, Pat is a fighter and big time warrior!

And on a lighter note, your wife Carrie, was lovely, so nice to meet her.

Pat, I'm pulling for you very, very hard now....go get that vacation you need, it's a good time. And when you come back, "Your Mind Will Be Right to Fight."

BTW...I'm 48 too, Pat

Your Friend
-Craig

geotina said:

Yikes
Never expected you to be posting this news. I thought the bladder cancer was bad but, ok, you can deal with that one but this new stuff, yikes. I don't know where you live but if you let us know I'm sure the board will let you know the cutting edge places to get a second opinion rather quickly and maybe even the name of some doctors. If you can get a jump on this before you leave for vacation then you will be prepared to get the ball rolling when you return. A NCI (?) facility is probably what you need.

Here in Michigan, that would be the University of Michigan, Ann Arbor, Michigan. Heard they do some wild stuff, think outside the box, stuff there.

I am so sorry for this news. I keep searching for words of comfort for you and your family but nothing seems appropriate. I, as well as others, care very deeply when one of our own receives bad news. Tina