Thursday, February 25, 2010

Pokkin & ah Proddin & Genotypin

Just got the important post IL-2 scans scheduled.  CTs and MRI are scheduled for March 9th.  PET is scheduled for March10th.  Dr. Kaufman and I will meet right after the PET to determine whether the IL-2 had a positive impact or not.  If IL-2 is successful, I will head into four more series of IL-2 requiring four inpatient stays.  If not, we will see if my brain is clear of lesions.  If I am clear, I will again be eligible for some clinical trials which we will evaluate as well as chemo combo options.  

In the meantime, I finally secured my primary tumor from Evanston.  It is now in the hands of a lab at Rush for B-RAF testing.  If any of you saw the NYTimes Melanoma series I posted this week, you'll know why that mutation testing is critical.  I have a 40-50% chance of having the mutation which may make me eligible for a new Phase III trial using PLX-4032.  

I cannot emphasize the importance of patients keeping ownership of their tumors, should they face chronic illness.  The days of one stop shopping for treatment are over.  If you are lucky enough to survive, you may very well find yourself following the best research and the qualified expertise...which definitely moves around these days.  Of course, getting my second tumor block out of the National Cancer Institute is a lesson in patience and determination.

46 comments:

George Alexander said...

Your ability to dig, digest and deal with the issues is remarkable. Has to be more than the survival instinct.... got to be in the genes.

Unknown said...

Susan you are very Courageous!

Anonymous said...

your very brave good job

Anonymous said...

You are Very VEry Very Very Very Very VeryVery Very Very VeryVery Very Very Very Very Very Very VeryVery VeryVery VeryVery VeryVery VeryVery VeryVery VeryVery VeryVery Very coragous

Anonymous said...

You are Very VEry Very Very Very Very VeryVery Very Very VeryVery Very Very Very Very Very Very VeryVery VeryVery VeryVery VeryVery VeryVery VeryVery VeryVery VeryVery Very coragous

Anonymous said...

susan. continue fighting and dont give up. hope everything turns out ok

Anonymous said...

Gett well susuan

Anonymous said...

Well to tel the truth, i would never be able to do what you have to go thorough. The stuff you deal with is unthinkable. You have my respect.

Anonymous said...

i hope your cancer gets treated the right way and goes away and doesnt come back. :)

Anonymous said...

I hope that you will find a way to get rid of this cancer.

Anonymous said...

your brave, i wish i could be as brave as you. stay strong susan!

Anonymous said...

get well soon :D
you are a very courageous cancer person.

Anonymous said...

WOW YOU ARE ONE BRAVE LADY AND COURAGOUS......ALWAYSZ BE STRONG!!
<<<333333

Anonymous said...

I'm praying for you!

Anonymous said...

I'm praying for you!

Anonymous said...

You are very brave and courageous. I hope you get well sooon! You're in our thoughts and prayers.

Anonymous said...

I really hope that this all goes well for you and that you can get better.

Anonymous said...

HOPE YOUR CANCER GETS TREATED........<3 HOPE!

Cathy said...

you're inspiring! you're in all of our thoughts!

Matt Guay said...

Your in our thoughts and prayers. Get well soon!

Anonymous said...

You are very brave. I hope your cancer goes away, keep staying strong!

Anonymous said...

YOUR IN OUR HEARTS AND ALWAYS WILL BE!!!!!!!!!!!!!!!!!!!!!



JUST TRY ....TRUST ME IT WILL PAY OFF!!!

Anonymous said...

you are very very very very very very very very very very very very very very very very very very very very very very very very very very very very very very very very very very very very very very very very very very very very very very very very very very very very very very very very very very very very very very very very very very very......

Anonymous said...

very very very very very very very very very very very very very very very very very very very very very very very very very very very very very very very very very very very very very very very very very very very very very very very very very very very very very very very very very very very very very very very very very very very......

Michael Marshall said...

Get well sooon!

Anonymous said...

very very very very very very very very very very very very very very very very very very very very very very very very very very very very very very very very very very very very very very very very very very very very very very very very very very very very very very very very very very very very very very very very very very very brave :)

Anonymous said...

good job

Anonymous said...

You are very brave! Hope you get well soon!

Anonymous said...

bravery...... you haz it

Anonymous said...

YOUR SOO BRAVE be proud of it =))

Anonymous said...

i'm so sorry that you have to go through this. it must be very hard. you are so strong. =D

Anonymous said...

your bravery is outstanding!

Anonymous said...

you have lots and lots and lots and lots and lots and lots and lots and lots and lots and lots and lots and lots and lots and lots and lots and lots and lots and lots and lots and lots and lots and lots and lots and lots and lots and lots and lots and lots and lots and lots and lots of courage :) did i mention youre courageous? and have a loooooottttt of courage? or that youre like really courageous? did i say that yet?

Anonymous said...

my friend david sitting right next to me here in the computer lab at our school says hi :)

Anonymous said...

wooowwww......yay ...........ur extreeemmmlllyy braavvveee haahh

Anonymous said...

he says you have a loooooootttttttttttt of courage and bravery and youre his hero and he loves you :) (david says this)

Anonymous said...

i guess im the last to...umm.....comment.....maybe not.........anywaysz,,,,,,..............STAYYY STROONNGG!!!!!

Anonymous said...

omg GOOD LIKE LUCK

Anonymous said...

good luck with everything and get better!!!!!!!!!!!!! <3

Unknown said...

Hi Susan,
We'll be anxious to hear the results on tthe 9th. Tom's girlfrined, Kara, teaches health. When they studied melanoma she had her students vist your site, read a posting, and leave a comment. Thus all the "very, very..." comments. Hang in there. The word is spreading!

Love,
Art and Ginny

Anonymous said...

You are amazing!

John + Adriane Lutes said...

Never thought I would look forward to you mutating sis! What wonderful words of wisdom on the importance of keeping ownership of your tumors. Your practical advice must be communicated to all cancer patients. So often this does not get passed along by the experts despite it being such an obvious recommendation to pioneering toward a cure. Keep us updated on your test results. Adriane

Dominic Dangerfield said...

Hey, I'm one of Damseaux's students. This is very needed. With all of the technology we are creating, research should have prominent results. We have all of these other research centers, but we need to continue making new ones in order to help everyone, rather than a selected few. A little work today can save many tomorrow. Keep pressing for it.

Tamira Garris said...

Hello, I am Tamira Garris, one of Damseaux's students and I respect what you are doing. You are a very courageous woman who is taking the neccessary steps to not only help yourself but others who are dealing with the same challenges which you are facing ...Stay strong..i know everything will work out just fine..stay humble!!!

Tamira Garris said...

Hello, I am Tamira Garris, one of Damseaux's students and I respect what you are doing. You are a very courageous woman who is taking the neccessary steps to not only help yourself but others who are dealing with the same challenges which you are facing ...Stay strong..i know everything will work out just fine..stay humble!!!

Thomas said...

this Thomas Smallwood, one of Damseaux's students, and i really support the things yall are trying to achieve, a lot of people need help, and if we don't help then who will? keep at it and i hope you achieve your goal