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chrisy 01-18-2008 05:31 PM

Update on me
 
Thanks to everyone who has been waiting along with me for results, answers and such. I feel like all my sisters (and some brothers) have been holding my hand through all this scanxiety.

Despite all that, I was pretty much a basket case earlier in the week. No communication, no news on the scan...so of course in my twisted mind that MUST have meant the results of the scan were getting worse and worse by the minute, like the portrait of Dorian Gray. Call it temporary inscanity.

Actually, the reason I had no word was because they still did/do not have final results. When I saw the doctor, we all (me, the doctor, NP, and trial coordinator) looked at the report together and it made no sense to any of us. Things were not measured that were there before. It wasn't clear how many lesions there were, or where they were. Parts of the scan were misregistered because I had breathed during the 20 minute PET scan. I'll try not to let that happen again.

Anyway, the conclusion of all that was that there's pretty good consensus that there is progression, even if the details are a bit sketchy. However, it was definitely not as extensive as it had become in my scanxiety-ridden mind. Enough to require a change of course, tho.

On the positive side, my liver is very healthy with all lab enzymes very comfortably back in the normal range. My labs on January 2 showed elevated AST and bilirubin at the upper limit of normal. So it must have been all the pizza and mulled wine over the holidays.

The new plan is a change of plans...not any of the things I had expected! It looks like I will continue my lab-rat status in a new trial, the trastuzumab MCC-DM1 study. I heard an update on it at San Antonio and was disappointed to see it was not available anywhere in California...only it WILL be opening at UCSF in a week or so! Of course I have to get more scans before I start:O

While I'm on the trial, I will also be consulting with the RFA/Surgical team to see if I qualify for ablation of the liver lesions, should any remain after the next attack.

Dr. Rugo seems very excited about this drug - a supercharged Herceptin with a nasty toxin tagged onto it. She called it a "smart bomb". That's why Tiptoe is so excited - more good uses for Herceptin!

So I'm hopeful it will blast the crap out of those nasty cancer cells. Sorry to sound so violent but it's an acceptable image in that context, don't you think?

Anyway, on we go...hanging on to the next hope!

Thank you all again for supporting me so much and wrapping me in your love.
Chris

Mary Anne in TX 01-18-2008 05:45 PM

Chris, someone has to be the 1st miracle on the new "stuff". Why not you? Why not now? I'm praying and believing. ma

Mary Jo 01-18-2008 05:47 PM

Hi Chrisy,

Thanks for the update. I felt very encouraged when I read it and feel very hopeful for you.

Love & Peace,

Mary Jo

Bill 01-18-2008 05:59 PM

Hi Chrisy! It sounds like great news overall. I'm so glad you can stay on the trial. I'm sorry you had such a bad anxiety-filled week, but I hope you feel a little better now. It sounds like our prayers were heard, though, and that little groundhog thing Kate sent to you helped out as well. (and that tiger-type creature, too) Love and prayers, Bill

hutchibk 01-18-2008 06:46 PM

Here's to your 'smart bomb' Chrisy - you are on path to pioneer and trendsetter status, I just know it!!

dhealey 01-18-2008 07:04 PM

Chris, Hope this new drug does wonders for you. Thanks for keeping us informed.

Andrea Barnett Budin 01-18-2008 07:35 PM

Go get 'em, Chrisy,

Supped up Chinese hamster ovaries sounds better than great. Just right for you. Full of piss and vinegar, eh Chrisy?! http://cdn-cf.aol.com/se/smi/0201e05fca/02 Love the concept. And YOU. Sending hugs and healing energy... Wish you could fast forward to NED, but sounds like you're on the path!
Andi http://cdn-cf.aol.com/se/smi/0201e05fca/06

Lolly 01-18-2008 10:11 PM

Chrisy, sounds good to me! The reports on this new Herceptin sound so exciting, I can't wait to hear how it goes for you! You WILL kick %##&!

<3 Lolly

lilyecuadorian 01-18-2008 10:15 PM

Dear Christy you are so welcome to this Trial Trastuzumab-MCC-DM1 you will do it great like all sister that are already on it ....I think you are doing a great choice ...and I thinking the same thing like you .. is another way to use herceptin ....and plus really easy to tolerate ...by Friday I will have my next results ...after my 4 treatment with this trial ...and I hope so can give you more hope ...for you for me and for many more ...

goops 01-18-2008 10:23 PM

Here's to the smart bomb :) !!!! How can you go wrong with a such a smart bomb - best of luck. My prayers are with you.

hermiracles 01-19-2008 06:38 AM

Dear Chris - so glad things sound like they are taking a positive turn for you with this change of plan! This trial sounds amazing - all the best!
Blessings
Hermiracles

tricia keegan 01-19-2008 09:10 AM

My thoughts and positive vibes are with you and your smart bomb treatment Chrissy...hope you do kick some cancer butt big time!

PinkGirl 01-19-2008 09:19 AM

Hi Chrisy

Add my name to the pile of well-wishers.


Attachment 271

Marlys 01-19-2008 10:05 AM

Me, too. I like the smart bomb analogy. I pray that it works.
Love & hugs,
Marlys

SoCalGal 01-19-2008 10:25 AM

Fo' Shizzle...
 
Whenever I read about the dm trial I always think of the rapper RunDMC. And just yesterday another friend of a friend w/mets called me and is going up north to have a consult w/your onc. She has a brilliant reputation.

Okay - so in the spirit of RunDMC I'll say HIT THAT SH*T DOWN - that how we roll...fo' shizzle wit the dizzle...da bomb gonna blow.......

I wish I didn't start that paragraph but perhaps it will give you a laugh. As always I am with you on this. Am also awaiting results of a brain MRI - am pretty sure she didn't call on Friday because it's so extensive that she didn't want to ruin my weekend. Even as I type this I know that it's more likely that she didn't even bother to sort thru her enormous stack of papers and reports and really - how bad can it be if I am still me?

Okay - so perhaps I'll fly up to the SF area and hang out with you when you start your treatment. Do you like to shop? Retail therapy is quite effective I've found:)

Have a good weekend. BREATHE...
Love
Flori

tousled1 01-19-2008 11:22 AM

Chrisy,

Smart bomb, huh? I like the sound of that. That's exactly what's needed to just smash the mets into oblivion. I've read nothing but good news about this trial. I'll keep you in my prayers.

Adriana Mangus 01-19-2008 11:27 AM

Treatments
 
Dear Chrissy,

Never despair. Sometimes it takes time to find the right combo, all we have to do is to be open to everything and anything available to us. I know you are positive and looking for the magical word - NED. We are here to offer support to one another, hang in there. Stay positive. Oh.. continue having pizza and wine, me too had elevated liver enzymes for the same reason.. I'm just having a good time and staying positive...that's what everyone wants me to do right?? :-)

TriciaK 01-19-2008 11:53 AM

Chrissy, I am really excited about this new treatment, too. I even like its name "Smart Bomb"! We will all be praying for you and anxious to hear how good things progress for you. You'll be dancing with NED in no time! Hugs, Tricia

Carolyns 01-19-2008 11:56 AM

Hi Chrisy,

I am sorry that you have been having such a difficult time and that the results were not what you had hoped to hear. That said, it seems like it was better than what inscanity would have had you believe. It seems that no matter how hard I try to keep my fears and thoughts under control at scan time, some times it is just impossible. Like the time I had a brain scan and after the test when I got up off of the table the tech asked me: "Are you having headaches?" I said, "Why do you ask now?"...he just looked at me with a blank face and said he just wondered. Waiting for results that time was especially difficult and inscanity consumed me.

I like the idea of the smart bomb and I pray that it will do the job. I have a good feeling that it will.

Love, Hope, and Peace,

Carolyn

Sheila 01-19-2008 11:59 AM

Chrisy...Always gotta be the first to try something new, don't ya...the Kleenex makers will surely suffer losses with no Avastin....heres hoping this is the magical bomb to get rid of those nasties once and for all! With your attitude, you are in a win win situation.....


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