Update on me

[chrisy]

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]

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]

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]

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]

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

[dhealey]

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

[Andrea Barnett Budin]

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]

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]

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]

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]

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]

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

[PinkGirl]

Hi Chrisy

Add my name to the pile of well-wishers.

271

[Marlys]

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

[SoCalGal]

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]

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]

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]

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]

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]

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.....

[Kim in CA]

Dear Chrisy,

I'm am ever so glad to hear that this trial will be starting at UCSF. We are lucky to have Dr. Rugo and many other brilliant cancer docs so close by. I have a very good feeling about this trial.

I must admit, that I too over indulged with food and wine over the holidays and my labs and blood pressure have not been good lately. But, I decided six years ago when I became stage IV that I wasn't going to deny myself those little splurges now and then. Now that the holidays (and 4 family birthdays) this month are past I'm getting back to my healthier routine. I just wouldn't have had nearly as much fun if I hadn't gotten to enjoy all those tasty holiday treats! Besides, chocolate is good for me!!!

Sending positive smart bomb vibes your way, Kim

[runtolive]

chrisy.. congrats on the treatment... so far as i know, at least 3 women on this board are currently enrolled in the trastuzumab-dm1 trials. lily, marsha, and barb.. all are doing fabulous.. barb and marsha are doing once a week treatments and lily is every 3 weeks..

do you know which u will be. i have heard that genentech may start a second
phase 2 trial of the once a week dosing now that they have a good idea that they are able to infuse more drug into the body on the weekly regimen vs the every 3 week treatment. the every 3 week therapy dose is 3.6mg/kg. where as the weekly regimen is likely 2 - 2.4mg ..

keep us updated..

[chrisy]

I was worried about being "treatment neked" for 2-3 weeks (required for the trial) and wondering what I was going to do to keep those nasties under control until the smart bomb gits 'em.

Now I know, I will just read your post every day and laugh and laugh and laugh until I cry, releasing buckets and buckets of endorphins and other healing good things into my bloodstream!

I think maybe I'll get a t-shirt made with that on it and wear it to my treatment!

Flori, you rock! Thank you so much for always brightening my day!!!!!!!

Flori - you are most definitely still you. I'll be breathing only in between holding my breath for good test results for YOU.

Much love
Chris

[chrisy]

I will be on the 3 week schedule - although it looks like I will be having weekly labs done!

[runtolive]

please keep us all posted ... genentech is enrolling 100 patients in the every 3 week trial. i have heard they are past the half mark.. have u heard anything to that effect. this trial is so important for all of us.. if this trial completes its enrollment soon, genentech would be able to start a pivotal phase 3 trial by hopefully the end of the year.. and maybe be approved by late 2009 or 2010

run to live

[runtolive]

i would not worry about that. the TDM1 will kick that cancer out of you but good..
i just know u can fight it...

run to live

[Jackie07]

I remember reading somewhere that 'visualization' is good for us fighters. I vividly recall the pictures drawn by a survivor who happened to be an artist of comic
books. They were printed in the "Cure" magazine last year. I think we need to do the exercise every day - visualizing how cancer cells got destroyed by the cocktails. Medical research has concluded that the stimulation of endorphin will boost our immune system. So, yes, let's "blast the crap out of those nasty cancer cells!"

[chrisy]

I was told that there were 19 people already enrolled - but that does seem low to me! The total will be 100, 5 to be at UCSF (finally opening on the West coast!)

[lilyecuadorian]

Hi Chrisy we need to encourage more people to this trial ....maybe phase 3 enroll with less cocktail history ..that way some of our sister can enroll and get some "extra use from herceptin" and you need to open a new post with it I'm sure all the good news that you are going to get soon you can write on clinical trials like Barbara H ,and Marsha who share with me ,my post .......

[Barbara H.]

Hi Chrisy,
I would wait for liver ablation. I have a positive feeling that this drug will bring you to NED. It has been a miracle drug for me.
Good luck,
Barbara H.

[turbo]

chrisy, glad to hear about an exciting new treatment. I am still on The Tykerb/avastin trial...so far so good.I know that can change at any time so good to hear about this new trial!

[runtolive]

chrisy. what the verdict.. are u starting the tras-dm1 trial.. hope so..

runtolive.

[IRENE FROM TAMPA]

that you are able to participate in the DMI trial. I am desperate to get on it since my oncs office is offering it but since I have taken more then 3 chemos I am excluded. They are actually having trouble recruting because most of the women seem to be in the same boat as I am.

Hopefully they will push it through quickly.

Good luck and I am sure you will do great. Keep us posted please.

[chrisy]

As of the moment, the screening tests (yes, MORE PET/CT, X-ray and ECHO's) are scheduled for next week in hopes that I can start in the trial the following week. They are still waiting for the final contracts to be approved opening the trial at UCSF - this is supposed to happen by next week. Sure hope so as I'm eager (putting it mildly) to get this going I hate being untreated. Guess I'm just high maintenance.

Irene - yes I saw the Phase II trial only allows 3 prior chemos...the Phase I had responders who had up to 7. Hoping that somehow a door will open for you on this - I think this is going to be a great drug.

[Vanessa]

So glad you are able to participate in this smart bomb trial. I wish you the best and will continue to think about you and pray for you daily. GOOD LUCK!!!!!!

[jones7676]

Please keep us posted on how the smart bomb is working for you. I hope you are NED very soon!

[runtolive]

irene the phase 1 trial does not have those limitations.. contact one of the phase 1 sites asap..
nashville, boston,tx, ucsf, and one more. escapes me..

[TSund]

Chris,

Wishing you the VERY best. You and Flori always brighten my day in your posts. Sending POWER vibes to you... Smart bombs away!

Terri

[Catherine]

Chrissy,
Now that you have shipped Tiptoe and Tex on, I think it is time to start our own dictionary. You could be Mrs. Webster. Start with words like scanxiety and smartbomb. I hope the beauty of Santa Cruz and the spirit of adventure keep you on the track to good health. The army is behind you.

Hugs, Catherine

[RobinP]

Awesome trail to take part in! Sending prayers that it will work for you.

[runtolive]

any news to report.. how was your first treatment..

run to live

[BethC]

Chrisy,

I hope this smart bomb blasts it big-time!!! Prayers for you :)

Beth

[chrisy]

Still waiting for them (lawyers, probably!) to finalize the documents bringing UCSF into the trial. on January 17 they told me it was supposed to be in the next couple of weeks; earlier this week they said "hopefully by the end of the week".

Anyway, when they get the docs signed, then they can enroll me in the trial. I might get to be numero uno!

I must admit, I'm a bit nervous going into my 3rd week with NO treatment at all. They have sent me for the "entry exams" of ECHO, chest xray and (another) Pet/CT which were January 30 and 31. So now another clock is ticking as these tests cannot be more than 2 weeks old! I'm really hoping we can get started next week - which is the date they have been shooting for.

In the meantime, yesterday I had tests in 2 different UCSF locations which gave me the chance to experiment using their shuttle system. Assuming I get in this trial, I'm considering taking public transportation which would get me to SF (near the Pet/CT scan facility) then hop a couple shuttles to get to where the doctor is. With the price of gas, that will actually SAVE me money and although it will likely take a bit more time, it would be sleeping on the train or reading or meditating vs. fighting rush hour traffic. So the day was not a waste, although it definitely would have been more worthwhile if I'd been able to get treated!

[mimiflower07]

chrisy..wishing you all the best...another waiting game.hope it wont be long before your in. By the way just wanted to comment about your photo..what a great pic.
suzanne

[runtolive]

http://www.aapspharmaceutica.com/meetings/files/121/jumbenelsontranslationalchromopharmacology.pdf

info about genentech and trastuzumab-dm1

for you technical ladies..

[runtolive]

how did the second treatment go...

run to live..

[runtolive]

link to peer article from ucsf... tras-dm1

http://ww3.peerviewpress.com/gpimgs/fastcast/n181/n181.html

[turbo]

Thanks for passing that article on...I am currently on Trial at UcSf ..targeted Therapy!