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-   -   Trial Scan Nirvana:) (https://her2support.org/vbulletin/showthread.php?t=40204)

chrisy 06-27-2009 04:53 PM

Trial Scan Nirvana:)
 
HI friends,

I hesitated to post this here, in the presence of so many of our friends struggling right now...

On the other hand there is nobody else who could fully appreciate this piece of GOOD news! A little more hope in the world.

The short, answering machine version from my onc nurse:

"Echo looks great, Pet/CT looks great...let me read my favorite part...No evidence of metabolically active recurrent or metastatic cancer"

T-DM! (yes, I'm replacing the "1" with an exclamation point from now on!) has been a great drug for me, well worth the freaky beetjuice and carrot salad diet to keep my liver enzymes in treatable range.

I so hope that it will be available to more people SOON because when it works, it can work very well.

Of course I'm overjoyed to renew my license to breathe for another few months...

This time I had the added excitement of having had the Pet/CT denied by my insurance co as "not medically necessary" based on recent history of scans and labs not showing...anything! So that was a good news/bad news moment. Fortunately they were able to work that out!

Truly, clinical trial nirvana!

By the way, you probably can't see it but my new avatar pic is of a tree growing from solid rock in my favorite place in Yosemite...

Patty F 06-27-2009 05:48 PM

Chrisy...congratulations on this great news. Don't ever feel bad about posting GOOD news...we all need that.

Believe51 06-27-2009 06:16 PM

Chrisy, I cry as I tell you that I am so ultimately ecstatic for you. It is true when you say who better could appreciate this news, which is much better than just good in my opinion. With the recent trying struggles Ed and I are combatting, I agree that we could not be any happier than if this was happening for him. We are floating right along with you with as we read and feel this news. See Lovey, it does not really matter to me who this miracle combo has worked for. It matters that it is someone we love and pray that this will happen for. We take this as a personal victory!!

You are graduating to prayers that keep you where you are at while I pray harder for other miracles for those whom need them, okay? You have given us all hope again to fuel our fires in our own journeys, to smile as we take our minds off our ownselves to celebrate in miracles and inspiration. For Ed and I this news could not come at a better time. We are truely living life through this mess we are in and we needed to see this wonderment occur for you. Tonight it is specifically you whom is responsible for improving the QOL for us. You are 'Today's Joy' for us!! (wiping my eyes)!!

You have helped us to be the Warriors we are today, Chrisy. Your constant fight to get where you need to be and watching you climb there, well, I cannot tell you what a pleasure it is for us to see you plant that flag at the top. I envision this flag saying unselfishlessly...."This is for me as well as all of you!! Never give up, continue to fight, live, breathe!!!"

Chrisy, how is the air there?? Breathe out.>>Loving you>Believe51

'lizbeth 06-27-2009 06:59 PM

Sweet Chrisy!

Gerri 06-27-2009 07:14 PM

Chris,

To me, this support board is for those who are in need of HELP and those who are in need of HOPE. Your news is the best of both worlds. I am so happy for you. Thanks for the sharing your fabulous news - it could not have come at a better time!

Love to you,

hutchibk 06-27-2009 07:28 PM

Wonderful news Chrisy! Thanks for sharing the hope...

caya 06-27-2009 09:34 PM

Chrisy, thanks for such this fantastic news!! It brings great hope to all who are struggling...

all the best
caya

sassy 06-27-2009 10:02 PM

Chrisy,

Thank you for sharing your wonderful news! It bring joy to all who have been following your trail and rooting you on. It would be a shame not to share your good news with all who are invested in YOU!!!

You GO Girl!

Chelee 06-27-2009 11:51 PM

Hi Chrisy, I am SO glad you decided to share your GOOD news! That is fantastic...it's absolutely great to hear how well DM1 is working for you...and it also gives others hope that it might work for them too IF needed in the future.

You have no idea how happy I am for you...this makes me smile. Thanks for sharing this with us...looks like you can breath easy for a while. I'll keep you in my thoughts and prayers for you to continue to remain NED. Woooo Hooooo!

Chelee

michka 06-28-2009 12:00 AM

Dear Chrisy, this is wonderful! and I like the description of your avatar picture...
Michka

Pam P 06-28-2009 04:24 AM

Chrisy - This put sunshine in my day!!!! And I think I hear an orchestra playing too! Hooray for t-dm! & hooray for you!!! Pam

schoonder 06-28-2009 04:59 AM

Wonderful news Chrisy, I'm so very happy for you.
Genentech is about (in August) to start an additional T-DM! phase 1b trial in conjunction with GDC-0941. It doesn't look like it will be a large trial, details are provided on clinicaltrials.gov

Mary Anne in TX 06-28-2009 07:11 AM

Hooray for TDM! and those terrific doctors like yours! You've really got something to celebrate Chris! What incredibly wonderful news. That news costs a lot of trips and a lot more courage, but WOW, is that super encouraging. Cheers! ma

Lori R 06-28-2009 08:31 AM

Chrisy,
WOW!!! Fantastic news. I am so happy for you and thrilled that you shared the news with us.

I do remember the "early days", can't say they were the good ole days of your fight to remain in the trial. I am thrilled that all of that effort has paid off in such a big way.

Your post does bring hope to so many of us and I appreciate your updates.

Keep it up!!! Lori

Shobha 06-28-2009 09:10 AM

Thanks for sharing the great news, Chrisy! May you be blessed with continued NED status!

hugs,
shobha

Lida 06-28-2009 01:30 PM

Dear Chris,
So happy to hear of your great results! You have worked through challenges and are an inspiration to all of us. I would like to try T-DMI as soon as possible. Praying for continued success, Lida

Patb 06-28-2009 01:47 PM

You have been through a lot. This is wonderful
news.
patb

Jackie07 06-28-2009 03:42 PM

Chrisy,

Thanks for sharing the good news. We love good news...

DonnaD 06-28-2009 07:08 PM

Consider yourself hugged! What wonderful news. You are an inspiration to others as they consider T-DM! I remember sitting in a session in San Antonio, thinking this could be the answer.

Perhaps you can forget about the beet juice and carrot salad. Sheila would say it is time for a chocolate/tini.

Sooo happy for you.
Love,
Donna

Carolyns 06-28-2009 07:18 PM

Chrisy,

That is outstanding news and no one deserves it more than you. Drink it up and soak it in!!!!! This is glorious news! I am sooooo happy for you!

Love, Hope, Peace,
Carolyn

jml 06-28-2009 07:45 PM

Yay Chrisy!
Thanks for sharing your wonderful news.
Successful treatment for any one of us is a VICTORY of ALL of us!

Keep the Faith~

Jessica

Dx - 5/17/2002 @33yo ;Stage IV - IDC + liver met;
Lumpectomy, 12/12+ nodes; er/pr-, Her2+++
Tx1 - Navelbine+Herceptin x 8 wks; No response, progression - single liver met to "innumerable/immeasureable"
Tx2 - ISIS 2504 - clinical trial x 6mos
Taxol + ISIS (continuous IV);partial response.
Tx3 - Taxol+Herceptin x 13 weeks
N
ED :)
NED 9/11/03-9/17/04, then single liver met recurrence.
9/04-Recurrence 1- Taxol+Herceptin x 4 weeks prior to RFA, but NED again, cxl RFA.
12/04 -Recurrence 2 - single liver met
1/05 - RFA - partial response
2/05 - Abraxane+Herceptin x 9 weeks;No response due to improper dosing(?)
3/05 - Taxol/Carbo/Herceptin to NED again.
11/05 - Recurrence 3 - same single liver met
12/05 - Right hepatectomy-55% liver removed. Success. NED in liver ever since.
2/06 - Recurrence 4 -single lesion in L breast again
3/06 -excisional biopsy. 1cm IDC, extensive high grade DCIS.
No tx due to liver still healing post hepatectomy, follow with Herceptin & scans to keep an eye on DCIS
12/06- L mastectomy w/ reconstruction 3/07 & 8/07
10/07 - Recurrence 5 - Supraclav nodes
Tx4 -Gemzar+Herceptin, til NED 3/08.
9/08 -Recurrence 6 -Supraclav nodes again.Rads1 - x 7wks
10/08 - Acute Renal Failure - ICU x4 days, hospital 1 week,
stents in ureters/kidneys x 4mos.still no known cause???
10/08 - Recurrence 7 -Sternal nodes; supraclav -NED:)
Tx5 - repeat Gemzar+Herceptin; NED in 1/09; finish GH cycle to 3/09.
4/09 - PET scans shows recurrence 8 in sternal nodes...progression while on GH cycle.
6/09 - Tykerb/Xeloda...so far, so good. I have "the Rash"...

runtolive 06-29-2009 08:01 AM

chrisy, you had mentioned in the past that their were a few other women at your center being treated with TDM-!. have you heard how they are doing.

has dr rugo pursued anymore talks about compassionate use being an option sooner than outright approval for TDM-!

run to live

chrisy 06-29-2009 10:23 AM

runtolive

I personally know one other woman who started the study at the same time as I did and is also in the continuation study, she's doing great. There are others also doing well; I just don't know them! I'll ask next time I'm here if there is any further news on compassionate use - we really need this to be available for more people.

Donna - LOL, you're right! Sheila would recommend a chocotini for sure. I guess I'll have to settle for a muffin, they don't have martinis here in the infusion center (only the sort of cocktails that come in an IV)

Julie2 06-29-2009 02:59 PM

Great news! I am so happy for you.

Julie

Sheila 06-29-2009 03:15 PM

Chris
I am so happy for you.....this is great news for all of us who are waiting to be able to get this drug.....I am sure I can figure out a beet juice martini just for you.....You are my hero....and no one deserves this good news more than you!!!!!

fullofbeans 06-29-2009 05:00 PM

Great News! I also had great news to post and off course it feels wrong when others are having a hard time. But I also think that great news gives hope to many on this site too.. certainly does for me, knowing that it is possible is half the battle.

Joan M 06-29-2009 05:16 PM

Chrisy,

Thanks for letting us know this great news. You're a trail blazer for our cause.

Joan

chrisy 06-29-2009 08:01 PM

SHEILA!!!!!!!

Bite your tongue! Beet juice martini??? puh-lease!

But if you can figure out how to make chocolate beets, that would be good:)

Jean 06-29-2009 08:44 PM

Chrisy,
This is wonderful news....of course you must share it and also gives us the pleasure to feel joy along with you.
Wishing you contined JOY!!!!

Huge Hugs
Jean

StephN 07-01-2009 11:37 AM

Adventures in Drugland
 
Dear Chris -

You are one of the Standard Bearers for the T-DM! drug and, as such, we need to keep up with how you are doing and continue to do. With early entry and good success, your results have meant a lot! It is the likes of YOU that will help get the FDA approval sooner than later!! (This is not flaunting - it is contributing to a body of scientific knowledge.)

My med oncs have called me a "Standard Bearer" for long -term Herceptin and have made me understand how important it is for people who do well to stay out in Canserland helping others in this place to find their way.

Rejoice in your good fortune and ability to utilize this drug as a successful force against a really pernicious disease. We join you in that rejoicing.

WomanofSteel 07-01-2009 03:34 PM

Chrisy, awesome news! I hope they fast track this drug I could use me some of this!

Bill 07-01-2009 04:00 PM

Wow, Chris! You go, girl! Thanks for sharing the good news. You are one of the trailblazers.


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