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KDR
05-15-2012, 01:24 PM
Hello, everyone,

Hope you are feeling well. As asked, I am checking in to give you any and all updates so you can take this treatment trip with me.

Email results of my last scan (which I do every six weeks on the trial) read: Fantastic news! There is no cancer activity in my body on the current regimen of T-DM1 and Pertuzumab. It is a bit hard on the platelets, but once you rebound, it's almost like feeling and living "normal," just a bit tired. I have residual neuropathy in my fingers from Taxol, but try to deal with it without meds.

Let's keep pushing via petitions and other plans to make the FDA listen. Personal letters never hurt (hint, hint).

Meantime, I am positive about newer treatments and vaccines as well. Please, if you haven't done so, donate some of your tissue; I have heard from scientists that tissue donation is one of the reasons we are talking longer to beat this dis-ease (less giving, HIPA laws, etc.).

So far, so good. Let it be this way for all. End of story. End this story.

Karen

ElaineM
05-15-2012, 03:09 PM
Your news is so fantastic !!!!!!!!!! I am thrilled for you !!

Yes. I am am looking forward to the new treatments coming out too. Cancer treatment is going to be so much better after those treatments are approved.
I also encourage people to sign petitions, talk up the new treatments in their doctor's offices and do whatever they can to make it happen.

Enjoy dancing with NED !! He is a great guy !! I hope the two of you have many happy years together.

Vicky
05-15-2012, 03:13 PM
Karen,

That is great news! I too hope you remain NED forever!

I was on T-DM1 for 10 months but don't know if in the second arm of the trial I received Pertuzumab or placebo... have been wondering how I find this out or if I have to wait till study is complete?

Thanks for the insight on tissue donation and petitions/personal letters- great ideas!

jml
05-15-2012, 04:16 PM
I'm so glad that you're having such great success on this combo.
It brings tears to my eyes the thought of how much this will help
so many people. We just need it to get approved and on the market.
I'm days away from 10years with Stage IV disease, I have run out of standard of care options, but by the grace of God, I am doing well on the current old school combo I'm on - oral methotrexate & oral cytoxan daily. Old school, new school - whatever works, I'll take it.
I just so look forward to populating my medicine cabinet with new options and pray that they come soon.
Congratulations to you!

Keep the Faith~

Jessic

Mtngrl
05-15-2012, 05:02 PM
Karen--

What kind of tissue? Donated to whom?

I'm thrilled to hear your wonderful news. Oh, happy, happy day!!
Yeah Karen! Yeah "Vitamin P." (Pertuzumab)

Oh I hope it gets approved soon.

NEDenise
05-15-2012, 05:50 PM
Karen,
You made my day!! I'm so happy for you...and for all of us!
Not bragging here...but I already donated tissue...I figured I wasn't using it anymore...why not let the researchers have it.

And I try to nag government officials about our needs at least once a week...not sure if it's a personal goal...or a mission from God...but either way...it feels good!

I'm sooooooooo happy for you! I can hardly wait for this combo to be available for all our sisters who need it ...Amanda ...Amy... Chris... Sheila... Marie... Jessica ... Hema ... Christine ... and many, many more. What a happy day that will be!

Thanks for helping to blaze this trail!
Denise

KDR
05-15-2012, 07:58 PM
When you are thrilled for me, you are thrilled for all of us! Thanks, Elaine, Vicky, Jess...Jess, hope you are feeling lighter this week...I've thought of you often...

Amy, tumor samples from your biopsy slides or when asked to donate (seriously, I've recently found out that so much more could be researched if all tumors could be looked at).

Hi, Denise, well, as usual, I just love you!

Best
Karen

Mel3
05-15-2012, 10:39 PM
That is wonderful news, congratulations!!

yanyan
05-16-2012, 10:00 AM
Great news Karen ! Congratulations !!!!

MJsHusband
05-16-2012, 10:33 AM
Great news! Happy for you and everyone on here.
~Greg

Mandamoo
05-16-2012, 02:24 PM
Awesome news - happy dancing right now!

Joan M
05-16-2012, 06:30 PM
Karen,

As you already know, fabulous news about your scans!! And glad that you're feeling better, too!! Yes!!!

xo
Joan

chrisy
05-16-2012, 07:20 PM
Great news! Keep up the good wrk!

DeenaH
05-16-2012, 07:59 PM
I'm so happy for you!!!! That is my dream combo (plus Tykerb to break the BBB and keep me brain met free). Thank you for paving the way for the rest of us!

fullofbeans
05-20-2012, 07:47 AM
Great great news, glad it is working and that toxicity is very reasonable, glad to hear your enthusiastic way you are writing after these good news may it be for very very long

Vicki revised
05-20-2012, 08:12 PM
2 more weeks until the FDA decides...I thank God everyday for the scientists who devote their careers to discovering new treatments for all diseases.

KDR
05-21-2012, 08:02 AM
And when approved, only takes five days to get to patients, that'll be the 13th.

Karen

schoolteacher
05-21-2012, 10:11 AM
I do hope it is approved this time.

Amelia

KDR
05-21-2012, 10:50 AM
I think T-DM1 is looking at a December date. Pertuzumab is 8 June. And it's looking good!
Karen

bevilj
05-21-2012, 12:39 PM
May you have a long and wonderful dance with NED!

I donated tissue awhile back myself after reading "The Immortal Life of Henrietta Lacks". If you haven't read it yet, I highly recommend it. Medical advances are amazing and here's hoping we see many more in the months to come.