T-DM1 & Pertuzumab: Still NED
 

Hi, all,
The results of PET and CT scans done Wednesday show no evidence of any disease whatsoever. Clean, clean, clean!
Thanks for your continued support and care,
Love,
Karen

Re: T-DM1 & Pertuzumab: Still NED
 

Magic has happened. Your case is the ones that the Genentech people love to hear about, as well as the rest of us in the pharmaceutical business.TDM-1 and Pertuzumab together is going to make some big changes in HER+. The goal is to test early to make sure the disease does not progress. How long are you going to be allowed to stay on the meds? NED is your friend.

Re: T-DM1 & Pertuzumab: Still NED
 

You go girl!
Such happy news!
xoxo Denise

Re: T-DM1 & Pertuzumab: Still NED
 

Wonderful news!!

Re: T-DM1 & Pertuzumab: Still NED
 

Thanks, all--behind the scenes, I am trying, with the help of advocates, to get the ball rolling on approval of T-DM1 and make sure those who need Pertuzumab get it, without restriction. (I have heard there is a possible December approval date of T-DM1-which is not soon enough).
Rolepaul, there is no end. I take the drug for however long it works. How far off is a vaccine or new HER2 smart bomb, do you think?
Karen

Re: T-DM1 & Pertuzumab: Still NED
 

Fantastic news!

Re: T-DM1 & Pertuzumab: Still NED
 

Woohoo - an happy dance! Oh yeah!

Re: T-DM1 & Pertuzumab: Still NED
 

Karen,

Fantastic news!!! Go out and celebrate ... and have a piece of cake for dessert!!

xo
Joan

Re: T-DM1 & Pertuzumab: Still NED
 

Congratulations !! I am happy for you. Happy dances and high fives all around. Keep up the great work.

Re: T-DM1 & Pertuzumab: Still NED
 

Karen....I love clean, clean, clean! Bravo! Ceesun

Re: T-DM1 & Pertuzumab: Still NED
 

KDR,
Thanks so much for sharing your amazing story. I just learned my tumor markers are again up from 107 to 129 on Herceptin, Tykerb and femara- and after just getting my ovaries out. My oncologist talked last month about putting me on TDM1 and hopefully eventually pertuzumab too. I am so hopeful to get that chance. I really want to be brave and not break down crying (again)- but this roller coaster sucks.

Re: T-DM1 & Pertuzumab: Still NED
 

That's what I'm talking about!!!

H UGS !!

Kim

Re: T-DM1 & Pertuzumab: Still NED
 

Awesome! How wonderful for you!

Re: T-DM1 & Pertuzumab: Still NED
 

Kristin,
I hope you get the T-DM1. Try for any trial you qualify for. I will be thinking of you.
Karen

Re: T-DM1 & Pertuzumab: Still NED
 

You see! You still have your shoe! I am so happy. Put your princess dress on and dance with NED. Michka

Re: T-DM1 & Pertuzumab: Still NED
 

OOOooop, hold on...
Just saw the oncologist and the scans are clear, but due to a two-point rise in my markers a few weeks ago, she's ordered a brain MRI. If the blood test drawn today goes up, then I have to do the MRI-if it went back down the two points, I can cancel the test. That's one thing about this regimen: it doesn't include the brain. Will know by day's end. I guess that's what trials are all about. Never a dull moment around here.
Warmly,
Karen

Re: T-DM1 & Pertuzumab: Still NED
 

Hoping you will not have to do the MRI.
And congratulations on your scan results! Very good news.

Re: T-DM1 & Pertuzumab: Still NED
 

Awesome news! Wishing you continued NED status....

Re: T-DM1 & Pertuzumab: Still NED
 

Good news on the scans, Karen.
With disease so well controlled elsewhere, I'm expecting to hear soon that you are also a Ned head.

Re: T-DM1 & Pertuzumab: Still NED
 

Thanks be to God! So happy for you!

Re: T-DM1 & Pertuzumab: Still NED
 

CEA went up two points to 9. So, yes, I do have to have the brain MRI. OK. Over a two-week period the CEA went up 1.6 points. I am NED in the body. I don't know about the brain now. I have no symptoms (neither did a lot of other people, though, who did have them). So, sit an wait, like catching fish.
If there are brain mets, what should I expect? I heard the hair never grows back where radiation happened.
Thanks,
Karen

Re: T-DM1 & Pertuzumab: Still NED
 

Karen -
My rising CEA was the telling point that something was changing with my cancer. The other scans were turning up nothing and it was time for my annual brain screening anyway.

I had Gamma Knife and I have the same hair now as before the procedure. Don't think cyberknife affects your hair follacles either.

All the best for a good MRI.

Re: T-DM1 & Pertuzumab: Still NED
 

Thanks, Steph. This will be interesting. Did your CEA jump by a few points or by the tens? I, too, have the clean scans...that used to be enough for me. Last brain MRI was clean in December 2011, a prereq for the trial. Year before same.
Thanks
Karen

Re: T-DM1 & Pertuzumab: Still NED
 

Karen,

My tumor markers were useless, and my onc recently stopped doing them. I felt like my security blanket had been taken away, even though the markers have never been out of normal range with a recurrence twice in the lung and once in the brain.

My hair grew back after IMRT. I had a 2-inch round bald spot, but it wasn't noticeable because of the part in my hair. The bald spot was on the left, just back from the temple by about 2 inches. I'm not sure whether the hair grows back with WBR.

Praying for an unremarkable brain MRI.

Joan

Re: T-DM1 & Pertuzumab: Still NED
 

The drugs that are in the pipeline are being kept quiet from many. My spies tell me that there is a significant work in this area. The cancer therapy companies want to be the leader. Xeloda, Tykerb, TDM-1, etc. are all being evaluated to improve their effectiveness. All I can tell you is that there roughly 1/3 of the 240,000 BC newcomers are HER+. That is a big market for these companies. There are a bunch of pharm people out there trying to help this population. I can tell you that these are motivated people! The positive results that I read on this forum I send to a bunch of others. You are the inspiration for more than you know.

Re: T-DM1 & Pertuzumab: Still NED
 

Karen -
My CEA did not jump - just edged up a couple or 3 points at a time. When it reached 6, my med onc did a bone scan first as that was likely in many cases, then we did bloodwork a little more frequently. This process took more than 6 months.

Since I had no symptoms to point to brain mets, that annual screening was not moved up.

I am just glad that I had only the two tumors and nothing else.

Rolepaul - Glad we have accumulated enough people and info on this site that it has some clout after all these years!!!

I was out and driving the day after my Gamma Knife. I had a low dose of decadron that I weaned from fast.

Re: T-DM1 & Pertuzumab: Still NED
 

Hi karen! Great news that you are still NED!!! Praying that your brain scan will be a clean bill!

Re: T-DM1 & Pertuzumab: Still NED
 

Wonderful to hear!