Stage IV. 3 years NED with Kadcyla/TDM1!
 

Hello everyone,
I wanted to share that I had a scan and a MRI yesterday. Still NED!
3 years on Kadcyla (TDM1)! 46 rounds.

I had dozens of tumors when I started. I had to have a stent put in because of a bile duct obstruction. I became Ned after just a few weeks on TDM1. It is a miracle drug for me. I hope it will help many many other HER2 sisters and brothers.

It is not an easy drug for me but I know many women who have less if not no side effects. I started at 3.6mg/kg then moved to 3.0 mg/kg and now I am on 2.4mg/kg. My infusions are every 4 weeks instead of every 3 weeks.

My liver shows signs of toxicity so I do not know how long I can stay on Kadcyla now. The doctors do not really know what is best for me. It is a benefit/risk game. My feeling is that it will be up to me to decide when to stop. I feel this moment is not far because I am not feeling well but I am afraid the cancer will come back.

I am so grateful to some of our courageous HER2 sisters who went in the early phase trials such a Barbara H or our dear Chrisy.

And you know what? I drank a half a glass of wine to celebrate! (I know, it is not good for the liver but I never drink wine anymore).

Michka

Re: Stage IV. 3 years NED with Kadcyla/TDM1!
 

Congrats!!

Re: Stage IV. 3 years NED with Kadcyla/TDM1!
 

YAY! That is such good news, Michka! You made my day!! I will have to have a glass of wine in your honor. :)

TGIF!! :)

Carol Ann

Re: Stage IV. 3 years NED with Kadcyla/TDM1!
 

Bonjour chere Michka!

Excellent news! I pray that you will continue to be NED for many many years... hopefully you will be able to continue on the TDM1 as long as you need it.

Bises a toi, ma chere amie!

all the best
caya

Re: Stage IV. 3 years NED with Kadcyla/TDM1!
 

Michka I am so extremely elated for you! You give me hope! My onc is suggesting this as the next treatment and I am apprehensive because of the side effects. I am so underweight, though, that I can't start it yet but that's okay because I haven't had scans for awhile and I need to deal with one thing at a time like gaining weight.

Do you have the option of going back to Herceptin only?

Again, I'm so happy for you-you deserve this good news!

Re: Stage IV. 3 years NED with Kadcyla/TDM1!
 

Wonderful news Michka and long may Ned be with you, a little drop of what you fancy won't harm you and I'm raising a glass with you! Slainte!:)

Re: Stage IV. 3 years NED with Kadcyla/TDM1!
 

Cher Micha, je suis si heureux vous êtes toujours Ned mais désolé d'apprendre que vous ne vous sentez pas bien. Je ai eu Ã* vous écrire en français que je reviens tout juste de mon premier voyage Ã* votre beau pays.
Je ai dû sourire quand vous avez mentionné boire le vin. Quelque part, je pense que votre foie apprécié que le vin :)
Je espère que vous vous sentez mieux et envoyer mes meilleurs voeux.
en jean

Re: Stage IV. 3 years NED with Kadcyla/TDM1!
 

Great news Michka. Why dont you try by increasing the intervals in the dose. Like you should now go for 6 weeks interval and then you can see again after 6 months, if things are ok which I hope will be then you should have it to once a quarter. This will help you to be on TDM1 while give time to your liver to recover

Re: Stage IV. 3 years NED with Kadcyla/TDM1!
 

I am so happy for you. I understand your concerns. Is Perjeta available in France yet. Maybe Herceptin/Perjeta will continue to be a good combo to keep you NED when you have to stop tdm1

Re: Stage IV. 3 years NED with Kadcyla/TDM1!
 

Wonderful news Micha! Enjoy!

Re: Stage IV. 3 years NED with Kadcyla/TDM1!
 

Thanks for sharing the good news. Here's a toast to you!

Re: Stage IV. 3 years NED with Kadcyla/TDM1!
 

Bonjour Michka,
So happy to hear about your good news and yes it is very encouraging news for all your HER2 family.
I do hope they find a way to combat the toxicity to the liver. Have nutritionists or an internal medicine person had any suggestions? I'm sure you drink a lot of water in hopes of flushing it out.
Hope the weather is nicer in Paris than down here in the south.
love sarah

Re: Stage IV. 3 years NED with Kadcyla/TDM1!
 

Congratulations ! Lorraine is still ned - passed 3 yrs ned last fall. off drug since October . watching closely.
Lorraine says " enjoy a little wine - you earned it ". she has a glass every few months or so for a special
occasion . no harm we can see on liver and hers went through a war similar to yours . now , if we could band together and get these gov.'ts to stop restricting its use ... if we had advocacy grps that actually spoke for stage iv... the only one is Abigail Alliance - because they've been there , trying (dying) to get a trial drug
. read their website , support them - ask your bc advocacy grp why they do nothing to save lives this yr and next , and next ...their advocacy might save lives 5 yrs from now - stage ivs need activism Now !

Re: Stage IV. 3 years NED with Kadcyla/TDM1!
 

Very glad to hear from you Michka. Congrats on the 3 year mark, and your determination!

A.A.

Re: Stage IV. 3 years NED with Kadcyla/TDM1!
 

Many congratulations. Very good news.

Janie

Re: Stage IV. 3 years NED with Kadcyla/TDM1!
 

Congrats! you made my evening tonight reading that you are doing well.

Re: Stage IV. 3 years NED with Kadcyla/TDM1!
 

Michka,

I'm so very happy for you. Three years NED is fantastic.

Maybe you could switch to something less toxic, such as Herceptin and Perjeta, or just go off treatment for a bit and see what happens.

I dream of taking a treatment break, but first my friend NED needs to come back and stay for awhile.

Re: Stage IV. 3 years NED with Kadcyla/TDM1!
 

Michka, Merci a Dieu! Felicitations...Je suis toute a fait heureuse! Bravo Kadcyla.....Ceesun

Re: Stage IV. 3 years NED with Kadcyla/TDM1!
 

TDM1 started working for me by my first check up and 2nd infusion In March and still working as of today 6/12/15. ;) not long but working.

Re: Stage IV. 3 years NED with Kadcyla/TDM1!
 

So happy to hear Linn!!!