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!!!
|
All times are GMT -7. The time now is 06:23 AM. |
Powered by vBulletin® Version 3.8.7
Copyright ©2000 - 2024, vBulletin Solutions, Inc.
Copyright HER2 Support Group 2007 - 2021