One year of TDM1. NED!
 

I am still sad and shocked by the lost of some of our beautiful HER2 sisters so I was hesitating to post.
But then I thought I had to share hope with the sisters who are in trouble!
Like our Dear Chrisy who gave me hope and strength to fight for TDM1.
I started TDM1 a year ago and now I am NED. I had more than a dozen of tumors in my lungs, liver, thorax abdomen.
TDM1 has not been easy for me but who cares? I only hope it will work forever and I know how lucky I am it is working for me. They lowered the dosage the last round for the second time so I could feel better. I am a little afraid because nobody knows what the minimal dosage is but it is true that my pain in the chest is gone.
I remember trying to visualize during my first TDM1 infusion that it was going to blast every stupid cancer cell. And it did.
I hope it will keep me NED, I hope it will bring other sisters to NED, I hope it will be available fast all over the world and I hope it will be successful in the neoadjuvant trials.
Love to all. Michka

Re: One year of TDM1. NED!
 

WOW! I am SO happy for this post that you have come back to NED.

It has been a difficult road, but what great results. It just keeps proving that for some people it is a wonderful drug. Keep in mind that Chrisy spent three years on T-DM1 and started in the early years of the trial.
Hoping that with more and better information, you can do even better.

Re: One year of TDM1. NED!
 

Congratulations !! Keep up the great work !! I am very happy for you.
This is certainly wonderful and hopeful news for other people on T DM1 and for people hoping to get the drug in the future.

Re: One year of TDM1. NED!
 

Yea, Michka! Thank you for the wonderful news! We have had a drought of it lately.

Re: One year of TDM1. NED!
 

Yay Michka!!!

I'm so happy for you!!! Congratulations!
Thanks for the great news...ALWAYS welcome here! :)

Sending love and light across the miles...
Denise

PS - I can almost see Chris doing the happy dance for you from above!

Re: One year of TDM1. NED!
 

Oh wow! I remember Howard things were for you before you started! Stories like this give us all hope. We never know when something wonderful may come our way and grab the opportunity to reach for NED. May your dance together be long and slow.
A xx

Re: One year of TDM1. NED!
 

I'm so happy to hear about this for you! But, you say that it hasn't been easy - what do you mean by that? TDM1/Kadcyla will be my next drug and I'm having such a rough time with Gemzar that I am not sure I want to do another rough one. My doctor said TDM1 is easier than Gemzar but I'm also sensitive (which surprised me).

Not sure I can live the rest of my life on this drugs and struggling so much so unlike you, I am not sure all is worth it.

What are your SEs?

Re: One year of TDM1. NED!
 

Congratulations~that is wonderful news. I hope it brings similar results for many, many of our sisters, and continues to work for you forever. Big hugs..and many prayers for continued NED.

Re: One year of TDM1. NED!
 

BRAVO!!! Michka, Vous avez bien fait! Je suis tres heureuse! You deserve this, my dear, as we all do....praise God and your medical team and I hope many others reach NED as well!

Re: One year of TDM1. NED!
 

Michka, I am soooo happy for you!!! Hugs, hugs and more hugs!!

Re: One year of TDM1. NED!
 

Fantastic news well done to you may the dance be very long xx

Re: One year of TDM1. NED!
 

Michka! Thank you thank you for sharing your wonderful news. Long may you be NED!
Best wishes, Marie

Re: One year of TDM1. NED!
 

Great news Michka.
Kadcyla has now also been approved for Swiss use.

http://www.foxbusiness.com/news/2013...for-swiss-use/

Re: One year of TDM1. NED!
 

Michka,

I am so happy to hear your good news. Best of luck to you as you continue your therapy.

Hopeful

Re: One year of TDM1. NED!
 

So pleased to hear your good news. Thank you for posting x
Ellie

Re: One year of TDM1. NED!
 

Congratulations ! Lorrraines abdominal CT results from yesterday are Clear !! chest pending, but her chest has never been a problem, so we Press On , next scans in Sept.
Lorraine had to reduce dose to 3.0 long ago, mid 2011, and had one tumor left then . that disappeared by Nov. 2011. ned since.
I understand the hesitation to post , but Chrisy and the others , incl our dear friend Jay, would be sooo happy for you. It gives survivors hope. we must push to get t dm-1 appr. in combo w/ other drugs , and to get perjeta appr for stage iv. and for the next new drug, in early trials even now. God Bless.
we are talking with our new Senators office , Eliz. Warren . Shes on the HELP Comm., overseeing This FDA, hopefully these new women in Congress will hear us ! and do something !

Re: One year of TDM1. NED!
 

Felicitations chere Michka!
wonderful news, je suis tres heureuse pour toi!

Mange chocolate, c'est bon pour toi!

all the best
caya

Re: One year of TDM1. NED!
 

Congratulations Michka ! We need positive stories !

Re: One year of TDM1. NED!
 

wow Michka this is fabulous, fabulous news! I am so happy for you. Stay NED and have a wonderful summer with your family and friends.
Maybe sometime we can meet up.
take care
love sarah in the Var

Re: One year of TDM1. NED!
 

Wonderful news Michka! may it keep working for you, and may the S-E's diminish!
Best wishes..... Pam

Re: One year of TDM1. NED!
 

I am very happy for you. How many months did it take before they used the word Ned? I have had 11 treatments and it has not been easy. I have a lot of collateral damage issues I am dealing with so I never know exactly what to blame. But I am pretty sure the joint/muscle pain is Katcyla's fault. I have gone to taking a narco first thing in the morning to get going. Have you experienced pain with Katcyla?

Re: One year of TDM1. NED!
 

Michka,
Thank you for posting this wonderful news. We all needed it about right now.
I am very very happy for you !
Best!

Re: One year of TDM1. NED!
 

I thank you all for your nice and so encouraging messages! It is so wonderful to have this group to share the good and the bad things on this journey. I have to thank Joe and Christine once more.

CoolBreeze, I posted my SEs on the TDM1 side effects thread but don't get me wrong: I really risked my life when I refused all other chemo and went for the TDM1 trial because like you, at the time, I just knew my body could not take the old chemos. I suffered so much with many treatments. TDM1 has been difficult the first rounds but NOTHING to do with FEC or Taxol or Navelbine for me. In the beginning I had so many tumors dying at the same time I figure my body was reacting to that. Don't forget that during the time I had to wait to get in the trial, a tumor blocked a bile duct and I had to have a stent put in. So I started the trial with my liver being at the limit and I was in a poor state. For me the worst SEs were nausea (I have worse nausea than many on all chemos) chest pain, dyspnea and fatigue. I also have pain sometimes but I can control it very easily with Tramadol and it only lasts a day or 2. One year later I am still very fatigued and have dyspnea but much less than in the beginning. Since they lowered my dosage the pain in the chest dsiappeared. So YES Coolbreeze. Go try it. I just add for you that Herceptin never worked for me before and that I am ER+.

Nancy L, I cannot tell you exactly when I became NED because the Drs were hesitating with my liver. I had resection and RFA so what they took for tumors was in fact scars. I think it took 4 or 5 months. Sometimes you keep very small scars that you cannot rule out without a Pet/scan or a MRI.
I had and still have pains. It comes towards the second week, can be very strong all over my body but I control it fast with Tramadol and it only lasts one day or 2. What are your last scan results? It seems it can be long for some, almost a year and real fast for others to become NED.

Phil, I am so happy Lorraines's CT is good! I follow her through your posts and it helped me so much to go for TDM1. I am now on a 3.0 dose also. There is a long way to have TDM1 announced here in France. I heard that the lab is trying to get Pertuzumab approved first and that they have not even filed for TDM1 approval! It might be 2 years...

I have a question for all who have been on TDM1 for more than a year: I have control scans every 6 weeks. I feel it is too much. I asked to have them every 12 weeks but after saying yes they said no because they just lowered the dose. Any information could help me.

Love to all. Michka

Re: One year of TDM1. NED!
 

Thanks for sharing the wonderful news, Michka. I'm so happy for you. This will give so many of our sisters so much needed encouragement!

Re: One year of TDM1. NED!
 

Hey! I'm late to the party but let the celebrating continue . . . That is such awesome news. I remember you posting about the liver and stents. Truly a miraculous recovery. I am so happy for you. Yeah!!!

Re: One year of TDM1. NED!
 

michka , we are so happy for you, Lorraine too had stents in bile duct, kidney. cancer there so small couldn't be seen on scans, now all gone !
Lorraine cut back on scans to every 3 months last yr. that was 2nd yr of tx, about 6 months ned. since reaching one yr ned this past Nov., 2012, she is on a 4 month schedule. tumor mrkers are checked very regularly. she is still on the extension or maintenance study , for those who have finished expanded access or trials. the scan schedule was negotiated betw. our doc and Genentech , based on good , sustained response. 6 weeks seems much too frequent for 0ne yr ned.

Re: One year of TDM1. NED!
 

Michka,

I'm so very happy for you. Thank you for giving us the good news.

I just started TDM-1, with just one dose. I don't think I've had any side effects, or at least not much. I like it better than Tykerb.

It turns out I'll be 10 days overdue for my second dose because I'm going on a trip. It's always about balancing, isn't it?

I'm especially heartened by stories of people with a lot of cancer burden who got to NED. I've never had much cancer burden, but haven't spent much time dancing with NED. He keeps running off.

Thanks again for the good news, and best wishes to you.

Re: One year of TDM1. NED!
 

I'm so happy for you and your family Michka! Gods blessings to you