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