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michka · 03-13-2015, 07:21 AM

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

03-13-2015, 07:21 AM	#1
michka Senior Member Join Date: Feb 2007 Location: Paris, France Posts: 858	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 __________________ 08.2006 3 cm IDC Stage 2-3, HER2 3+ ER+90% PR 20% FEC, Taxol+ Herceptin, Mastectomy, Radiation, Herceptin 1 year followed by Tykerb 1 year,Aromasin /Faslodex 12.2010 Mets to liver,Herceptin+Tykerb 03.2011 Liver resection ER+70% PR- 04.2011 Herceptin+Navelbine+750mg Tykerb 06.2011 Liver ned, Met to sternum. Added Zometa 09.2011 Cyberknife for sternum 11.2011 Pet clear. Stop Navelbine, continuing on Hercpetin+Tykerb+Aromasin 02.2012 Mets to lungs, nodes, liver 04.2012 TDM1, Ned in 07.2012 04.2015 Stop TDM1/Kadcyla, still Ned, liver problems 04.2016 Liver mets. Back on Kadcyla 08.2016 Kadcyla stopped working. mets to liver lungs bones 09.2016 Biopsy to liver. no more HER2, still ER+ 09.2016 CMF Afinitor/Aromasin/ Xgeva.Met to eye muscle Cyberknife 01.2017 Gemzar/Carboplatin/ Ibrance/Faslodex then Taxotere 02.2017 30 micro mets to brain breathing getting worse and worse 04.2017 Liquid biopsy/CTC indicates HER2 again. Start Herceptin with Halaven 06.2017 all tumors shrunk 60% . more micro mets to brain (1mm mets) no symptoms