HER2 Support Group Forums - View Single Post - Has anyone been on TDM-1 for more than 2 years?

michka · 02-20-2014, 02:29 AM

Hi Phil, thank you for sharing. I am sorry Lorraine has this new se. I hope the dose reduction will stabilize the situation. I am happy they told you it was not a big issue. Did they explain why this happens if there is no cirrhosis and a good outflow? Maybe they do not know.
I am on round 33 ( 22 months). My liver counts keep increasing and increasing. I asked several times about liver toxicity but got no answer from the oncologists in the clinical trial dept.
How were these varices found, With what kind of exam? How can I check that?

I have been wondering for months how long I will be able to stay on TDM1 without toxicity. My breathing is much better since I had a treatment with a powder cortisone inhaler. It seemed to have fixed a chronic inflammation of the small bronchi (is that the right word?). Now I do not need it anymore.
I have digestion problems that led me to take out all fat out of my diet. Liver?
I am still exhausted, but my last scan last month was still good so I cannot complain although I dream of stopping chemo.

Michka

02-20-2014, 02:29 AM	#18
michka Senior Member Join Date: Feb 2007 Location: Paris, France Posts: 858	Re: Has anyone been on TDM-1 for more than 2 years? Hi Phil, thank you for sharing. I am sorry Lorraine has this new se. I hope the dose reduction will stabilize the situation. I am happy they told you it was not a big issue. Did they explain why this happens if there is no cirrhosis and a good outflow? Maybe they do not know. I am on round 33 ( 22 months). My liver counts keep increasing and increasing. I asked several times about liver toxicity but got no answer from the oncologists in the clinical trial dept. How were these varices found, With what kind of exam? How can I check that? I have been wondering for months how long I will be able to stay on TDM1 without toxicity. My breathing is much better since I had a treatment with a powder cortisone inhaler. It seemed to have fixed a chronic inflammation of the small bronchi (is that the right word?). Now I do not need it anymore. I have digestion problems that led me to take out all fat out of my diet. Liver? I am still exhausted, but my last scan last month was still good so I cannot complain although I dream of stopping chemo. 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