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Old 06-04-2017, 02:24 AM   #1
michka
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Join Date: Feb 2007
Location: Paris, France
Posts: 858
Good and Bad News

Hello to all. Here I am back in the HER2 group. Not that I ever left it but last September a liver biopsy showed I was no longer HER2 after more than10 years. The oncs said that happened after a long run on TDM1/Kadcyla.
I tried multiple horrible chemos and nothing worked. My breathing got worse and worse until even with oxygen I could almost not get up or even speak. I thought it was the end. But my brain was still working so I fought to have HER2 tested again and it is not simple in France. I had a liquid biopsy that searches circulating tumor cells and it came back saying HER2 cells were detected. So we changed chemo and I am back on Herceptin with Halaven. I just had a scan and a brain MRI.The tumors all over are shrinking by 60%, my breathing is much much better. 2 weeks ago another liquid biopsy showed that there were no more detectable circulating tumor cells. (after 2 months treatment) The only bad news is that Halaven made me lose all my hair.
The brain MRI is not good. It shows that I have even more micro mets. (Around 1mm mets).
I have no symptoms.
The only solution seems to be WBR but when I read what the patients say about the cognitive side effects I am frightened. Is it worth having a few more months to live if you cannot speak well, think or balance? If you had WBR tell me what you think please. Is "hippocampus saving" current in the US?
I will try to postpone WBR as long as possible. But is this a good idea?
I would like to try going back on Kadcyla since my brain blood barrier is "ruptured" and I read of some rare cases where it worked. But I want to continue herceptin Halaven a few more weeks before since I have shrinkage for now.

I must admit that I am very down.
Love to all.
Michka

PS: An information I want to share that can help others. Last fall, a tumor in the muscle of my eye was detected. I had it treated by Cyberknife. It was not the recommendation of many Drs I saw here in France but I did it anyway in a new Cyberknife center in Paris. The last brain MRI shows no trace of it anymore. It took a few months to completely disappear, but it did.
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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
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