Good and Bad News

[michka]

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.