Looking for michka

[StephN]

Glad to hear Michka has surfaced. She has learned a lot about navigating the French medical system to get what she wants. Sure hope she can get back on something anti-HER2.

She lives in the greater Paris area, where she has major medical institutions to bang on their doors!

Hope to hear some good news from her situation.

[michka]

I first want to thank you all for still thinking of me. It brings tears to my eyes. Please forgive me for not giving news. It is not very good so I do not like sharing it.
After Kadcyla stopped working and a liver biopsy showing I was no longer HER2 I had CMF chemotherapy (methotrexate, cyclophosphamide and 5FU). with Afinitor (everolimus), Aromasin and Xgeva. Then I switched to Gemzar Carboplatin with Ibrance (Palboclicib) and Faslodex and now I am on Methotrexate Carboplatin and Ibrance/Faslodex. It does not seem to be working. I now have oxygen to help me.

In September a brain MRI showed I had a small tumor in the muscle of an eye. I did Cyberknife in october and that worked. Then in January another brain mri showed I have 30 micro tumors in my brain.
The difficulty is to take care of the lungs (lymphangitis) and the brain at the same time. The oncs estimated the brain could wait the tumors being very very small and wanted to give a chance for the chemo to work for my lungs before doing WBR to the brain.
I wanted, since September, to have "genetic testing" and I kept asking all the time if some tumors could be non HER2 and some HER2. I ended up by getting an appointment in Institut Gustave Roussy, the biggest cancer and research hospital in France for this testing and maybe immunotherapy. They said it was not unusual to loose the HER2 factor after a very long period on TDM1/Kadcyla. When I went there I did not know about the brain tumors yet and there was "only" the lung problem and I was not yet on oxygen. They threw me out saying that they don't do testing for people who have less than 3 months to live and told me to go on Gemzar/Carboplatin. You can imagine how I felt.
I searched and found labs that could do the testing in Belgium but I also found a way to get the testing done by another research team in France and I asked if there was a way to "fast track " the HER2 factor. They are testing a solid biopsy from my liver and did a liquid biopsy. The problem is that all this takes time. 6 weeks. But the "good" news is that they called my onc to tell him that the first results of the liquid biopsy showed HER2 cells. I am still waiting for the full results.

I am seeing my onc on Tuesday. So what now? back on Kadcyla? I never had Pertuzumab but will they give it to me? Anyway, an anti HER2 treatment is worth trying again. Any idea is welcome.

So you see, I am in a poor state but I keep hope that the HER2 factor came back It gives me more options to gain a little time.

Love to all.
Michka