Topics here are started by members with a Stage IV/Metastatic Breast Cancer diagnosis, but open to all members to contribute to discussions. Please note that there is a separate forum, Stage IV/Metastatic Breast Cancer ONLY, where topics are open only to those members.
Feb 1, 2020 10:45PM
I just joined this forum today. Asking questions in regard to my 43 year old daughter Carol. I am her father and my worst subject was English, so please excuse my bad. To make matters worse I am in a dark living room made in hospital room. Both my wife and daughter are sleeping, My daughter was diagnosed stage-3, January 2018. She had dense breast, reason given for no early detection. She was going to MSK and told she was clear after one breast removed and many lymphs nodes, all cancerous. She also had chemotherapy first , (no shrinkage) followed by radiation. Returned to work on anastrozole and fulvestrant, until May 2019 when she developed chronic cough, Than another pet scan done showing it spread many vitals including eyes, brain. MSK did not rush to change anything, and she went to Penn Med. They changed to Piqray and Fulvestrant and treated eyes + brain with whole head radiation. However progression below head continues. Piqray and Fulvestrant were stopped and started gemcitabine several weeks back and was hospitalized, severe stomach pain and swelling. We are seeing a doctor at Mount Sinai on Tuesday who is suppose to be top notch. However his email indicated, Carol's Guardiant 360 test shows hard cancers to control. It is a mutation GATA3-. On the test itself they show no drug to take for it. It may be to her advantage to take off label drugs like Pancure. Her oncologist mentioned the hospice word to us while she was hospitalized. We have now been home a week and she has been pretty good until we started chemotherapy yesterday. She is ER+ HER2 negative Pr negative I would be very grateful for any information anyone has to share,
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Feb 2, 2020 11:58AM
Oh, we are so sorry to hear all you and Carol are going through. We certainly wish we had a magic answer. Fortunately she is getting treatment and recommendations from top-tier cancer centers. We are here to support you. Please keep us posted.