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Dec 12, 2020 05:09AM
Dec 12, 2020 03:13PM
I am new to this thread and will greatly appreciate your guidance and support as a new brain metszer.
I have been battling MBC for four years now and I blew through my treatment options and I'm literally hanging on by a thread! I was diagnosed de novo while pregnant and had extensive liver and bone mets at the time of dx. My mets have been growing and shrinking with treatments but now I feel I am back to square one plus some.
I was on an immunotherapy trial (TAPUR) for the past 7 months but it did nothing for me. The 3 CT scans I had during that time led me to be believe I was stable or minimally progressing in liver but PET and MRI showed an explosion in mets in liver (about 15) and bones (extensive to major bones in my body). I also found out that now I have brain lesions! Seriously what are CTs even good for? If I was on Vit C it would have been probably better 😂 Quality of life was not bad though the past 7 months until suddenly it wasn't and 💩 hit the fan very quick. I experienced severe bone, leg and back pain and now possibly looking into another femur/hip stabilization surgery.
I'm really bummed by it all especially the brain mets part! All of sudden, I feel like I have reached a whole new level in this $#*& whole. I cried a lot for a couple of weeks and unfortunately couldn't shield my little ones from the heartache this time.
I'm ER/PR positive and Her2 equivocal for reference. I knew immunotherapy for me was a long shot but since I tried almost everything I needed to explore out of my comfort zone.
I did do Y90 and ablation before when my liver met load was small but obviously it all comes back with time. I have been on several lines of treatment: Ibrance/ Latrezole, Abraxane, Xeloda, Doxil, Verzenio/ Faslodex, Lynparza, Halaven, Gem/Carbo, Immunotherapy study (Opdivo).
Now I just started Afinitor/ Aromasin... which I have been putting off due to side effects but beggars can't be choosers. I did develop the ESR1 mutation and I might possibly switch to Faslodex again instead of the Aromasin.
My F1 (2019) and Guardant blood test (2020) do not show a lot of helpful info. I have the somatic BRCA mutation, FGFR1 amplification among a few other things that probably are not targetable at this point.
My MO said if my first blood test after Afinitor showed an increase in TM she'll switch immediately to a different treatment. But I'm not sure that's a good idea! I really have very limited options.
I will be going in for gamma knife on Friday but I'm really scared of it all! The procedure, the mask/ cage, the side effects, possible deficits.. I am a mess!
I apologize for the long long post! I know that many of you have been braving this territory for a long time and I would greatly appreciate any insights, words of wisdom and prayers!!!
9/15/2016, DCIS/IDC, Right, 1cm, Stage IV, metastasized to bone/liver, ER+/PR+, HER2- (FISH)
10/2/2016 Femara (letrozole)
10/15/2016 Ibrance (palbociclib)
4/1/2017 Abraxane (albumin-bound or nab-paclitaxel)
12/9/2017 Xeloda (capecitabine)
2/13/2018 Doxil (doxorubicin)
5/15/2018 Faslodex (fulvestrant)