Hi everyone. Unless I am being really stupid, this triple negative secondary area is one single thread rather than being able to start new topics or search for them. Is that right? Either way, I am very glad to have a group away from the hormone receptive people. Sadly, I started off as one but after treatment 1 (palbociclib and fulvestrant) failed after around 18 months and 2nd line (exemestane and everolimus) not working at all, it was discovered I had transitioned to triple negative. I started nab paclitaxel in August and was happy to have recently been able to start pembrolizumab. I had my first dose three weeks ago. On 19th November, I had my routine scan and got the result yesterday. Nab pac is not working. I have more liver tumours and the ones I had are bigger. My oncologist advised that Trodelvy was my next best option. Last November, I was being told that the one spinal tumour I had was showing more improvement. This November, I face having raced through treatment lines and become triple negative, developing mets in my pelvis and multiple mets in my liver. I have basically had no treatment working for between 8 and 12 months, depending on when I changed fro ER+ to TN (biopsies have previously not been possible). I am beyond terrified and feel utterly crushed by yet another setback. I read all about Trodelvy on the BCN website and how it ācould give more months for people to spend with their loved onesā. Of course, I am so very grateful for all the treatment options available but months? Is this where I am now? I am 59 and in no way ready to contemplate the end of my life. How do you cram what should have been years, the years in which you carefreely planned to grow old with your loved ones, with a husband with whom you are so happy and were so, previously, full of dreams and plans, into a few months? And Trodelvy fills me with dread. It sounds such a harsh drug My fatigue is already pretty debilitating and the thought of feeling even worse is very difficult to imagine. I feel like my world is shrinking before my eyes. is there anyone who has been in a similar situation, especially with the change from hormone positive to triple negative? Any uplifting, positive experiences of Trodelvy would be so welcome. I do apologise for the outpouring. I am feeling so raw and just needed to reach out to people who just āknowā. My love to you all xxx PS I asked my oncologist āis this really bad?ā He replied that it was ādisappointingā that the treatment hadnāt worked but not before looking at the floor. I canāt help but think that look possibly said more than his words.
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Hi Hattie,
Your outpouring is totally justified and no need to apologise, that is what we are all here for.
I started off hormone receptive but now triple negative. Iām 53 and like you, adjusting to the loss of the future I thought I would have.
I havenāt had Trodelvy, but other people here have so hopefully someone will reply.
Sending you love.
Lisa x
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