Stage IV ER+ - How long on each hormonal therapy?

Options
dorimak
dorimak Member Posts: 147

I was diagnosed three years ago with mets in nodes under my sternum and in my lungs. I'm 90% ER+,10% PR+, HER2-. PI went close to two years progression free with Femara and IBRANCE. Got just about 4-5 months on Faslodex and now two months on Afinitor and Aromosin. Next step is Xeloda which I'm not looking forward to. My question is as we progress through the hormonal options, does the progression free survival reduce? I talked to the pharmacist today and the median progression free is just five months. Looking for hope that while some therapies fail after a short time, that there has bee success with others. On none of my therapies did I experience any regression. Feeling demoralized that I'm starting to circle the drain although I was encouraged to see one lady who was on Xeloda for 12 years! Would welcome some good news.

Comments

  • Cure-ious
    Cure-ious Member Posts: 2,626
    edited March 2019

    Hi Dori, No circling the drain!! Come away from there...

    Have you had recent biopsy and sequencing to check for actionable targets? And how about a clinical trial before moving to that chemotherapy train? That is where you can find immunotherapy combos that might work, such as Abemaciclib with Keytruda (and abemaciclib works on brain mets), or the trial kattysmith is on with Opodivo plus an EP4 inhibitor. We also heard about good results in trial with the Alisertib, which hits AuroraA kinase, which is activated in a great many breast cancer patients, especially those no longer responding to the Affinitor-Alpelisib. Sounds like it is at least time for a second opinion and considering trials, no?


  • dorimak
    dorimak Member Posts: 147
    edited March 2019

    Cure-ious "come away from the drain" LOL I did have two recent biopsies in January. One for the area in the lung that was previously too small to access and one to the original site at the nodes under the sternum. Results came back identical to three years ago. I had switched several months back to this center as they have a partnership with MD Anderson and the they consulted with them on my case and Xeloda was recommended. Not sure what actionable targets means. Is that additional testing? At my prior center it sounded like the path was going to be the same for my particular case Ii.e. Febara+IBRANCE, then Fasloddex, then Afinitor nd Aromosin then Xeloda.. It's almost as if it's the standard of car which is why I'm curious to learn of other's experiences and how long they got from each drug. I did have a friend who passed away after an almost decade long journey with ovarian cancer and she participated in many clinical trials. To be honest based some of her experiences I'm a little nervous until I work my way through the standard treatments although very interested in immunology. I will read up on your list of recommendations and discuss with my MO. Thank you for that.

    In the meantime for others on the standard hormone regimines I would still like to know how long each patient got from each and does it get less as you cyclee through each one.

  • bigbhome
    bigbhome Member Posts: 840
    edited March 2019

    Dorimak, I started out on Faslodax and Xgeva until osteonecrosis settled in my jaw. A potential se of Xgeva. I stayed the course with Faslodax alone for 3 1/2 years. I was then moved to Ibrance/ Letrozole. That lasted for 27 months. I have been on Xeloda for 8months. I will reach 7 years with MBC in May. I can't complain.

    I have always questioned the wisdom of women taking I/L as a first step since I was blessed to get so far on Faslodax alone. Of course Ibrance had not been approved when I started out. One of the reasons I chose to go to Xeloda was I saw a study that mentioned the potential to retry Faslodax with Verzenio. I'm not sure about the Verzenio, though. From what I have seen it can have some difficult se's. Qol is my primary goal. Like Jaycee, (see bone mets thread) my body does not handle drugs well.

    Good luck with your treatments!

    Claudia


  • ZZZAAAZZZAAA
    ZZZAAAZZZAAA Member Posts: 43
    edited December 2019

    my mom after the shot of Faslodex she feeling cold and tired for 6 hours and after she feeling good without pain and again after 4 hours she feeling cold and tired ..........it s normal or what can i help her ?

Categories