3rd line choice - need help thinking it through
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Hi, Stage IV friends. I learned this week that I have progressed and need to switch treatments. First line was Ibrance + Faslodex, which worked for about 7 months. Second line was Xeloda, which held for about 9 months. My oncologist is recommending Taxol next, though in the past he talked about everolimus (Afinitor) + letrozole as the probable 3rd line. When I asked what had changed his mind, he says he's worried about my left hip (I have bone-only mets, except for some found in my ovaries when they were removed last year) and says Taxol will work more quickly. He also points out that Taxol is likely to work well since I haven't had such heavy-duty chemo before (only Xeloda, an oral chemo).
For my part, I have wanted to avoid IV chemo and still feel deeply reluctant to go that route (in part because I saw my mother go through it for Stage IV and it not only didn't help, she was truly miserable). I'm inclined instead to try Afinitor and letrozole (which again he had been proposing until just recently), along with rads to the hip and getting an orthopedic's take on whether the hip can be stabilized or something (there's no immediate risk of fracture there, just "innumerable" lesions in the bony pelvic ring, among many other spots in my vertebrae, legs, sternum and shoulders).
My onc is great and is OK with my going this route. Deep down, I am too. But I'm also very nervous, and find myself for the first time feeling afraid of the pain that I've been increasingly feeling, where before it was more just something to deal with.
I'd LOVE to get feedback from this wise, well-informed group on what seems the best course.
Thank you!
P.S. My onc also believes we should hold off on a clinical trial until we've exhausted the "known" treatments, but there too I wonder.
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Seagan, this is tough, I just went through it, and there is no right answer. I was deciding between Taxotere (as I am allergic to Taxol) and Afinitor/Aromasin. I went the Afinitor/Aromasin route - my MO recommended it whereas I was tentative. He mentioned that there is a window to use it as one can't use it when one's liver counts are compromised. I figured I didn't want to lose the option of that treatment by waiting too long. If you don't have liver mets, that might not be an issue for you. That being said, sadly, Afinitor/Aromasin didn't work for me. It did slow the pace of my progression but never actually worked. I would say that during the 3-month time I hung out on the Afinitor/Aromasin thread, it didn't seem like many had luck with the combination. However, again, if you are limited to bone mets, then you are probably a better candidate than most. In hindsight, for myself, Afinitor/Aromasin would have been better to try as a maintenance medication when I mets were already stabilized and under control by chemo. However, there is no guarantee that would have worked. I went onto Abraxane after Afinitor/Aromasin and will see next month whether it is working. There is no wrong answer and I hope that whatever you choose, it works to get your hip/pelvis bones shored up. I assume your are on XGeva or a bisphosphonate for your bones as well?
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Everybody is different, but here's my 2 cents worth. I've had no luck with hormonals or targeted therapies: Tamoxifen, Faslodex, Talazoparib and Ibrance were all duds within 3 months. I've had very good results from several chemos (Xeloda, Doxil and Taxol) and found them all very doable. I have done in total over 4 years of chemo. I understand it's a big step movings to IV chemo and getting a port. I was upset about this as well because it seemed like something only sick people got. Looking back, the port doesn't seem such a big deal and from a practical point of view makes life much less stressful and more comfortable. Good luck with whatever you decide; there's no such think as a wrong decision in your situation.
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Wow, such valuable input already - thanks so much. Re the Xgeva question: yes, I get that every 3 months. Was supposed to get it today, in fact, but because a root canal (!) may be in the cards soon, we're holding off for a couple of weeks.
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I would go with your doctor's advice as his hunches may make more sense for you. But this may be my own bias as I lucked out on IV chemo and found it doable. A port will make your life easier as scoobie mentioned. Good luck on the root canal.
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Seagan, I replied to you on the Xeloda thread. I've been through exactly this when Faslodex/Ibrance stopped working. Somewhere on that thread I wrote a long exegisis on what the options where and what to do.
I tried A/A. It didn't work for me either. But I was taking Ibrance as well -- may have caused the SEs that made me stop after three months. Then on to Xeloda.
This is a hard decision. But do remember that it's not a 'final' decision. If you don't like A/A you can stop and switch to Taxol. Same thing if you start Taxol.
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So sorry for your progress, my mum was on letrozole, after xeloda, after faslodex. Now she is on CMF (iv chemo), her onc put her on taxol but she is allergic. She is on CMF for 8 months and she had much more SE on the previous drugs. Good luck!
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As to the clinical trials, I have learned that you can be ineligible for having had "too many" lines of treatment. I have been refused from three trials because of too much treatment. Just, FYI.
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I have been on weekly Taxol for over 4 years. I find it a very doable chemo. I work 5 days a week and keep pretty active. I did the IV Taxol for just over 2 years then I started on the Oral version called Oraxol which I’ve found even easier to tolerate. It is still a trial drug but maybe worth looking into.
Good luck with whatever you go with
Shaz
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