Ibrance stopped working, going on tamifloxin. Anyone with this type of experience? Did tamifloxin work for you? Side effects?

[Southside25]

Tamifloxin experience

[Hazelgreen]

I'm assuming that you mean tamoxifen which I took for two years (2019-2021) without any noticeable side effects beyond the fatigue that MBC gives me. I did very well during the first year on 40 mg of tamoxifen daily. However, my oncologist insisted on my switching to 20 mg thereafter, and this led to progression during the second year. As a result, I am currently taking letrozole and ribociclib.

Please note that I had no side effects when I took tamoxifen 20 mg as adjuvant treatment for five years after being diagnosed with early breast cancer in 2006. However, I realize that many other women stopped tamoxifen because they didn't like its side effects then.

I hope tamoxifen works well for you. Perhaps ask your oncologist to read the European studies on dosages.

Best wishes,

Cindy

[Southside25 in reply to Hazelgreen]

Yes, I did mean tamoxifen. She put me in 20mg; I'll definitely ask her why the smaller dose. She wants me to to on Piqray (sp?), but I'm afraid of the side effects. It does give me another option, however.

As Mel Brooks wrote in a song: "Hope for the best, expect the worse".

[Hazelgreen in reply to Southside25]

Hello again,

The 20mg dose is the one most commonly used. However, both the 20 mg and the 40 mg doses are specifically approved in the USA and all provinces of Canada except my province. My guess is that your oncologist won't give you a hard time about trying the 40 mg dose if that is what you wish to do.

It is hard to know what will work best in each individual case. I have extensive mets throughout my system, and I'm 76 years old. I tried 40 mg successfully but didn't know whether 20 mg would also work (it didn't). I'm now on a targeted drug (Kasqali). I don't know yet whether it is working.

You already have experience with a targeted drug (Ibrance). You are probably younger than I am, but likely have the same type of breast cancer. You should have a discussion with your oncologist about your best strategy regarding tamoxifen. I don't know what other meds you may be taking, but the advice for all tamoxifen users is to "avoid concomitant use with moderate to strong CYP2D6 inhibitors".

You and your oncologist may find the following research article of interest:

Oncologist. 2016 Jul;21(7):795-803. doi: 10.1634/theoncologist.2015-0480. Epub 2016 May 25

I'd be interested to know what you decide, and how you make out.

Best wishes,

Cindy

[Cureforever]

Hi, I had tamoxifen for three months after the bone Mets progression on ibrance and Faslodex and it did not work for me. I had a progression to the liver while on tamoxifen. I am on Xeloda now. I did not have a scan yet. Hope it will work for you. I had mbc in 2019 and tamoxifen was my fourth line of treatment. I heard that it helps some people but I was not among them.

Best,

Marina

[Fiercefighter13]

Hi there, I hope it works well for you!! I took Tamoxifen for 7 years after being diagnosed with stage 1-0 and having a double mastectomy. I had no side effects at all. Unfortunately, my cancer got around it, and I ended up with extensive metz. I have heard of other women who have had some side effects, but I guess I was lucky in that sense. Sometimes I wonder if it worked at all for me, since I had no side effects and the cancer kept growing? This is a tough disease, but we have quite an arsenal of medications. I really do hope Tamoxifen works for you and you have no side effects!

[Thredbo2]

I changed from Letrozole and Ibrance to 20mg tamoxifen 4 months ago following progression of a solitary bone met in my femur. I took it for five years after my primary diagnosis with few side effects (hot flushes mainly) but this time it took me a couple of months to get used to side effects including tiredness and stiffness. Feeling ok now but unfortunately it is not working so I am exploring the options of further radiation or a full hip replacement. Still on Xgeva. Hope all goes well with you.

[SpongebobMom]

I took Tamoxifen (or TamoxiFUNK as I called it) for 5 years post eBC dx. Dr wanted me to stay on for another 2 but I'd had enough by then...it made me feel dull & slightly depressed.

I'm currently taking Ibrance & letrozole & the letrozole doesn't affect my brain like tamoxifen did, it is hell on my joints.