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Faslodex experience?

zipmonk
zipmonk Member Posts: 15

I have been on faslodex for 2.5 months now and I still have some increase in a pleural effusion that I have had for over a year now. It has been small and stable up until august so they switched me from Letrozole/Ibrance (which I was on for 6 years). I am having my lung drained today but I am worried it has increased.

Am I being impatient? I also just had covid 3 weeks ago and am wondering if covid could have increased the fluid.

I have also been told if you do well on one line you are likely to do well on the next one. Is this true? Am I likely to get 6 years on Faslodex?

I'm 59 and my husband left me after his affair so I want a few more years of a good life before I go. My daughter is 19 and struggling and I want to get her settled as well.

Any information is greatly appreciated.

wishful thinking

Comments

  • intolight
    intolight Member Posts: 2,098

    @zipmonk I just saw your post after searching for a Faslodex thread. I have been on Faslodex for 18 months now combined with Verzenio. Verzenio works like Ibrance and I had four years on Ibrance. My mets are stable…not gone but not growing so I'll stay on this combo. I was told that since I did well on Ibrance I could possibly do well on Verzenio, so that is the switch we made. We didn't discuss whether it worked for similar meds of non-hormonals like Femara and Faslodex so I can't help you there.

  • gailmary
    gailmary Member Posts: 417

    Zipmonk, yes you could get 6 years.

    I was on Femara 4 yrs after first dx. 4 more years later with bone met found I took again for 2 yrs WITH faslodex. Then dropped Femara and now on just faslodex total 6 yrs. Dr said I could go another 6 before progression!!!

  • anx789
    anx789 Member Posts: 226

    @intolight , why did you switch from Ibrance to Verzenio, did you have progression?

  • cure-ious
    cure-ious Member Posts: 2,705

    zipmonk, In clinical trials, taking Faslodex alone after Ibrance-Femara is not very effective, most get just 2-3 months before progression. As IntoLight says, it'd be well worthwhile to try adding Verzenio- alternatively ask for a genetic test like Guardant 360 to see if there is an ESR1 mutation that Faslodex can't handle. But try adding in Verzenio would be a great idea given how long you went on I-F..

  • intolight
    intolight Member Posts: 2,098

    anx789, yes, after four years on Ibrance I had progression. So we switched to Xeloda, which only gave me a few months, then Affinitor, which after a year turned into a nightmare and landed me in the hospital. After a four-month break on Femara alone, I switched to Verzenio which I have been on a year and a-half. It has been quite the ride!

  • vlnrph
    vlnrph Member Posts: 474

    I had nearly 5 years on Faslodex, mostly with Verzenio, for bone metastases. That time included several months after hepatic lesions were seen, while attempting to tolerate PIQRAY. Unfortunately, progression continued while estrogen receptor sensitivity fell to 50% so last summer I began IV chemotherapy which has succeeded in shrinking my liver tumors.

    Receiving bilateral fulvestrant injections every 4 weeks for such a long period resulted in scar tissue that started showing up on PET scans. Radiologists observing those areas made comments however I didn’t mind since it was working!

    Hopefully zipmonk will return here to let us know how she is doing. The major life issues (divorce, teenage daughter) are an enormous additional challenge to having advanced cancer. I really can’t imagine handling everything like that but, on the other hand, we learn to be resilient and realize our strength as the need arises…

  • zipmonk
    zipmonk Member Posts: 15

    Thanks everyone - PET scan showed some growth some stayed stable and some shrunk. My oncologist has decided to switch me to xeloda because she seems to think AIs no longer work for me. She said adding ibrance to fulvestrant wasn’t indicated.

    So I am due to start xeloda Friday but I wrote my oncologist to ask about adding Verzenio to the fulvestrant first based on your recommendations. I know my onc is good - she’s the lead at UNM cancer center so I trust her but maybe there are things she doesn’t know.

    in the meantime my pleural catheter is working well but hurt so much getting it put in! The amount of liquid produced has increased dramatically and that worries me and might be why my onc is heading for xeloda.

    thanks so much for your help and more feedback is greatly appreciated!

  • sunshine99
    sunshine99 Member Posts: 2,479

    I had my first injection today. Am on my phone and it’s late, so I’ll check back tomorrow. Progression found last week. Lots going on.

  • zipmonk
    zipmonk Member Posts: 15

    My onc called me to explain the xeloda decision - we need to act fast to get the cancer in my lungs under control. After a while on xeloda - if it’s effective at shrinking this stuff in my lungs (creating 300 ml of fluid a day) - we may go back to AIs again. Her explanation makes sense to me as I’m having symptoms- she said for someone with fewer symptoms the Verzenio faslodex combo makes sense. I’m so glad she knows what she is doing. Always can explain to me the latest research and her rationale.

  • sunshine99
    sunshine99 Member Posts: 2,479

    So, I've been off Ibrance since July, due to the swallowing issues (which turned out to be more mets.) I just stopped the Arimidex and had, as I said, my first Faslodex injection yesterday. Left side a tiny bit sore, but no other SEs, so far. Nurse had the vials warming up in a couple of heating pads when I arrived. The left side hurt more than the right, but she had me rest my knee on the chair and then injected into that side.

    I'm not sure why I was switched from Arimidex to Faslodex, but I'm in a bit a muddle right now with this news of progression. Will see the RO tomorrow and have an appointment with Genetic Counselling in December. They sent a sample off to Guardant 360 to check for new mutations. The last sample from November of 2021 showed an ATM mutation.