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Ibrance Users greater than 24 months

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  • intolight
    intolight Member Posts: 2,180
    edited September 2020
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    Hi Baily. I/L worked for me for four years before progression. Switched to Xeloda. I am in my third cycle (2 weeks on, 1 week off) and my scan taken Wednesday shows NED already, so don't fear your next med. I get PET/CT scan every three months and do not drink anything--just the quick IV for the radioactive solution. I switched to 6 month scans on Ibrance, but first sign went back to 3. Where are you in CAli? I live near the beach in San Diego but avoid it on busy weekends like this one opting for the pool instead to avoid the crowds. I am always happier after Labor Day when the tourists go home.

    I have three kids over age of 30. My daughter and her daughter live with my DH and I as she is in nursing school so we help with the 5-year-old. I am her kindergarten facilitator while she is in virtual school. Glad to chat any time. You can PM me so it doesn't clutter this thread if you wish. Chris

  • karenfizedbo15
    karenfizedbo15 Member Posts: 719
    edited September 2020
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    Bailey, no drink for me either for CT scans, they flush through a contrast IV

    Take a look at the thread ‘my husband, my life, my love, my family, my cancer’ AKA Mel’s living room! That’s where some of us talk about stuff which isn’t always about cancer, but inevitably is. It’s very welcoming and a bit more social.

  • bailey5
    bailey5 Member Posts: 27
    edited October 2021
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    hi all:

    Wow it’s been too long. I’m @ 56 cycles on I/F combo. I cannot believe it’s been 4 years. My Onc says he was @ UCLA & involved with the first trial and knows a woman still on Ibrance now for “10” TEN YEARS!! I don’t know other details; but he says: “there’s no reason to think that could be you & the other woman (from Trial one” would then be going on 17 years. He does say it’s different for everyone; but if this is first line treatment to stay sane I just focus on the “10-year plan”; & hopefully I’ll make it as long as his patient from trial one; which will require re-look as when I approach “ten-year” mark his first patient will be approaching 16-year mark. I also pray there’ll be other meds by then and he has mentioned that he’s had my biopsy samples tested and “PicRay” is my next go to Med or 2nd-line of treatment.

    I’m hoping and praying for all those who had to go to 2nd line already and sorry Ibrance stopped working or complications arose for you. I do hope there are a bunch of other treatments to try which is what my Onc says (I do not know if that is “blanket statement” to keep our hopes up; but, I guess holding onto hope is all we can do.

    How often are everyone’s CT scans done-my Onc wants to push them to every 4 then every six months due to my severe “scan-xiety”; but I keep reminding him I want to keep to the recommended protocol for I/L combination therapy which is between 2-4 cycles or 8-16 weeks. Just this month I did allow to go 4 months between scans vs my past 4- years routine has been every 3 mos. he says it’ll be 3xs/annually vs. 4xs/annually.

    I’m very tentative about this as my last scan showed pneumonitis which can be fatal-he did repeat CTScan & bloodwork 1 month after it showed while I remained asymptomatic and all is normal now. But that is scary—shows as glass-like opacity in lungs. Anyone else go through that? I’m also on CPAP for sleep apnea & my mets are to lymph & lungs/pleura. I thought maybe my machine was dirty and could have caused the pneumonitis; but Onc discounted tgat without really answering the question directly.

    I’m continuing since my 6-9th cycle showed NEAD; and I do feel (even though I try to stay positive as mentioned sbove) like I’m hanging on by a thread & the unknowns are the scariest part. I feel that once that thread breaks it’ll be a quick demise. I’ve asked my Onc to plan end-of-life right to die protocol and have that all in place when the time comes as I do know it requires waiting periods and multiple doctors to sign. He said not to worry UCLA has protocol in place to “protect me”; but I’m afraid of being deemed incompetent and a long-drawn out demise is not what I want my family to remember me by. I’ve been on that end forever family members 3xs inn25 years and want more for my husband and 2 children.

    Pandemic replaced funeral/wakes with “celebration of life” which is much more suiting in my eyes. I am catholic so I’d still love a funeral mass; but the 4-6 hours laid out with people standing nearby or kneeling is more than I can bear. I know that part is for family to get support and to say their last goodbyes and to rff we member the peace once I’ve passed; so a private showing before funeral mass would be ok.

    I would like to be creamated snd don’t know if catholic church allows that?

    Thanks gor your input & if I should be directed some other thread in the death and dying issues; please advise!

    Thank you & have a beautiful day-take time to smell the roses. Luv and prayers to all. “CARPE Diem” (Seize the Day)!! 🐶😁💤❤️💕🎈

  • sunnidays
    sunnidays Member Posts: 153
    edited October 2021
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    As people can get long control on endocrine therapy alone how do they know it's the addition of the CDK46 inhibitors and not just the endocrine therapy that is working? it's different if a CDK46 inhibitor is give after endocrine therapy has become less effective. I was wondering this.

  • BevJen
    BevJen Member Posts: 2,341
    edited October 2021
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    Bailey5,

    It sounds like you are doing well. I understand your concerns though about the future.

    I am a Catholic as well. The Catholic Church did not use to allow cremation. That has all changed. To my understanding, so long as the cremains are buried in a dignified way and not scattered, cremation is perfectly allowable.

    But for now, focus on how well you've been doing. Congrats!

  • Greatly blessed
    Greatly blessed Member Posts: 5
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    I just started my 39th cycle of Ibrance.