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  • intolight
    intolight Member Posts: 2,140
    edited March 2019
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    Sandibeach, I start month 34 this week Ibrance 125/Letrozole. I had liver & bone mets. So far I am doing well with a slight uptake in 2 spots on my bones (<3ml) and possibly one lymph node from my last scan last month. My liver is still clear. We are watching things more closely and monitoring how I feel, but no real increase in pain or fatigue so we are not changing meds, yet. My liver mets appear to be doing better than bone.

  • sandibeach57
    sandibeach57 Member Posts: 1,387
    edited March 2019
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    Thank you IntoLight for sharing your information. I find it fascinating that you and your MO are both in the watch/wait phase while monitoring this new update on scans. The two of you seem to have a nice partnership with regards to your treatments.

  • laine615
    laine615 Member Posts: 102
    edited March 2019
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    Hi, I will be starting I/L in 2 weeks. Your stories are so encouraging. Just dx De novo on the 26th. Can any of you tell me if you are also on Lupron and Xgeva? If so, what are those side effects like for you?

  • sandibeach57
    sandibeach57 Member Posts: 1,387
    edited March 2019
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    Hi Hope2018.

    Don't be afraid of Ibrance. Side effects are mainly the low neutrophils and your MO can adjust the dosage if too low. Most of us have fatigue..assuming from lower hemoglobin. Rest when you can. You will find your routine and adjust your lifestyle as needed.

    Follow the link below to get the best thread to help you get started with your questions. Very warm and welcoming folks.

    Also find a thread (topic) that specifically addresses where your mets are, for example, liver, bone, brain, skin..

    It will also be helpful to others if you complete your dx and meds in your profile.

    I will see you on the Ibrance thread!

    https://community.breastcancer.org/forum/8/topics/...

  • sandibeach57
    sandibeach57 Member Posts: 1,387
    edited March 2019
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    Hope1018, not Hope2018. Sorry..my brain..Ugh.

  • laine615
    laine615 Member Posts: 102
    edited March 2019
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    Thank you for the information, Sandibeach. I really appreciate it! I know I have 3 bone mets and the bone mets are Er+, Pr+,Her2-. (Found on accident while having mri due to leg injury)The bone biopsy they did came back breastcancer. I have a mammogram, breast ultrasound, and breast mri tomorrow to try to find the bc. Then on Tuesday I have a biopsy of whatever they find. Then next Tuesday I have a chest and abdominal CT to check for other mets. I thought I'd wait to fill in my bio until I know a little more info. Thanks again for your kind words.

  • laine615
    laine615 Member Posts: 102
    edited March 2019
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    Thank you for the information, Sandibeach. I really appreciate it! I know I have 3 bone mets and the bone mets are Er+, Pr+,Her2-. (Found on accident while having mri due to leg injury)The bone biopsy they did came back breastcancer. I have a mammogram, breast ultrasound, and breast mri tomorrow to try to find the bc. Then on Tuesday I have a biopsy of whatever they find. Then next Tuesday I have a chest and abdominal CT to check for other mets. I thought I'd wait to fill in my bio until I know a little more info. Thanks again for your kind words.

  • sandibeach57
    sandibeach57 Member Posts: 1,387
    edited March 2019
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    Hope1018, you must be in shock. That is a lot of information to digest..mets found by accident..oh my. When all the tests are done and all the results are presented, give yourself time to breathe. It is a terrible disease, but there are many, many of us who are living good lives while tolerating the treatments.

    Keep on BCO. There are many topics under Stage IV that will give you the encouragement you need.

  • sandibeach57
    sandibeach57 Member Posts: 1,387
    edited March 2019
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    The thread below is an excellent start for understanding your diagnosis and treatments.

    Find the instructions in the thread that will tell you how to obtain the free download. The author just recently made this info available in paperback and ebook form on Amazon and it is under $15.

    https://community.breastcancer.org/forum/8/topics/...

  • laine615
    laine615 Member Posts: 102
    edited March 2019
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    Thank you for the encouragement. I honestly appreciate it.

  • sandibeach57
    sandibeach57 Member Posts: 1,387
    edited March 2019
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    Hello Ibrance users. In two days, I am starting month 28, cycle 30 on Ibrance 100/Letrozole.

    My ANC (absolute neutrophil count) was 1.5 on Day 25, so can start the next cycle. My platelets always run low (72k), but that is my normal.

    Just wanted to give encouragement to others.

    I have linked a good resource topic for Ibrance questions.

    https://community.breastcancer.org/forum/8/topics/...

  • divinemrsm
    divinemrsm Member Posts: 6,008
    edited March 2019
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    Thank you all for this hopeful thread. I was dx with bone mets in January 2011, de novo. (Became a member of bco.org at that time). Had chemo, lumpectomy, radiation. Then began Arimidex which kept me stable or nead for about eight years until bone scan this month showed progression in L1 vertebrae and a rib. I'd really been cruising along there, even allowing myself the heady thought that maybe I beat mbc or at least could get 15 years out of the Arimidex. So I'm feeling a big let down, like all the air went out of my balloon, even at the same time grateful that I had years on Arimidex. I feel scared and unsettled like when I was first dx. With news of progression, all those memories of that time have flooded back Into my thoughts.

    This week I began Ibrance/Aromasin. I'd like to know at what point after beginning Ibrance did you first get scanned, and how often after that? I'd gotten Pet scans for several years after dx, then insurance only approved bone and ct scans. I'd like to know the kinds of scans everyone else gets.

    I've also been getting zometa ivs all these years, every month at first then down to four times a year and last year went to every six months. There was some talk about me going on Xgeva and figure the onc will discuss with me at my appt with her in two months. I'd like to know what, if any, biophosphenates those of you with bone mets are on.

    I'm appreciative of this thread.

  • sandibeach57
    sandibeach57 Member Posts: 1,387
    edited March 2019
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    Hello DivineMrsM! I wrote a long response, submitted, then a phone call came in on cell phone, I answered and my reply disappeared..Grrr.

    So will restart. My situation is a little different as I have liver mets. There was some concern that I had healing/sclerotic T12 lesion, but my MO did not agree.

    First off, 8 years on Arimidex for bone mets. That is amazing and give your body a nice big hug.

    Re CT/Bone Scans: I had these two scans prior to starting Ibrance/Letrozole, then every 3 months. It was only just recently, my MO wanted to move these scans to every 6 months and alternate with a liver MRI, also every 6 months. So I get some form of scan every 3 months.

    Re Prolia. I had a history of osteoporosis prior to Stage IV dx and was on oral Fosamax weekly. The antihormonal worsened the condition (vis a DEXA scan) and was switched to Prolia/6 months.

    Re Ibrance Dosage: Initially you will have bloodwork to monitor your neutrophil count. If too low, your MO per protocol will drop dose to 100mg from 125mg. It is fine! I only lasted 2 months on 125..neutrophils and platelets were too low. There are those who are doing well on 75mg.

    When I progress, my MO said she will keep me on Ibrance, but switch to Faslodex as my antihormonal.

    So please keep your questions coming. Also check the main "Ibrance (Palbociclib)" topic/thread. This is a great site and I don't want you to miss any info there, especially since starting new on this targeted Rx!

    Now put your worries aside for just a bit and find something you love to do. Distractions are a must!

    SandiBeaches57

  • sandibeach57
    sandibeach57 Member Posts: 1,387
    edited March 2019
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    Oh! One last thing DivineMrsM. Ibrance takes a while to work..give yourself 6 to 9 months.

  • divinemrsm
    divinemrsm Member Posts: 6,008
    edited March 2019
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    Sandi, thanks so much for all your replies to my questions. Your answers help a lot. And your comment to give my body a big hug for the eight years of Arimidex—it was something I really needed to hear. I thought, “my gosh....yes.......that’s right.” I had gone for a haircut today and when I got home, I decided to thank my body with a long soak in a hot tub, something I rarely do as I’m a shower girl. It felt good.


  • sandibeach57
    sandibeach57 Member Posts: 1,387
    edited April 2019
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    I posted this news on the Ibrance thread. My CT and bone scans from today showed no new metastatic disease.

    So I continue on Ibrance 100mg and Letrozole. I will soon start month 29 (cycle 31). Pretty amazing since I have liver mets diagnosis.. not bone mets.

  • cure-ious
    cure-ious Member Posts: 2,736
    edited April 2019
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    Very wonderful, SandiBeach!!! Now aren't you glad you started this thread?!!

  • sandibeach57
    sandibeach57 Member Posts: 1,387
    edited April 2019
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    Hi Cure-ious. Ha. Yes, I am glad I started this thread...even though I am the only one posting!!

    Maybe others will see that it is possible to stay on Ibrance plus antihormonal for greater than 2 years, especially with organ involvement.

    My Ca 15.3 increased this last time..so will keep monitoring as CT and bone scans look good.



  • Stllivin
    Stllivin Member Posts: 79
    edited April 2019
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    Hi, I’ll chime in. I’m starting my 27 Th month with no reason to think I’ll be having many more months on I/Faslodex. I’m on 100 mg.

    Suz

  • bloomingdalechik
    bloomingdalechik Member Posts: 7
    edited May 2019
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    Hi ladies! I was diagnosed in Feb 2015 at the age of 38 w/mets to my spine (T5 and L2). I've been taking tamoxifen and lupron for over four years. Unfortunately, this week, I progressed in recent scans w/new mets in my spine (S1) and liver. My MD is suggesting CDK 4/6 (Palbo/Ibrance). My question for all of you: Should I complement w/aromatase inhibitor (Letrozole/Femara) or SERD (Fulvestrant/Fasoldex). The standard seems to be the former, but recent PALOMA 3 study indicates better PFS w/the latter. Thoughts?

  • cure-ious
    cure-ious Member Posts: 2,736
    edited May 2019
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    Blooming- Congratulations for a fabulous long run on tamoxifen!! my vote is Ibrance-Femara, and save faslodex/SERDs (and your butt) for future combinations.

  • LoveFromPhilly
    LoveFromPhilly Member Posts: 1,019
    edited May 2019
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    hi blooming - sorry to hear about your progression :( but amazing how good a long run you’ve had, especially while traveling the world at the same time!

    I vote for Ibrance and Femera as well. I was reading a bunch of articles about the two options and from what I read, folks had longer PFS with Femera.

    Also I hear that the falsodex shots hurt like a mofo - so personally I’d want to take the easier teeny pill.

    Monday I start cycle 25!!!

  • sandibeach57
    sandibeach57 Member Posts: 1,387
    edited May 2019
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    Hi Bloomingdalechick,

    My MO put me on Ibrance/Femara immediately after Adriamycin/Cytoxan. She has said that Faslodex will be next and I am glad it was not started first as there are a few clinical trials that require that you have not been on Faslodex (especially after failing CDK 4/6 inhibitors).

    Also in our future, Faslodex might become an oral medication and not a muscular injection. Hold off if you can. Please let us know what your MO recommends.

    Congrats on the long Tamoxifen run.

    I am on month 29 of Ibrance/Letrozole. My SEs are knee joint pain and a few days in bed during last part of the Ibrance off week. Otherwise, I have a great life.

    My scans are good, TMs waffle..but watching trend. But doing great with 2 1/2 years with dx of widespread liver mets.

  • intolight
    intolight Member Posts: 2,140
    edited May 2019
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    Hi Blooming...I have been on Ibrance/Femara for 3 years now with little problem; however, I have been having back/shoulder pain and am having a scan next week to see what is going on. But the treatment so far has not been too bad. We shall see what the onc says...

  • micmel
    micmel Member Posts: 9,869
    edited May 2019
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    Hello ladies.~I am starting my month #31 tomorrow. At 125 mg. Fatigue is my biggest gripe. I pray for 31 more or even triple. I’m thankful for this medicine! And all of my sisters. Here of course !

  • sandibeach57
    sandibeach57 Member Posts: 1,387
    edited May 2019
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    Hi IntoLight. Keep us posted regarding your scan and what is causing your recent pain.

    3 years..wow. Does your MO suspect bone mets?

    Sending positive energy to you and for you to have more Ibrance cycles.

  • sandibeach57
    sandibeach57 Member Posts: 1,387
    edited May 2019
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    Hi Micmel. You are a few months ahead of me. Plus, you are also ER+, PR-, HER-. Our big difference is that you are bone mets and I am liver mets.

    You should get a long run on this drug with bone mets! Keep us updated.

  • sandibeach57
    sandibeach57 Member Posts: 1,387
    edited May 2019
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    I will be starting month #30 on Ibrance and Letrozole. Just wanted to give encouragement to others, especially those with organ mets. I had widespread liver mets at diagnosis.

  • cure-ious
    cure-ious Member Posts: 2,736
    edited June 2019
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    I'm bumping this thread back up to encourage those just starting on I-F treatment- hoping that can we hear an update about how well people are doing, or how long you were on I-F before you moved on, and what else you have found success with after I-F?

  • cure-ious
    cure-ious Member Posts: 2,736
    edited June 2019
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    A recent report in the literature states that Abemaciclib (Verzenio), unlike Palbociclib (Ibrance) or Ribociclib, can also inhibit CDK2, which is a kinase that cancers can use to get around CDK4.6 inhibitors:

    "In cells and mice, abemaciclib inhibits kinases other than CDK4/6 including CDK2/cyclin A/E-implicated in resistance to CDK4/6 inhibition-and CDK1/cyclin B."

    Given that Abemaciclib is also a stronger CDK4 inhibitor than Ibrance, it might make sense to move from Ibrance-Femara to Abemaciclib-Faslodex, has anyone had success doing that?