Ibrance (Palbociclib)

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  • PatgMc
    PatgMc Member Posts: 1,312
    edited August 2017

    Maris, welcome to the Ibrance Dance! If you're like most of us, you will have good results on this drug. Yes, we're a little fatigued and some have a few other side effects but many of us have had incredible results. My widespread bone mets showed a remarkable response after 3 cycles and only 2 spots showed uptake on the PET scan after 9 cycles. My oncologist tells of hearing another onc speak of his patient who has completed 40 cycles and continues to do well. You may be one who shows Progression Free Survival or you may have your cancer resolved. It's all possible because God is still in the healing business! You'll find many prayer warriors here and we're happy to know you!

  • teacher911
    teacher911 Member Posts: 152
    edited August 2017

    Dianarose, I am so sorry for all the pain and suffering you have been through recently. Keeping you in my prayers.

    Embarrassing Question: I have been on Ibrance/letrozole for 9 months, 125mg, I should start my 10th cycle next week. Not every cycle but most I have had rectal bleeding on the last week. I am in the process of switching oncologists because my old one didn't seemed too concerned about low blood counts, rising tumor markers, or rectal bleeding. I may have missed this side effect over the course of reading about different side effects, does anyone else have rectal bleeding in their last week? I've had a colonoscopy, everything is fine.

  • 50sgirl
    50sgirl Member Posts: 2,071
    edited August 2017

    Teacher, There is no such thing as an embarrassing question on these boards. We need to be open with our questions and responses, or we risk limiting the knowledge shared here. My onc asks me about bleeding during every office visit. I have never had rectal bleeding, but I did have nosebleeds during my first two cycles and still experience weird little bright red spots and bruises, mostly on my arms, late in each cycle. My doctor told me that it is from low platelet count. My platelets rebound fairly quickly although the colonoscopy that I have scheduled for next week is at risk of being canceled if the counts don't improve from today's blood tests. You can imagine how much I would hate to postpone a colonoscopy! Anyway, do you know if your platelet counts drop at the end of each cycle? Is it a substantial amount of bleeding? You might want to ask your new MO if the bleeding would decrease or disappear if you dropped to 100 mg. I had to switch to 100 mg after my first dose because all my counts tanked to dangerous levels. I have seen significant improvement in bone and liver mets on Ibrance and Faslodex, so I believe that the lower dose of 100 mg is as effective as 125.

    Lynne

  • auroaya
    auroaya Member Posts: 784
    edited August 2017

    Teacher I've had had rectal bleeding prior to being on Ibrance until now I had a colonoscopy and everything is clear. I blame it on the manymedications I'm on including 800 mg of ibuprofen for pain I don't take narcotics since my pain is minimal. Medicines like ibuprofen and Tylenol can damage the liver if taken continuously so that's what I think is causing it but nothing shows on biweekly blood draws. Keep asking your MO for him/her to look into it.

    Aurora


  • LA894
    LA894 Member Posts: 20
    edited August 2017

    Thank you for your advice Lindalou! You were right. I started Faslodex plus Xgeva today and will have 10x rads over the next four weeks before we start Ibrance for the next cycle. I'm really looking forward to no pain in my back. It's quite exhausting. Rad Oncologist says pain my increase at first but will diminish over time. Fingers and toes crossed...

  • JoynerL
    JoynerL Member Posts: 1,392
    edited August 2017

    Pat G, I saw this article, too. Very encouraging! I have noticed that progress in research is coming in from all over the world, including places from which I wouldn't have expected it. There's a huge pot of money out there waiting for the researchers who find the magic solution...thank goodness! Where altruism doesn't prevail, money often does!

  • Dianarose
    Dianarose Member Posts: 1,951
    edited August 2017

    Is it just me or does it seem that most of us who are failing on Ibrance have lobular?

    The other thing was while I was on Ibrance I was so weak . Blaming it all on the combination. Now that they did the echocardiogram we know that there is heart damage most likely from the prior A/C treatment. Before I did A/C I scored a 65 and now a 44. Not good . I am now on heart medication that is helping . My pulse was always too high, 122 and higher. Past two days 96. Feel much better.

    Go to the cancer center tomorrow to check numbers to see if A/C is helping . Scared to death. We don't have a plan B.

  • teacher911
    teacher911 Member Posts: 152
    edited August 2017

    Lynne and Aurora, thank you for responding. I definitely need to get this sorted out. My bloodwork is out of sorts and my platelets are low but not off the chart low. My RBC and WBC are low but my neutrophils are usually at 1 or a little above. Last cycle I was too low so we delayed for a week. I'm hoping my new oncologist can help me figure this out. Maybe lowering it to 100mg would be helpful for me.

    Dianarose, thinking of you.

  • Dianarose
    Dianarose Member Posts: 1,951
    edited August 2017

    Teacher- my MO has me taking folic acid to help with platelets. 1600 twice a day.

  • faith-840
    faith-840 Member Posts: 926
    edited August 2017

    Dianarose, I also have heart damage probably from the Chemo 26 years ago although the cardiologist doesn't readily admit that's what it's from. My heart rate function had been hovering around 35-40 %, now about 42% since he put me on a beta blocker. When I passed out last week my HR was at 40 when the EMT's got here. Don't know why, unfortunately. My BP was also very low. I'm having another echo cardiogram on Monday so we"ll see what that shows. I do know I was extremely fatigued and since my MO said to take a break from the Ibrance, I feel a whole lot more energy. I've been off 12 days now and I can't believe how much better I feel although I do worry now that things will start progressing again.

    I can't answer your question about lobular cancer failing on Ibrance since mine's not and I haven't paid attention to those things. You have been in my prayers and will continue to be. Trust in God that this A/C will knock those ugly cancer cells out for good.

    Hugs and prayers,

    Faith

  • Dianarose
    Dianarose Member Posts: 1,951
    edited August 2017

    Faith- this whole heart thing is scary . The first MO I had said I would most likely die from long term effects from treatment verses the cancer itself. Probably the only truthful thing she said to me.

    You must have been terrified passing out like that. I am really careful about getting up too fast. I move like an old turtle.

    They are going to redo the echocardiogram in two weeks because I am so anemic it could be effecting the numbers . Do you take iron supplements?

    Know that you are always in my prayers .

  • Kimchee
    Kimchee Member Posts: 94
    edited August 2017

    Not to change the  subject but I have a question . Does anyone go out on the weekends with friends and have drinks while on Ibrance?

  • sandibeach57
    sandibeach57 Member Posts: 1,387
    edited August 2017

    That would be a yes. I try to keep to one glass of wine. I am also being treated for liver mets. Don't do hard liquor.

  • Kimchee
    Kimchee Member Posts: 94
    edited August 2017

    Thank you , I don't do hard liquor either I'm more of a beer person . I'm not going to lie I like to have a few ( trying to live a normal life) on the weekends and I don't drink every weekend . Anybody else have input on this?

  • jensgotthis
    jensgotthis Member Posts: 673
    edited August 2017

    Kimchee, yes, I do enjoy a glass or wine or a margarita when out with friends. I don't drink much during my 21 days on - maybe the equivalent to a bottle of wine during that entire stretch, but I feel a little freer to have that second drink on my week of.

  • LA894
    LA894 Member Posts: 20
    edited August 2017

    I'm just starting treatment for my mets. Dianarose I also had lobular and will be on Ibrance, Faslodex and Xgeva after I finish radiation in four weeks. Kimchee I asked my oncologist about wine (my favorite drink!). She said stick to an average per week of one per day (or 7 per week) and it should be fine. So that's what I'm going to try to do. That assumes that it doesn't make me sick. When I was first treated 10 years ago I didn't drink at all - couldn't stand the thought of it.

  • Kimchee
    Kimchee Member Posts: 94
    edited August 2017

    So I'll drink 7 tonight Lol 

  • LA894
    LA894 Member Posts: 20
    edited August 2017

    Ha! Sounds like me. The other 6 days are tough!

  • micmel
    micmel Member Posts: 10,038
    edited August 2017

    Dianarose has been admitted to the hospital. She had super low blood pressure and almost fainted and was immediately admitted for another transfusion. If they can't get a handle on her blood pressure and get her stabilized, she doesn't know what else can be done. I spoke to her about two hours ago and it's all I can think about. She is my special friend who took me under her wing and encouraged me everyday to live my life to its fullest. Now. Many times snapped me back into calm thinking. All while she was going through hell. I have been praying non stop for her. My beautiful friend, I am going to be waiting to hear from her anxiously. I feel helpless. Thank you for the prayers everyone. This is one special lady. I am honored to call my friend. I am praying to god that they can get her stable again! She made it through one time, something similar once before and she made it through. I just have to hope and pray. She will again come through this. She is strong, kind, wonderful, I can't imagine not speaking to her everyday. I feel so sad and so empty. I feel as if I have always known her. It's just devastating to know someone You adore is going through this and you can't do a damn thing to help. I love you my friend.❤️ ~M~

  • auroaya
    auroaya Member Posts: 784
    edited August 2017

    MicMel I'm sorry Dianerose is going through this and that you're feeling sad and frustrated. At times like this the only thing that pulls me through is prayer, sometimes I can't prayer properly so I just repeat the Serenity Prayer

    : Serenity for the things I can't change. Courage to change the things I can and the Wisdom to know the difference. Your will not mine.

    Acceptance or Change. We have no other choice.

    I will be praying for you and Dianerose. Do you know about the thread for Christian Women on BCO? I don't know how to cut and paste the link but if you allow me I'll ask the ladies there to pray for Dianerose.

    Aurora

  • micmel
    micmel Member Posts: 10,038
    edited August 2017

    yes please anything to help her. Thank you. ~M~

  • micmel
    micmel Member Posts: 10,038
    edited August 2017

    yes please anything to help her. Thank you. ~M~

  • PatgMc
    PatgMc Member Posts: 1,312
    edited August 2017

    Micmel, I'm praying for Dianarose and for you. I have walked this walk with many dear friends and it is painful. So many have been in terrible straits and things have turned around. That is what I'm praying for tonight.

  • sandibeach57
    sandibeach57 Member Posts: 1,387
    edited August 2017

    No one deserves to have this disease. Standing with you Dianarose. Fight.

  • Lynnwood1960
    Lynnwood1960 Member Posts: 1,107
    edited August 2017

    Praying for Dianarose. Micmel, prayers for you also as you worry about your special friend. Please keep us posted.

  • LA894
    LA894 Member Posts: 20
    edited August 2017

    I am new to this thread and to this disease. I am so sad to hear about DianaRose and am praying for her recovery. 10 years ago I was also admitted to the hospital and needed blood transfusions. In my case it was due to infections. I am praying that DianaRose gets the medical treatment that's needed to get her successfullly through this downturn. My heart goes out to her, you, and your familieis.

  • faith-840
    faith-840 Member Posts: 926
    edited August 2017

    Micmel, thanks for letting us know about Dianarose. She has been in my prayers daily for awhile now and so are you. I'm sure she's as happy to have you for a friend as you are to have her. Like PatG, I recently walked this road with a very dear friend with a different cancer and it is something no one understands unless you're battling cancer yourself. It's just so hard especially since she's so young.

    Hugs and prayers for all,

    Faith ( in the future

  • AnimalCrackers
    AnimalCrackers Member Posts: 542
    edited August 2017

    Micmel, thanks for the update on Dianarose. I'm so sorry she has to suffer like this. I hope she gets relief soon and they find a way to treat her. You are a loving and compassionate person and a special friend. You are both in my thoughts.

  • Leapfrog
    Leapfrog Member Posts: 406
    edited August 2017

    S3K5 Hi Sandy, Thanks for that information. I'll definitely stay on the trial of Ibrance for as long as it continues and will be guided by my oncologist all the way. I'm on 125mgm. My tumour marker dropped from 700 in January to 390 by April, which was very exciting. Unfortunately, it went up to 520 in May, down to 470 in June and has been static on 480 for the last two tests. I'll have another test this coming week. My oncologist is watching the tumour marker closely, as well as my levels. He's told me that my neutropenia is Grade 3 but on the border of Grade 4. He's told me that there is no difference in efficacy between 125mgm and 100mgm and I guess he'll change my regime if it's necessary.

    I haven't had time to read yours or other posts properly today but will come back to this discussion when I can. I just wanted to say thank you.

  • VonHilda
    VonHilda Member Posts: 3
    edited August 2017

    Ibrance only reached the UK 6 months ago, and our NHS isn't giving it out yet so there is not a lot of info & support networks over here... so I've joined my American compatriots Winking and since I started Ibrance 4 whole days ago (!!), the community information has been incredibly helpful. Thank you so much Women of America who like to talk and share. On the first night I thought my heart was going to pound its way out of my chest but many of you confirmed it was likely to be anxiety - and it was. I was fine the next day. On the second night, I came out in hives, scratching welts done my back, butt and thighs. Coming back on line I saw one comment about 'hydrate, hydrate, hydrate' so I did - and the problem went away. Last night I found a bruise on my right breast but knew I hadn't taken a severe knock to my body at all, so I came back on line again and saw enough comments about bruising that came & went to reassure me. I had a peaceful and very long night's sleep, reassured by you all, the Ibrance community. Thank you!