Ibrance (Palbociclib)
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Neutrophils only @ 900 today (Day 28). Will have them re-checked later in the week and will see if the leg & foot cramps ease up any in that time.
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Hi I will start this on Thursday of this week Hope to find out side effects from all you here who have been on it
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Gals with leg cramps, are you getting enough potassium? Potatoes and bananas are good sources. I don't get cramps exactly, legs just ache and keep me awake. DH is very susceptible to "Charlie horses" in his legs and we found potassium supplements seemed to help.
Ellen, Hope you are adjusting to the "new normal", I see you were just dx'd this summer and it is so tough at first. Hope you get to see that grandbaby often! They are so fun at that age.
Artist, Thanks for confirming the dry tickle as an se. Seems like it goes away on the week off too.
Deanna, Sorry about the low neuts, hopefully it will just be a short break for you. What does the rest of your blood work look like? Most of my CBC panel seems to have gone farther out from the normal range in this 2nd month, though my WBC and neutrophils are hanging on the low edge of normal.
Hi Connis, I just took my last pill of 2nd cycle. Se's are a little different for everyone, but so far I have had minor rashes, sore mouth, fatigue, runny eyes/nose, leg aches, and dry cough. Don't worry, it's not as bad as that makes it sound! The se's seem to vary for me with where I am in the cycle, so all of this doesn't happen at once, and all have been noticeable, but not horrible. Good luck to you.
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I've been doing okay this cycle. Except for crippling back stiffness in the first 15 minutes of the morning. My mud cycle neutrophils were 1.0. They told me to "jump up and down before the blood draw, it may help boost the counts". Sounds ridiculous to me but I'll try it. Hoping I don't have a dose reduction.
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Well my first three month scan since I was diagnosed this past June showed good results! All areas that were lit up before are now dark... so the Ibrance, Fulvestrant, Goserelin, Zometa combination seems to be the treatment of the hour for me. This is the first time we have had any good news since this all started and I'm very relieved. My tumor markers for the first two months did go up but this month they started going down. So, good news all around.
Jobur... I have the dry tickly throat with a cough... it's not terrible but I also keep a bottle of water with me all of the time. I've also have the restless legs but going out for a walk every day has helped relieve that.
Wishing all of you in Ibranceland good results and for those of you who aren't getting the desired results I hope and pray that your next plan is a winner for you... we all deserve good news and I want that for everyone.
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Chattykat...😸😸😸 Myra
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Wonderful news, chattykat, although I had to look up one of the drugs you're on -- Goserelin. I don't think I've ever seen that one mentioned before. I wonder why your onc decided to add it to your regimen. Do you know? Just curious.
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Congrats Chatty!! My tm's went up this month, so I am very glad to see someone else who had #'s go up, and then down with good results!! Keep up the good results!!
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ysy chattykat! Such good news!
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Very happy for you Chatty! It's nice to hear great news
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Chatty, Terrific!!!! *susan*
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Thanks ladies...
dlb... I have noticed that I haven't seen anyone else on Goserelin... but lots of people on fulvestrant. It's a question I plan to ask at my visit next week because I am curious about why I'm on both. I'm still new at this and trying to sort out all the different meds available. I'll let you know what she says.
Because the Goserelin is a rod they place in the belly... it leaves a big 'ole bruise. So, I leave the clinic with two bruised butt cheeks and a bruised belly... but, if it's working I'm not going to complain too much.
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Chattykat
That's great news! So happy for you!!!!!!!!!!!!!!!!
Babs
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Goserelin is also known by the brand name Zoladex.
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Chatty... Congrats!! I too am on Goselerin, or Zoladex once a month. I was pre-menopausal, so I have to get the injection.
Deanna... My neutrophils are low as well, I have to take a break and have been reduced to 100mg. I was sooo wiped out last week, I knew something was up.
Question to you all... Do you all get flu shots? I always got flu shots and this is my first flu season since diagnosis. I am still working around lots of germy kids and mu anxiety level is through the roof
Monika
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Chatty, So happy for your good results! I think Goserelin is to suppress estrogen/progesterone in premenopausal women as Faslodex is supposed to be for postmenopausal gals. Ouch! Not fair that you young gals have to put up with an extra shot, but good to hear it is all working together so well.
Monika, Sorry you felt so wiped out last week. It must be so hard to keep working through the fatigue. Hope the reduction to 100mg works out better for you. I have never gotten a flu shot before, but think I will get one this year. Sure seems like it would be a good idea for you as you are surrounded by all those little germ carriers, especially if it eases your anxiety!
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Congrats, Chattykat! Wonderful news
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Fantastic, Chatty! Happy to hear your good news.
Monika, yes I did get a flu shot last week and actually, my onc was giving them yesterday at my cancer center to her patients. She advised to get it.
So I also got some good news. I am holding pretty much stable on the Ibrance/Femara combo and I can begin cycle 4 still at the 125mg dose. After a few treatments including 2 clinical trials which did not work for me, and from which I had a lot of progression - I am happy to think that maybe this combo will continue to be the one for me at least for a while longer. Actually, my TM's which doubled and then rose slightly in the first couple of months on Ibrance - have stayed the same now. I'm hoping for a decrease when they get checked again next month. This is especially important for me that I get to stay on Ibrance which I am finding a very easy treatment to be on (except for the low counts) because my Mom has just been diagnosed with Breast Cancer and I want to feel well enough to be there for her and support her. I have to post more about that later. We got the results of her biopsy and I am going with her to see a breast surgeon tomorrow. So good news for me was really needed!
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Oh Hummingbird! My heart goes out to you. Prayers for lots of good news for you and your mom.
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I have a question about Ibrance. How low did your wbc and anc go before your treatment was stopped? My wbc is 1.7 and anc 600. Dr. called and I'm not to finish the last 4 pills and will do a dose reduction of 100mg next cycle. This is kicking my butt but praying it works!
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Hummingbird- I am so sorry to hear about your mom. You'll have so much insight to offer her that I'm sure you will be a huge encouragement to her along the way. I'm sorry she and you are both going through this. I'm so glad though to hear you got some welcome GOOD NEWS on your scans!
Chatty - Congrats on your fantastic news! Wishing you a long period of dark scans
Deanna - Congrats on your tumor marker improvement and sorry to hear you have to sit out a few days. I'll be curious if they keep you at 125. You and I are at about the same place. But my onc lowered me to 100 dose after the first cycle because I had dropped to .5 ANC neutrophils (no fever though). With some extra days off, I eventually recovered to 1.1 ANC. But they wouldn't restart me until tested again a week later. (I had gone up to 1.9 by that time.) I thought they were being somewhat more conservative than the Ibrance protocol indicated. Their rationale was they would rather keep me on the med at lower dose than sitting out days. But I think your docs have followed the protocol exactly. Expecting my bloodwork back today, and if good, I'm going to inquire about trying 125 dose again.
Hi Sally - See my note to Deanna above. I was stopped at .5 until I recovered to well above 1.0. The clinical trial protocol can be found in the Ibrance prescribing info. I'll try to find it and post a link. A few pages back Shetland Pony also linked to a chart that showed definitions for the various grades of neutropenia.
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Dose modification chart - Scroll to Section 2.2
Grades of neutropenia - Scroll to line 7 for ANC/neutrophils
Thanks to Shetland Pony and jjski62 for linking to this info originally. It goes back to page 40 of the Ibrance thread.
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Moissy, thank you!
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Moissy, thank you very much!!
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So very happy to hear that Ibrance+Femara are keeping you stable, Hummingbird, but so very sorry about your Mom's dx. Of all the Mother-Daughter things I can think of doing, bc isn't one of them!
Moissy, yes, UCLA is totally by the book, but in a knowledgeable (they did the trials) vs. simply regimented way. What's interesting is that my local onc (who does my monthly bloodwork and Faslodex shots) told me I could re-start Ibrance even though my neutrophils were only at 900 because they were on the upswing. But my UCLA onc has told me in the past they need to be at 1000, so I refused until they're rechecked either @ UCLA tomorrow (have a follow up there) or locally on Friday. I very much want to stay on the 125 dose and felt like jumping into cycle 3 when my counts were still low was not the right thing to do. I'm only sharing this because it's interesting (at least to me) how a different call (and we all know our oncs don't all think alike) could lead us down a different path. We really need to be well-read and our own advocates, especially when a drug is this new.
Chatty, thanks for explaining about Goserelin.
Monika, I know what you about being wiped out at the end of an Ibrance cycle! It's a tough feeling to explain to my family, but it feels like I'm literally dragging myself around. But I am loving these extra few days off it and feel like a whirlwind in comparison!
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Well, the good news is my blood counts are up and I don't have many side effects.
The bad news... It's not working. 😕
So, starting next week I'm off to Xelodaland.
I'm so happy for those of you doing well on this combo. I wish you all good future results.
I'll probably pop in and follow your thread anyway. I feel I know a lot of you and have an interest in your well being.
Stefanie
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Oh, Stefanie - I'm really sorry to hear that. You have contributed so much to the Ibrance knowledge bank here. I hope Xeloda treats you well and you have a good response!
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Oh, Stephanie, that is so disappointing. Was this decided from scan results or tumor markers or both? Gosh, it just seems like Ibrance has let quite a few here down in recent weeks. But best to find out sooner than later, and glad your onc has a new game plan already in place! Please keep us posted! (((Hugs))) Deanna
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I'm so sorry Stefanie! Success in your new treatment!!
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my last scan didn't show much change, but my tumor markers have been steadily climbing.
I will have a PET next week. My ONC says he doesn't necessarily expect to see a lot of progression, since my last scan was only two months ago, but he still believes the Ibrance is not working.
Thank you for all of your kind words.
Stefanie
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