Ibrance (Palbociclib)
Comments
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Connis, I am similar to Jobur on the SE's, minor rash for about a week, sore mouth in the first cycle, dry throat wit a small cough, mildly sore joints, fatigue. But all of these were not bad at all. I also avoid dairy anytime around when I take my pill as it caused some gastro reaction...All in all pretty easy. I just don't know if it is working yet.
Deanna, I hope those Neutrophils are cooperating. Hope you are back up and running soon!
So glad to hear some good news Chatty, hope we hear that over and over from you for some time to come. I too am new at this and keeping up with all the meds combos and possibilities is mind boggling.
Monika, sorry about your break too and the fatigue. Working in a school especially as the Vice is exhausting enough...My Onc says YES get a flu shot and I plan to do so. You just never know what weirdo flu will come around and better to get a milder case or none!
Hummingbird! Jeez a piece of great news followed by that??? I'm so glad to hear you are holding stable and may it work for WAY longer than a little while! I'm so sorry about your Mom. Will say a prayer that you girls get a break!
Moissy, thanks for reposting that link! Steph, that stinks...I do hope you will pop in as I too feel like I have a interest in YOUR well being. Let us know what up. It is disheartening to hear of some failures in a row,,,
Hope I can report better news in November.0 -
Hugs to you Stafanie!! My tm's rose last month and I worry about Ibrance not working as well. I am still new to this thread, but I always liked reading yours posts, hugs to you!
Alissa
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Steph, we started at approx the same time. I am so sorry to see you will be leaving. Will you be starting Xeloda before the PET scan or waiting for those results? I wish you the best and please do check in! Myra
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Steph I'm sorry to hear of Ibrance failing you. That is so disappointing. Please keep us posted on how Xeloda treats you. That's the one I am going to do next as well, at least in my mind, after Ibrance. My scans showed no change so not sure what's happening.
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Well, I guess my being dropped to 100 dosage was the correct call for me after all as my ANC only recovered to just above 1 even on the lower dose for cycle 2. They want me to wait for another week and test again before restarting. I'm also being lowered to the lowest dose (75) in an effort to keep me on a more regular cycle with it. I know this isn't exactly the protocol, but I guess it is proving to make sense for me since my counts aren't bouncing back that well. The nurse told me they have a handful of people whose counts just keep getting knocked down too low.
I was disappointed, then decided on some dessert therapy and immersed myself in a Dairy Queen pecan delight sundae. Yeah, that felt good.
THEN, I checked online to see if my CA 27/29 report had come back yet. Got some good news there. Even on the lower dose, my TM's dropped again significantly. So I have gone from almost 1100 at start to under 700 and today's result after cycle #2 is under 400. I know it's still a very high number, but love the direction it's heading. Best wishes to all of you!
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Wow Moisy, those drops are insanely grest!!! Good luck on 75 mg. Myra
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will be starting Ibrance soon. Pls keep me informed of side effects. T
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Way to go Chatty and !!!!!
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Moissey, that's fabulous news on your TMs!!! So happy for you!
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Bimdiddy-
Welcome to BCO! We're glad you've joined us, you've come to the right place for support as you begin treatment.
The Mods
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Great news on TM Moissy!
I've seen references to "magic mouthwash" to help ours gums. Is that baking soda/salt and water? Or is this a mouthwash you buy? I'm flossing gently everyday and brushing twice a day but it seems like my gums are not so great. Any ideas?
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Kaption, for general improvement of gums (as opposed to Ibrance mouth sores), Crest ProHealth gum protection is great. It has stannous flouride which is different than traditional fluoride in toothpaste and creates hostile environment for bacteria/plaque. Listerine also helps. It this is not enough, dentist can prescribe chlorhexidine mouthwash, which is an antibacterial.
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Here is what my oncology nurses said about the various mouth rinses:
To help prevent mouth sores: Use Biotene mouthwash (the Biotene PBF rinse has no parabens), and not a mouthwash that has alcohol.
If you have mouth sores: To aid healing, use the salt and baking soda rinse several times per day (8 oz. water, 1/4 t baking soda, 1/8 t salt). For pain, use Magic Mouthwash. For this you need a prescription, and the pharmacist will mix it up for you. It contains benadryl, maalox, and lidocaine.
I find it helps to rinse or brush after eating. I use a very soft toothbrush, and fruit-flavored children's toothpaste rather than an adult minty one that makes your mouth tingle. Avoid sharp, acidic, or spicy foods. Watch the sugar.
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Thanks Shetland Pony. That's good information.
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Thanks everyone!
Oh, does the Crest have triclosin in it? I use Tom's to avoid triclosin.
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Hi Bimdiddy - Welcome to breastcancer.org. This site has always been a great place to receive and offer support. If you go back through some of the previous pages of this thread when you have time, you'll find lots of individual comments about side effects. Our experiences do vary, but overall Ibrance seems to be a very manageable drug for most. Hope you have a good experience with it.
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Hi Steph
So sorry Ibrance isn't working for you. I know how you feel! I'm going into a clinical study of GDC 0810 at MSKCC but have to wait til 3 weeks after my last Ibrance was taken. Hoping this works better!!!
Does anyone know about GDC0810?
Babs
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Hummingbird, So happy to hear you are getting good results with this drug combo. You are due for some extended success! And so sorry to hear that your mom has been dx'd with bc. I'm sure it will be a great comfort to her to have your help and knowledge as she goes through treatment. My mom was dx'd with bc at age 80, had a lumpectomy and rads and we just celebrated her 94th birthday last month. Wish you both all the best.
Steph, Hope I am not stepping out of bounds here, but I wonder about your onc putting more faith in tumor markers than in scans. Especially when there appears to be quite a few here who have rising TM's prior to having them fall. Might you like to get a 2nd opinion after your scan?
JFL and Shetland, thanks for the tips re mouth sores. And thanks Kaption for asking. Seems like I have a sore mouth rather than mouth sores, but will try using these suggestions.
Dune, Are you going to be joining us in Ibranceland soon? Hey, I just remembered tomorrow is your reunion, hope you have a fun time and meet your $$ goal.
Babs, Sorry, know nothing about GDC0810 but good luck with the trial.
Wishing all in Ibranceland a good night and good weekend.
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You are not out of line at all Jobur. It's been 6 cycles and not only has it not gone down, but it's been steadily rising. Actually it's only the CEA. Everything else looks good. But, it may be my only my readable marker. I am getting a scan next week, but regardless of the outcome of that, (well unless it did an about face, I guess) the trend up is concerning enough to make a move. I might be able to go back to hormonal treatment in the future. He likes the bounce approach. I'm really ok with it.
He encourages second opinions and referred me to Matthew Ellis at Baylor. Not exactly my neighborhood, but I might give a shot anyway. Anyone familiar?
Stefanie
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Once again, my white count rebounded just as my UCLA onc said it would. 900 on Monday; 1400 today. Ibrance cycle #3, let's do it!
Oh, and for what it's worth -- and I'll post this on the Faslodex thread as well -- she (my UCLA onc) also commented that she was pleased my TMs were "stable" (her words, although they were actually down 10 pts) after my 2nd cycle because they often go up for several months when starting Faslodex. It just made me wonder if maybe oncs who haven't had a lot of experience with Ibrance might be abandoning it too soon, as there seem to be quite a few women here moving on from it, cutting doses, etc. I'm not a doc, and I ever don't mean to overstep, as Jobur said, or cast doubt. But I do worry about some possibly not giving the med a chance when it doesn't create an immediate drop in TMs, especially when paired w/Faslodex. Just sharing if anyone wants to bring it up to their onc. UCLA did the trials and my onc has had at least one patient on Ibrance for 6 years, I believe she said, and she clearly knows a lot more about it than my local onc who monitors me, but who has also given me some spurious misinformation about it -- like it was okay to restart it when my white count was 900, when I knew that wasn't a good idea. Deanna
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dlb, I believe that it is common for TMs to go up on Ibrance the first couple of cycles. According to almost everybody on this thread, and my ONC, by the third cycle it should start to drop and usually does. Most of the women I have seen leave this treatment were on it at least three months. If in six months my TMs didn't at least stabilized, I don't see that as jumping ship. I actually stayed on two months longer than my ONC would have preferred because I didn't believe him. But he was right. They did not suddenly drop or even stabilize. So, I would prefer to be proactive and switch it up per his recommendation rather than stay on something that isn't behaving as it should be. i don't want to wait and let the cancer get a stronger hold. And since you are familiar with UCLA, my ONC has had consultstions with Finn regarding his Ibrance patients, so I trust he is getting acurate information from the experts before he makes those decisions.
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Stefanie,could you elaborate on the "bounce approach" you mentioned?
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Sure, Shetland. When the cancer becomes resistant to a particular course of treatment, it doesn't always mean a permanent resistance. So he might do a hormonal combo for a few years, then a chemo drug or whatever the next best line of treatment, and then bounce back to hormonal. He says often (not always and I'm sure it's very individual) the cancer loses its resistance to a drug when it has been absent in your system for a long time. He said the door is not closed for me on Ibrance and we may be able to "bounce" back to it later.
Stefanie
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Stefanie,
Sounds like you have good information and lots of confidence in your mo, that is what we all need when making tx decisions. Sorry your TMs failed to cooperate and you are moving on, but hope Xeloda is kind to you AND very effective. Thanks for explaining the bounce approach, I had not heard of that before. Wishing you all the best.
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Stephanie, I know you are in absolutely top-notch hands @ City of Hope. I hope you know my comment above was meant to be a general one, because it does seem -- at least to me -- that there have been quite a few women on this thread -- and you are the most recent -- for whom Ibrance has disappointed. And I absolutely can relate to what you are going through. I held off several extra months on switching from Anastrazole by delaying onc appts and scans, when it was very clear -- especially in retrospect -- that my TMs had quadrupled (over six months), and I probably should have thrown in the towel at least a couple of months earlier -- before I had that horrible relapse I experienced over the summer. So I totally get the frustration of trying to balance waiting and moving on.
And although my onc didn't use the term "bounce back," I was told the same thing as Stephanie about going back to a hormonal when I was concerned about what I thought sounded like I was "skipping" Femara and Aromasin by going to Faslodex -- that I could always go back to them, but that when a drug (Anastrazole in my case) fails, it's best to go to something that works by an entirely different mechanism. But you can still go back and try the other A/I's in the future.
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Stefanie - Lilly's cousin drug to Ibrance has just been granted breakthrough therapy status by the FDA. My first thought is you and others who have had to stop Ibrance may have success with this new drug when it is available. It's still a CDK 4/6 inhibitor, but may be an option to try in the future after you've tried your next therapy. It has apparently had proven success for women who have already been heavily pre-treated with other therapies. Here's
and some really great info provided by Bestbird on another thread.
Abemaciclib provided breakthrough status
Deanna - That's great news that you have been able to restart cycle three already!!! I wish my own neutrophils weren't so shy about coming back out for more
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Thanks, Stefanie. I thought that must be what bouncing meant. That's the unspoken plan I had come up with in my own mind. If/when my hormonal therapy stops working, I will be interested in doing chemo to beat the cancer back again, then hold the line with hormonal therapy again. It really makes sense to me to address resistance by alternating the type of treatment. Target fast growers and slow growers, different receptors and pathways, etc. because tumors can be heterogenous.
May your next treatment pummel the cancer!
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Kaption, Moissy, dlb, artistatheart, jobur, all you wonderful ladies - thank you for the thoughtful words and good wishes for both me and my Mom. It means so much to me to be able to come here for the tremendous support and caring from all of you. I took my Mom to a breast surgeon and, since her biopsy showed multiple areas of invasive cancer in her breast and a very good possibility that it has progressed to the lymph nodes under her arm which are swollen - she will have a PET/CT Scan next and we are so hoping that it hasn't gone even further. Of course, all of us here understand the anxiety with that!! My Mom lives an hour or so away from me, and my husband and I will be driving her and staying for all her appointments. So - we will do what needs to be done and continue to take it one day at a time.
Jobur - I already told my Mom about the great success your Mom has had and it definitely helps us to know that. Thank you for sharing that.
Stefanie - I'm sorry to hear that you have to move on to another treatment, but I wish you a long, easy time on Xeloda. I have been keeping up with that thread for a couple of months now, because my onc has already told me that that will be my next drug after Ibrance, too.
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Stephanie, This is the first I am hearing about "bouncing" too and find it very hopeful that several Oncs think it is perfectly plausible to go back to a Tx that may have failed or quite being effective before. Thanks for sharing that. Hummingbird, that is some great advice to start perusing a thread that may be my next treatment and get a head start. It sounds like you have a very supportive and wonderful family behind you and you are one strong woman to be supporting your Mom now too. Best of everything to you, your Mom and the DH! Deanna, so glad to hear your next cycle is a GO! It did seem like an alarming string of failures lately........I found it fascinating and inspiring to hear of the 6 year mark for that patient. Hope to hear you are the next Ibrance success story we can all aspire to. Jobur, I too have more of a sore mouth than mouth sores, like a fatigued jaw, although it has gotten way better in cycle 2. Moissy thanks for the link as well as Best Bird's link. It is so helpful. Best Bird too is such a fountain of helpful info! It is always so uplifting to hear of a new therapy coming up. You made my night!
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Ibranceland friends,
As a reminder I just had a great scan after 4 cycles of Ibrance. I just finished my fifth cycle. I have only bone mets at this time. In the past week and a half I have developed a chest cough. I have not cough "up" anything, but there is "stuff" moving (that has a bad taste) and the very middle of my upper back hurts in one specific spot. (No mets in that spot). Should I be concerned? My next appointment is October 22. Should I call before? What does the beginning of lung mets feel like? Maybe it's Fall allergies-but I've never had this before. Just some concern here. No fever, btw.
Thanks for any thoughts, especially from those with lung mets. Thanks
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