Ibrance (Palbociclib)
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Just wanted to throw this out there - I've been on Ibrance 100mg and Letrozole since August of 2017, and I have experienced NO nausea. Haven't thrown up once in the almost four years I've been on them!! So, it's not an automatic side effect... hoping you newbies are lucky in that respect, like I am!!
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Following on from PatgMc’s wonderful essay I would also like to welcome all newbies. I have been on ibrance, Letrozole & Xgeva for extensive bone mets since 2016. I started on 125mg but requested a drop to 100mg and my Onc thought it was the best dose. However many people seem to do well on 125mg or 75mg. I have few s/e’s mainly a little less energy on week 3 & recently a peeling thumb 👍. My hair is not as thick as it was but nobody else has seemed to notice or perhaps they have been too nice to comment🤣. My RBC & WBC are much lower than they were but then this seems to be the norm and I have only had 1 cold in 4.5 years. I am very lucky to have a wonderful and supportive husband. There is nothing I can’t do that I did before although of course Covid has put a stop to party’s & travel. I have 4 scans every year 2 x ct & 2 x mri. I continue to eat and drink🥂 whatever I like and consume huge amounts of chocolate & carbs which I very much enjoy.
I would like to remain on these meds for a long time & d hope that they work as well for you.
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Spookiesmom, when you asked your Pfizer rep if you could get capsules and were told you couldn't - does your prescription say "Capsules Only"? That is the only way to get it filled with the capsules instead of tablets.
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Oh, Amanda6, you must post some of your work!
PatGMc
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I really don’t know how the script was written, never saw it. Was faxed I guess. I’ll see MO next month, can ask.
The last month I was on 125, I had nausea, enough so I called in for help. They called in comps one. Took 1 worked great!! Couldn’t poo for 3-4 days, even with MiraLax. I am going to have to feel much worse before I take that again.
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I forgot to tell you my good news! I received the Ibrance capsules (called in by my onc. nurse) yesterday. My side effects were intensified after one cycle of the pills so I'm thrilled. I'm thankful to the Dancer here who paved the way!
Love from PatGMc
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Thanks artists Amanda6 and PatGMc....bottoms up, just took my first dose, decided to go with Zofran w/ now so I can fill in with Compazine later if need be. Thankfully daughter just brought me a bottle of Miralax..... Your experiences have both been very helpful. I am both apprehensive and hopeful as so many seem to have done so well on this drug.
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So nice that this is such an active thread- it's great to hear everyone's experiences. I'm on 125 mg & not sure if they're tabs or capsules - will check on that. So it seems people prefer the capsule - wonder why they even make it in 2 forms? I wasn't able to drink more than 2 qts water today, was told to drink at least 3 - anyone else get those instructions??
Thanks all for sharing your experiences with us newbies, it really helps a lot! Prariesea, hope you have an excellent night...cheers
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Welcome newbies!
Just throwing my hat in to say gingerale or ginger candies can be helpful with the nausea or sour tummy-helped me during regular chemo too- if you get the diet it can serve duel purpose of helping with nausea or constipation. Strong coffee or warm prune juice works well for me too for the constipation side effect. i have heard alot of stage iv's reference Russell Stover's sugar free peanut butter cups as a good laxative before hitting the heavy hitting stuff ie: Miralax or Milk of Magnesia. You may go back and forth between the two extremes sometimes but that's the nature of the Ibrance dance.
Some hair thinning, some minor brittle nails, eyelashes fall out and grow right back occasionally. Other little side effects that are tolerable. Gas can be legendary with this stuff, but its a fun/funny side effect. Biotene is good for dry mouth - get that sometimes. Carry mints to suck on behind your mask as i found masks make the dry mouth worse. Colgate Peroxyl Rinse is good for mouth or canker sores. Overall Ibrance is a much better experience than chemo, I started it thinking "Oh no, it's going to be like AC chemo, oh no!" and its been much much easier. Terrified to first take it and been pleasantly surprised. I've been stable on it for going on 18 cycles with extensive diffuse (innumerable) mets in the bones.
Staying hydrated as much as you can helps, i get those propel packets near the crystal light with electrolytes in it to help get more water in me. They did recommend alot of water to me. Don't worry if you need to drop down to a lower dose after a bit. Many got alot of cycles even at 100mg and 75mg and i'm still stable at 100mg after dropping down from 125mg after a year due to fatigue/mouth sores.
Active thread and friendly thread. Welcome aboard dancers
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Hello Everyone, I’m new to Ibrance too. Starting my third week of my first cycle. So far I have experienced a little nausea and worsening diarrhea. I’m on Otezla for psoriasis which causes diarrhea and the Ibrance has kicked it up a notch. I’m on an Ibrance trial for HER2+. I’m also taking Herceptin, Perjeta and Letrozole. I wasn’t told to drink a lot of water. I know I don’t drink enough water though. Thank you for sharing your experiences with Ibrance.
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amanda6, Ibrance was originally only available in capsules. It had to be taken with food, containing a certain amount of fat, for best absorption. It also contained lactose and gelatin in the shell. Pfizer decided to switch over to the tablet formulation because it had less restrictions (can be taken with or without food), and no dietary issues (tabs contain no lactose or gelatin).
There was also talk that the upcoming expiration of the patent (2023) influenced the introduction of the tablets; the new form allowed Pfizer to apply for an extension to the patent term, which they received in February. Patent exclusivity now expires in 2027, so no other company can produce a generic before then.
Once the tablets hit the market, Pfizer started receiving complaints from consumers about more intense side effects than they experienced with the capsules. Some patients also experienced lower WBC counts, possibly due to differing absorption rates. These patients' complaints (you should always report unusual adverse reactions to the manufacturer - they DO listen!) caused Pfizer to reconsider discontinuing the capsules. So right now, both forms are available, but your physician needs to write "Capsules only" on the script itself, or pharmacies are required to dispense tablets, which is the current preferred form.
Thanks to my hubby, the pharmacist (retired), for explaining all this to me!
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D37, Ibrance can increase the effects of other medications. It might help to experiment with the time of day you take each of your meds and the time between
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Hi, D37! You are definitely the Million Dollar Baby here. That's a lot of expensive medicine you're taking and we know you're worth it!
Love from PatGMc
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thanks Ciaci, & thanks to your hubby too...nice to know the backstory on the drugs we take.
D37, welcome to another newbie. I'm from nh too!
Another question...does anyone take pot with their ibrance? I kind of need it for pain. Also, do you take it at night or during day? I've only been on for 2 nights, but have had insomnia both nights...
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D37, welcome!
Amanda, I was briefly on medical marijuana for pain while taking Ibrance, I did the tinctures. Didn't help me much with pain but did help with relaxation until had upped the thc to highest dose as lower wasn't touching pain and became paranoid, that was fun, kinda "Am I falling out of this chair???" kinda thing. Ultimately cost prohibited me from experimenting different strains, but palliative doctor who set me up said medical marijuana does not interfere with Ibrance as far as interaction or effectiveness so if its helping you pain wise, go for it!
Play around with time of day you take it, I take mine midday with lunch others take it at bedtime, some with breakfast, try taking it in the morning and see how you do
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Welcome newbies, sorry you have joined us. I used Cbd oil but stopped after finding some articles that were concerning. I still use cbd oil on my off week. I've attached a link to one you may be interested in reading.
https://cbdoilreview.org/cbd-cannabidiol/cbd-p-450...
Edited to add: ibrance uses the same liver enzyme.
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Jensgotthis and Rabbit - I’m going to change the time of my meds to see if the diarrhea improves and if I sleep better. I’ve been taking Ibrance after dinner and I’ve been waking up around 2am and not being able to get back to sleep. I didn’t connect that with the Ibrance. Great suggestions!
Patgmc - 😆 I do take a lot of meds and I’m sure they aren’t cheap! A year ago I was only taking a Tylenol now and then. My insurance company must love me now!
Amanda - I hope we don’t get too much snow tonight and tomorrow! I live in central NH and they predicted 5 to 8 inches. Let us know if changing the time that you take Ibrance helps with sleeping.
Denise
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I just saw that one of my FB friends with MBC in the spine had this done today and thought some of you with pain might want to look into it. Her doctor told her it leaves her wide open to have radiation should she need it. My only real discomfort right now is in my sacrum but I'll sure consider this when (and if) the time comes for these spinal mets to speak! Looks like it's covered by Medicare Part B.
https://www.capecodhealth.org/medical-services/bra...
Love from PatGMc
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I take my pill about 9 am every day. About 8-10 days into that cycle, I have a few nights of waking up around 3 am. Don’t have to p, no dog kicking me, just wake up. So I stay there, eyes closed, a few minutes and back to sleep. It’s weird, every cycle it happens.
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Thanks for that,Pat, I bookmarked your article about the new technique, for future needs...
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So far so good, for me for first day. Took first Ibrance last night with some anti-nausea meds and have not had a problem.....really want to avoid throwing up because of how much it aggravates my rib met pain. So far so good if I can drink enough prune juice.... I am wondering though, whether side effects appear/worsen later as the medicine builds up in your system? I have a dear concerned friend, retired colleague who was my mentor when I was hired (eons ago), has had cx himself and nursed his wife through it too, up to her recent passing, bless both their souls. He's worried as heck I'll get more and more fatigued and will not be able to keep up with the workload, clearly wants me to cut back now. I'm wondering how soon I will be able to tell......
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Candy, *doh* sorry meant to respond to your post about your concern about bone mets being ignored in favor of focusing on the liver. Why can't they focus on both? I think with recent imaging you had done showing something in the shoulder I'd push for a PET or a bone scan and see what's going on. Wish doctors coordinated stuff better sometimes instead of having to go here and there to get answers, why can't they streamline, be alot less headache. In your pocket for monday the 19th, keep us posted
prairiesea, congrats on first dose
After first cycle you'll have a pretty good idea how you'll do generally tho each cycle can be slightly different from another. Hoping Ibrance treats you well for many many cycles Cakes, how's 75mg going so far?
Spookiesmom, that's an interesting observation. When I start cycle 18 I'm going to keep track of what days I wake up.
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PrairieSea, Just chiming in as a somewhat longer term Ibrance gal. I’m about 2 years in but I still remember the first days and wondering how they’d go. My MO called me after a couple days to ask how I was doing and I remember telling her I couldn’t really tell yet. Later at my next appointment with her I reported some lightheadedness and queasiness now and then. Having a snack helped with the queasiness and the lightheadedness faded away. A lot of comments I read called Ibrance a pretty easy drug and it’s been true for me. My neutrophils ran low quite often and I often waited an extra week to restart but my MO wasn’t concerned about it. My new MO said she rarely holds Ibrance and I’ve restarted cycles with below 1 on neutrophils values now and still feel about the same. I’m not sure if you’re on Letrozole too, but some side effects come from that and not the Ibrance. (Hair thinning and joint stiffness for me.)
One thing I’d suggest is that at some point you skip the anti-nausea meds to see if you really need them. Best of luck to you!
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After 18 cycles of Ibrance/letrozole I will be changing treatment. I had a growing ovarian mass the was determined to be breast cancer metastasis. I had a hysterectomy with both ovaries and tubes removed. They found MBC in both ovaries. Once we get results of more testing on the tumors and Guardant 360 results then we'll know what my next treatment will be.
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Just started my second cycle of The Dance, this time at 75mg. Last cycle at 125mg, I took it at night with a cup of yogurt, had very minimal tummy ache in the morning, no nausea, no real other side effects...other than severe neutropenia and fever at the end of the cycle, and having to be in the hospital for two days for IV antibiotics, lol. That reaction is very rare, btw, I doubt it will happen to anyone else (I was told 2% of folks have it), don't want to scare anyone else getting started on this med. Besides, the hospital reminded me of eating in a restaurant, they asked me what I'd like to eat and then brought it to me! But definitely call advice nurse if you develop a fever, seriously.
Doing weekly blood draws for now, so we can keep a close eye on things. Hoping my body will be just fine on the 75mg.
Had a hilariously disastrous haircut yesterday, ah, life does go on...
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dutchiris, I really hope the next treatment for you is effective and has minimal, if any, side effects. Sending you love.
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dutchiris- My thoughts are with you. Keep us informed even though you are moving from Ibrance.
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dutchiris, s sorry to hear that. I hope you r next treatment works well for you.
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Wow! A gazillion years ago when I had mastectomies the surgical drains were the most life-limiting part of the experience (well, after the fear).
Look at this amazing new process for removing that fluid to prevent infection!
Be sure to tell any of your friends having surgery to ask about this:
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Reposting from Bone mets where I posted this thinking I was on this thread.....long day:
Thanks for all the stories about moving forward with Ibrance. I went for a specialist second opinion out of town today, and among other things was impressed with the doctor's optimism about the possible effects of Ibrance/letrozole on my cancer. At the same time he took more seriously than the local onc the lack of attention paid to the primary cancer. The third doc who has felt a small node (1.2cm) in my breast, he said he would look at my previous images and see if there is anything to use as a baseline to see how it reacts to the drugs, since it is not so easy, apparently, to identify success of treatment or, alternatively, progression in bones. Meanwhile, dutchins, sorry to hear you are having to move on from Ibrance and hope another treatment works!!
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