Ibrance/Palbociclib Side Effects Reporting ONLY
This is a thread to report Ibrance/Palbociclib Side effects and what, if anything you were told to do or did to help. Please let us know whether you are also on letrozol or faslodex as these drugs have side effects too. It can be hard to distinguish them. Letrozol/FEMARA has serious side effects that should not be confused with Ibrance. See the FEMARA thread where people who are only on FEMARA discuss their experience.
NO CHATTING OR OTHER DISCUSSION HERE. This is just for reporting Ibrance side effects. The goal is to have a thread that people can scan when they want to understand Ibrance side effects quickly.
Since this thread is not a dialogue, its best that you put all your thoughts in a single post and edit that one post rather than submit multiple posts. Remember that you can edit your post.
We have a vibrant Ibrance thread with lots of discussion about every possible topic and a thread specific to ibrance and faslodex.
I'll start it off with a very thorough list that the AnimalCrackers posted on the Ibrance thread. I will edit this list from time to time to add common side effects that come up in the thread itself so that the main points that people make are summarized in this anchor post.
- Hair thinning - Initially I thought I was not going to be affected by this one. I probably went about 4 or 5 months with no hair thinning and then slowly it started to happen. It was pretty upsetting a around the 7th and 8th month. It continues to thin but seems to have slowed down now. It is just thinning so far. It's not noticeable to others, just to me and my hair stylist.
- watering eyes - I suffered for almost 3 months with watering eyes. Very bad. But that SE was helped by eye drops and did go away. I read from other who have had this se use decongestants to keep it at bay. It may stay it may go away.
- skin rashes - I had mild skin rashes on my arm in the first two months but not again since.
- acidy stomach - Ibrance used to cause me some burning in my stomach. that hasn't gone away completely but has gotten much better.
- sore/tender gums - my gums bleed when I brush my teeth and floss. not horribly, and not all the time. comes and goes.
- sinus congestion - I have mild sinus congestion that comes and goes.
- joint pain - mainly from letrozole. That didn't start to happen until about cycle 4. It is not all the time. It comes and goes. occassionally I'll take advil if it bothers enough.
- fatigue - for me it isn't debilitating but I definitely can't do as much as I used to.
- facial rash - periorificial dermatitis - a two month course of antibiotics resolved this one.
- bruising - I bruise easily and the bruising take a long time to go away. In some cases a faint dark area remains where the bruise was.
- nail growth - I've noticed that my nails (fingers and toes) are growing faster. seems like a counter intuitive effect. But I have never had to cut my toenails so often before. it's really strange for me.
- morning headaches and overall malaise - I felt this way every morning for the first few months but then it subsided and finally went away.
- hot flashes - they come and go and don't last longer than a few minutes. I'm post menopause.
Keep in mind others on this protocol will probably have a very different list of SEs. Everyone responds differently. You may not experience any of the SEs I've listed.
To Animal Crackers list, I will add a few others that I've seen on threads.
1. Tender scalp
2. Low neutrophil count. Many women have a low neutrophil, or white blood cell count on this drug. In general it is asymptomatic. We don't see an increase in infections. I also don't see a correlation with fatigue since I experience fatigue but not a low neutrophil count. However, If your neutrophils get too low, your doctor will lower the dose of Ibrance until you can sustain your neutrophil count.
3. Rashes beyond the face.
In general, the side effects of Ibrance are mild and don't interfere with your life much. Very few women drop Ibrance because of the side effects, except for low neutrophil count. Many women have no side effects at all. In many women the side effects improve with time.
Ibrance is currently the best option for ERPR+ breast cancer both in terms of outcome and QOL and those of us on it are very grateful. The point of this thread is to support women just starting Ibrance with information, not to discourage.
Again, for a wide ranging discussion of life on Ibrance, join us on the Ibrance Thread. You will find friends and support and love in abundance over there.
Just the facts on this thread please.
>Z<
Comments
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I am on Ibrance + letrozole cycle #20. I feel this treatment is doable, and I can enjoy my life. Side effects I attribute to Ibrance, at least partly, are listed below. Currently, I only experience the first three:
Low white blood cell count, low segmented neutrophil absolute. But, no increase in infections.
Fatigue, worse week 3 and beginning of week off. I run at about 65% power. Adaptation: Pace myself, reduce commitments, hire a cleaner, etc. Exercise, sleep, eat good food. Also just try to accept it and be kind to myself. Spend my energy on the most important things.
Tender scalp. Adaptation: Silk pillowcase. A no-brush hairstyle.
Hair thinning: This happened for a while, but stopped before I needed to get hairpieces or scalp makeup.
Mouth sores. Adaptation: To promote healing, rinse several times per day with a mixture of 8 oz. water + 1/4 teaspoon baking soda + 1/8 teaspoon salt, to promote healing. For pain, get a Magic Mouthwash prescription. It contains lidocaine (anesthetic for numbing), benadryl (the antihistamine diphenhydramine), and maalox (an antacid with aluminum hydroxide/magnesium hydroxide/simethicone). Soft tooth brush, mild tooth paste, avoid foods that are sharp, acidic, or spicy. Ultimately, my mouth sores went away with reducing my Ibrance dose.
Bruising easily. This has either eased up, or I am more careful now.
Unhappy tummy when I first started. Adaptation: Eat foods that are easy on the stomach while your body adjusts. This problem went away after a few cycles.
Additional Note: Take Ibrance with a full meal both to ensure proper absorption and to minimize any stomach upset.
Side effects I attribute mostly to letrozole estrogen deprivation:
Watering eyes, caused by dryness. Adaptation: Lubricating eye drops. (Not the kind for redness.)
Dry everything. Adaptation: Moisturize everything.
Joint pain and stiffness if I am still for too long. Adaptation: Move. Moving pretty much fixes it for me.
Hot flashes. Adaptation: Layers, cotton clothes.
Annoying difficulty with word recall, especially names. Adaptation: Take a breath and try not to let frustration take over.
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I'm on cycle #15 of Ibrance with Faslodex and my worst SEs have been malaise (not fatigue where you need to sleep, but more like the inability to get myself in gear), as well as thinning hair. Early in the regimen, I experienced some gastro issues (nausea, reflux, heartburn), but they were all fleeting. More recently, I've had hot flashes, which is a bit odd, since I am well past menopause.
Hair thinning for me has meant shedding -- hair on my clothes and a significant amount in my hair brush vs. anything others would notice. It's slowed down considerably the past few months, perhaps partly the result of cutting back on washing it to 1x/week, which also means less frequent drying/styling. I also now drag out having it colored to every 7 or 8 weeks. And I've also had the very tender scalp at times.
Another bothersome SE I've had is bloating, which is helped some with (1) eating fewer cruciferous veggies; (2) an OTC gas med, when needed (the chewables work fastest for me); and (3) eating natural sauerkraut, a probiotic. Before I did these things, there were some nights (it's worst after dinner) when I looked 5 mos. pregnant -- the bloating was that bad.
Recently I've experienced some weight gain. It's only a few pounds, but it's totally around my midsection -- the "middle age spread" I never had before -- and some of my jeans no longer fit right nor are they comfortable.
My nails are thin and have developed deep ridges (like a vertical washboard) and even some horizontal "dips." I wish I had the fast-growing nails SE! Mine have never looked this bad!
I am still on 125 mg., but I normally have to wait 10 to 14 days for my counts to rebound enough to start my next cycle.
In spite of all this, I love and am very grateful for Ibrance. I think you just learn to roll with the punches... Deanna
PS ~ We're all different, but I would venture a guess that one reason I've avoided mouth sores, UTIs and some other common Ibrance SEs is that I have always been a supplement user, including Vitamin C, which may help to prevent those things. I'm not recommending it for anyone else, but I've used supplements for 35 years and have always believed they've kept me very healthy, except for having mbc.
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I had to change AI when I started Ibrance so some of these SE's maybe the Femera.
hair thinning, really, really thinning & much oily than normal. I have to wash it every 2 days otherwise it's a greasy mess.
nails growing like crazy. Pretty sure I had to trim my toe nails 2x this week.
tip of tongue burning, I use magic mouthwash when this happens.
hot flashes at night waking me up, so then I can't get back to sleep, so add some insomnia to that even though I take a sleeping pill.
More joint pain than normal especially my knees.
I'm now on 100mg 21/28 days because my counts fell to dangerous lows on 125mg. My counts are still low but just high enough to not have to take extra days off (fingers crossed)
But like Deanna I am grateful for the drug & for this study that I'm on, otherwise I could never afford it.
cheers, dee
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I've only just started... am on Day 6 of first cycle. Initially I thought the racing heart was a reaction on the first night but that was just anxiety. The hives on the second night were due to a lack of hydration. Other than tiredness, I have noticed a bruise on my right breast which I will get checked out tomorrow. Anybody had this? Also I feel really quite chilly and was wearing a sweater all day today whilst everyone's else was in shorts and tee shirts as it was a hot day in London today. Anyone had this SE
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Does anyone know why Ibrance causes fatigue? It seems like that is a very common SE and when patients take a break from it they feel so much more energy. I'm in my 8th month on IF and fatigue is consistently my worst SE.
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Grannax, the fatigue is very much related to lowered blood counts. Oncs watch granulocytes or neutrophils or ANC most closely (the part of the white blood cells that fight infection), but Ibrance can also lower red blood counts, for which fatigue (not enough oxygen) is a major symptom, along with shortness of breath, racing heartbeat, dizziness, anemia, and other common Ibrance SEs.
VonHilda, welcome to BCO. Yes, Ibrance and other meds can mess with our internal thermostats, as can a lack of estrogen. I'm no longer on Ibrance, but when I was (for 19 months), I found the SEs got much better over time. Hope the bruise turned out to be nothing serious.
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dlb so even if ANC is not too low to delay Ibrance, it still could cause fatigue? Or does RBC have to be low, too?
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My platelets were consistently very low on the first 3 cycles of Ibrance 125. My MO dose reduced me to 100mg and platelets now measure between 55-75 around day 21. I am also on Letrozole and just started Prolia subq (was Fosamax 70) for worsened osteoporosis..due to Letrozole. My Ca15.3 is now in normal range and liver mets are down to one measureable lesion with scattering mets.
Mouth Hygiene: For irritations, I gargle with Biotene mouthwash. For minor sores, I gargle with baking soda mixed with warm water. If sores continue and become painful, I switch to Magic Mouthwash Rx.
For Fever Blisters I am prescribed Valtrex.
For Shingles, I will be getting Shingles vaccine when my counts are at their highest range.
For Intestinal bloating, I suspect it is Letrozole and take lactaid. I am lactose intolerant and Letro has a very, very small amount of lactose. Helps.
For tears to mucosal tissues in urogenital/rectal area, I use spray bottle with water with baby wipes to gently clean, followed by Boudreaux's Butt Paste and apply thin layer until healed.
For achy joints, I keep moving..walking helps a lot.
For constipation...I drink 1/2 gallon of water/ day.
For fatigue, I rest when possible by taking naps.
I am on 10th cycle and so glad Ibrance/ Letrozole are working. SEs are manageable.
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Since I've only been on Ibrance/letrozole/xgeva shot 2 months, I found the fact that you are doing so well encouraging. Thanks for posting.
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Hello Ladies,
I haven't been up here in so long but now that I have to be I knew just where to go to get some information because I am so nervous. I been doing great for 5 years on tamoxphin now it's nor working and I have small spot on my breast bone. My doctor recommended me starting on ibance, fastlodex, Zoldex and the X-geva shot. I am so nervous because I don't know what to expect. I am fairly healthy not on any other medications. The Ibrance is suppose to come tomorrow morning so I guess I will take a pill with my dinner. I can't seem to sleep at night because all I can think about is this new medicine. I had zero side effects of the tamoxphin or Chemo other than the losing hair. Can someone please help a sister out and ease my mind. what I am grateful for that it's something we can take. I know everyone is different I am just praying that I can just continue to live a normal fun life while I can. I have an 8 years old and we are very active I would hate for that to stop. Thank You and I am praying everyday for us all.
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darnette You might want to go to the Ibrance thread. You will find encouragement there, too. Lots of ladies living well on Ibrance for a long time.
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Darnette, I agree with Granna2x...the Ibrance thread is very supportive. I have been on Ibrance for 15 months and am doing very well. Today I actually feel good. There is a lot of hope for us with new breakthroughs happening everyday.
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Here's the link to the Ibrance thread.
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