Ibrance (Palbociclib)
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@candee-678 - I am only just starting my 3rd cycle of Ibrance, and I have noticed this also. A couple of times I have felt the chills, but knew I didn't have a fever. Think I'll start charting which days so I can see if it follows any pattern.
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Candy, I don't get chills but I do get a tingling inside my body in different places (paresthesias). I know there is a medical reason for this and my MO notes this to see if it increases as it could be s symptom of other things. It is important to mention it to your MO. I don't panic as it also can also just be a se for me. I do fine otherwise. Chris
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KelQ- I am premenopausal so we shut down the estrogen from the ovaries with Lupron monthly, chemical menopause. Then we also use Letrozole for the Aromatase Inhibitor.
Thanks to the responses about the chills. Any one else chime in.
I told my sister I am going to talk with my MO at this weeks appt and start a log of the episodes to see if there is a pattern. I wish I would have done that before now as I have had several of these episodes. I will also watch for signs of infection.
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Candy, I've had chills from time to time during my two and a half years (almost) on Ibrance/Arimidex/XGeva. What I see about our Ibrance is that the oncologists are learning as they go on this one just like we are.
I had an itchy rash on my lower legs and feet for about a year. It came and went for a bit and then went altogether except for one itchy spot on top of my left foot - a red bump that can itch like crazy, then stop for a few weeks.
My Ibrance indigestion comes and goes and sometimes burns my gut while making a crazy sensation go through the top of my head. I asked my doctor if he had ever heard this before and he just shook his head while writing it down. Thank goodness he looks at my brain when we scan or I might be worried.
Like a few others here I had some hearing loss in my left ear which was alleviated a bit when I was on 75mg. Returning to 100mg caused it again until last week when something cracked in my ear and the hearing improved. WTMI here - Something hard fell out but I couldn't find it. Gross, huh? Anyway it fell out just in time for my granddaughter's school concert. God is good. (She did a solo of Supertramp's The Logical Song and I'm pretty sure she sounded like an angel. "Grandparent ears"?
I finally decided to just look at the various changing side effects as proof I'm not getting a placebo!
My prayers go up for all of you today and everyday, prayers that you dance and find joy right where you are!
Love from PatGMc
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What are we like? Hot flashes and chills - I call that being ' roastin'/ freezin' and I have spells of obsessive temp taking. Haven't ended up in hospital yet - 7 months in- and my team seem to think Ibrance isn't producing the spike they thought it might in infection admissions.
Nae fingerprints, knackered, itchy lower legs and everything hurts.... can't even open a jar any more without having a lie down afterwards! In many ways it’s good to hear it’s not just me and I seem to have got off lightly in comparison to some of you!
On the other hand... Singing oftener, out for a pub and grub afternoon yesterday with my husband and 19 year old student nephew (who is a star) and away for a couple of days walking in our beautiful Scottish Perthshire countryside tomorrow. Learning slowly to take each day as it comes...
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I’m pretty new to this and just completed my first cycle of Ibrance. My counts were low so this is my second week off. My symptoms were mostly head related with some lightheadedness and congestion type ear pressure and a feeling of having my head wrapped in a roll of cotton. Weird sounding, I know. My onc said I mentioned enough phrases to warrant a brain mri, which of course set me into a panic. I haven’t had any good test results lately. Thankfully this one turned out ok, with a call from the nurse the same afternoon. Never a dull moment.
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candy-678
I definitely have had the chills on Ibrance. It never occurred to me to report this SE to my onc. I notice it at various times. Mostly in bed, I can't get warm, I'll layer on the covers, wear socks, and raise the room temp and then a few hours later I find I'm hot and covered in sweat --- so it comes and goes. It doesn't seem to have any correlation with my body temperature, I haven't had a high temperature. Personally I think the Ibrance may cause problems with heat and cold sensitivity, or maybe the body's ability to deal with ambient temperature--I don't see it as a fever thing. I have also noticed that quite often my feet are icy cold and for some reason my right hand is usually now quite a bit colder than my left hand. My onc ignores all my side effects anyway or tells me to go see my family doctor, as if all these things hadn't started with the Ibrance/Letrozole.
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good evening all, I've had a noticeable list of side effects but all are manageable. My skin became extremely dry right at the get go, using the lotion they recommended during radiation, which is working fine. Dry nostrils (small blood traces when blowing), using a nasal mist and that's working too. Dry eyes and using eye drops and that's working
I've picked up a palm rash (tiny blisters) pcp gave Rx for cortisone cream, seems be working. I drink over 4L of water everyday but still get dry, go figure. I had one upper respiratory infection that put me in the ER; it took three weeks to recover. Oh and yes I suffer from the chills off and on too so glad Ican chalk that up to side effect too, thank you.I'm suffering from sever pain episodes in the upper abs and no one seems to be able to track it down? They seem to happen day 14-16 of cycle, if anyone has any thoughts???? managing it with opioid pain meds.
I started cycle 4 this week and have the whole gambit of scans ordered for my 3 month review. I sure hope this is working.
I read the threads daily and have gained so much knowledge and comfort from all your posts. A big thank you to you all.
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Hi friends, I’m writing from a hospital bed, sigh. I’ve been dealing with declining ability to eat solid foods, went to an all calorie-shake diet, and when I couldn’t even keep that down, presented to ER with severe dehydration. That’s the bad news.
The good news is that it broke the dam in terms of pushing for a cause. The current thinking is either the Ibrance, the Zometa, or the combo has caused nerve damage in my esophagus, causing the upchuck. More testing in store, and I may get a feeding tube. I’m off Ibrance and Zometa for now. Perfect scenario is that nerves heal and I’ll get off tube, and back to enjoying solid food. And find another treatment combo.
Newbies, don’t freak out. While listed in the literature, this is an extremely rare response. But we’re all about information on these boards, both good and bad.
Spring is indeed here. Cactus League is playing in the snow! Hugs to all.
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Jaylea,
So sorry to hear this. Thank you for letting us know.
Sounds like you are in the right place. As always, you are looking at the bright side.
Praying for your best possible outcome,
Gumdoctor
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Oh, Jaylea! What a turn of events. Nerve damage? That seems odd to me. Maybe more testing will reveal something more rational, understandable. What we go through for a diagnosis. I hope you get to rest (unlikely in the hospital) and maybe recuperate. More info is definitely needed. Has a gastro doctor been involved? Some things are not related to cancer or tx at all. They considered that, right? You are in my most hopeful thoughts.
PS Every time I read one of your posts I say, "I wish I could think like that." And, "I wish I could write like that." Your posts always say just the perfect thing in just the perfect way. You need to be here with us, not in the hospital.
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Jaylea- Hello. I’m reallysorry about your troubles landing you in the Er. I’m hoping your docs find a good and not too difficult treatment for you. I’m obviously a newbie and I know none of us knows how this sucky diagnosis will go. I like your bad news/good news way of thinking, reality and optimism. Sending you warm and healing thoughts.0
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Jaylea - wishing you quick, painless healing and on to solid food! Yes, these threads are about sharing and learning, best of all - support! Keep smiling
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Jaylea, I am with the others saying sorry for this set back and hoping that you will find relief and can get back to eating solid food and a better treatment. Thank you for your bravery in posting your troubles. We combine to send prayers and comfort.
Chris
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Jaylea, you'll get on top of what's wrong and be back among the eating. If it makes you feel any better, nothing I'm eating is tasting all that great.
Whatever happens we'll be expecting you here dancing with whatever brings you, friend.
Hit that hospital buzzer a lot 'cause you know those nurses don't have enough to do!
Much love and many, many prayers for you.
PatGMc
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Welcome to all the newbies!
Oh, Jaylea, I’m so so sorry that you’ve ended up in the hospital with a feeding tube! I agree with Janet(?) that maybe this isn’t the Ibrance, but who the heck knows?!? For what it’s worth, after just completing 3 cycles, Xeloda has been very doable for me with few, if any, SE. Let us know what’s going on!!
Girls, we’re starting to think about the boat....ordered gorgeous new sheets and shams, carpet, and pillows...(and what exactly is it with men and pillows???). Hoping to get her back from the Eastern Shore in early April! Salvation! And with luck, no more boxer short crises...
Hugs to all...
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joyner it’s great to think that warmer weather is coming. i know how much you love to sail.
jayllea- you are in my prayers. i hope they find what’s doing it and you are able to eat again.
i see where everyone is talking about cold chills. i haven’t had any issues with cold chills and i’m on my 13 month. i do occasionally feel like my face gets very warm and check to make sure i don’t have a fever; which i never do. my biggest problem with ibrance is constipation
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sorry Jaylea to read about your predicament. I too suffered greatly from digestive issues while on ibrance.I too went to the see the gastroenterologist at MSK to get some help, but got none.
What unfailingly works for me is to ingest digestive enzymes before each and every meal. There's a product by Thorne called Bio- Gest which contains everything the body needs to assimilate the food we eat and that these therapies unfortunately are well known to destroy.
I hope bio-gest works for you as well.
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Miaomix Is it alright to continue taking probotics with the dig.enzyemes? I have been taking the brand that "Z" recommended a few months ago. Thanks for all your advice. HUGHS
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Jaylea....So sorry to hear that you are in the hospital. I am praying the docs get to the bottom of your problem. I hope the feeding tube can be avoided. Sending lots of hugs!!
Hope
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Karen, I adore all the lovely across the pond expressions. Nae fingerprints, knackered, having a lie down, out for a pub and grub. Singing has been proven to help a person's outlook. Have a wonderful time walking in the Scottish Perthshire. Even the name sounds beautiful.
Rosie, welcome. Counts usually settle down after a few cycles. Really glad your brain MRI was good.
Kayla, welcome to you, too. You seem to be dealing with SE's in a reasonable manner. The ab pain could be due to the letrozole as AI's are known for that kind of pain (all over, anywhere on the body). I hope the scans all go well. With all the SE's you are dealing with, it must be working, right? Also, three months is really too soon to see any real results from Ibrance. My MO waited six months to do my first scan. Others here will report similar waits like 4-6 cycles.
Jaylea, the nerve damage theory is still bothering me. From Ibrance and Zometa? It makes sense (I guess) that they took you off both but wouldn't that be a HUGE coincidence for both to be doing such a weird and unexpected thing? I'd hate for you to be taken off, especially Ibrance, for something so un-provable. And if it goes away, and I hope it does, which one caused it? I need data. I need proof. Just the scientist in me coming out but still. I'm pretty convinced that the SE's of any drug are cumulative. Seems Ibrance is in that category, too. Maybe some time off will let you take it again at some point. I take cycles off ALL THE TIME to lessen the SE burden. I am not recommending that to anyone but it is the data I need to make me think my theory is valid.
Thinking of you constantly, my name (almost) twin.
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Jaylea;
I'm so sorry youre in the hospital.....such a horrible place to be in my experience. A while ago (pre even my ovarian cancer) I started to throw up my food. It started with dry things like turkey sandwiches and continued. I went to my doctor who had me scoped (I guess I can assume they've done that with you already so this is not likely the cause of your issue, but just in case) and they discovered that the opening from my esophagus to my stomach was closing. They sliced the thickened skin there and I have been fine ever since. Apparently it can come back but it's not been a problem for me.
All the se's with I/L are confusing. I have very bad pain in my left rib area when I move a certain way....like reaching with my right hand over that direction. I know this is caused by the radiation I received years ago so I do write off certain pains etc. to these causes. I guess what I'm saying is that we've all been through so much it's hard to really know the cause of some of our ills.
All the best to you all,
Cathy
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Jaylea- So sorry for your digestive issues. Nerve damage from the meds??!! As Jaycee said, maybe it is totally unrelated from the cancer. What does the Gastro doc say?? I think when we get the cancer diagnosis, the docs think ALL our issues are cancer related. Why can't we also have other issues as well. Something with the esophagus, stricture lets say. Or inflammation. Hiatal hernia? I hate to see you off your meds if the meds are not the issue. But IF the meds are the issue, WOW I have not heard of THAT side effect. Creepy.
Thanks for the responses about the chills. As I said, I have my MO appt this week ( Thurs ) and plan on telling her about the chills. Sounds like from some postings that your MO's ask about side effects that you are having. My MO does not ask. The nurse asks my pain level as they are doing my vital signs and records that.---I tell them generalized pains from the rheumatoid arthritis, bone mets, or aromatase inhibitors who knows. Then the MO comes into the room and just asks how I am doing--open ended question. This time I plan on telling her about the chill episodes and the fatigue (troublesome for me). My hair and skin are drier (from meds or winter season?), I have heartburn a lot, constipation, hot flashes, the joint and muscle pains, hair thinning A LOT, and who knows what else that I don't think of as med side effects. Got to love it. But we don't discuss all that. Maybe my fault for not bringing it up. Just so much time in the appointment to discuss what I feel is 'important' for that visit. But since I had the chill episode close to my appt time I will bring it up and see what the MO says.
Hugs to all.
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Jaylea, echoing other’s thoughts for you. A team who know their stuff hopefully will get you back to yourself as much as possible. You must feel grotty!
Thanks for your kind words Jaycee49, you must tell me if my colloquialisms make me incomprehensible!
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Karen, all I know is I'm using grotty soon and often.
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Waving at you Jaylea. If you looking for some fun podcasts to listen to and like investigative crime journalism, I can send you a list of terrific ones. I’ve been obsessed lately
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Jaylea...ditto to what everyone has said....hope you are better soon. I have gotten chills on and off also...no fever...just thought my husband was messing with the thermostat lol0
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yes Snooky! Dig enzymes and probiotics work together to provide proper assimilation....XXXOOO back at you...
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Jaylea, the comments from others here made me remember my sister having a surgery to fix where her esophagus meets her stomach. Forgive me for not having medical terms for it. She couldn't keep food down and had to have a feeding tube. She has taken heartburn drugs for years and they often cause this. She is fine now and I hope what you have is easily fixed.
Joyner, I'm so glad Xeloda is agreeing with you. I have friends who have done well on it for years and I expect you will too. Then you can give Ibrance another go. What I'm really happy about is that you'll be back on the boat! Bon Voyage to you and the boxers!
I've had an especially good few days but today not so much. I'm thankful to pop on here and find there's a word for it....Grotty! Grotty 'R' Us.
Love from PatGMc
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I must confess I'm feeling kind of grotty myself tonight....must be the white wine I enjoyed with my three course lunch and the two glasses of Prosecco I had with dinner....my last attempt at a normal life before starting another cycle of Xeloda tomorrow morning...
I love, love, love this new word!
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