Ibrance/Palbociclib side effects vs chemo questions
Hi so I will soon be put on Ibrance and I keep reading contradictory information: on one side it says it affects cancer cells but not normal ones which is its advantage, but on the other I see nausea and alopecia listed in the side effects.
So will it be the same as being on chemo? Are the alopecia and nausea comparable? What has been your experience?
Also is ibrance taken for life or how many cycles of it are usually given? Have you had to stop work or other activities because of it? I've heard it can affect the inmune system and I work in the medical field although not related to oncology which is why I have so many questions.
This is so scary. Thank you.
Comments
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Come visit the full Ibrance thread and you'll find a range of SE - some people barely have any while others are finding it to be a tough medication. I can only compare it to Taxotare and Cytoxan chemo and can say Ibrance is about a million times easier. I have a bit of hair thinning but it's only noticeable to me. I haven't had any nausea but know some others have. The primary SE seems to be neutropenia but there's a lot of options that vary from dropping the dosage to changing the dosing schedule. Most people start on 125mg for 21 days, and then have 7 days off. It's a pill form and should be taken with a meal that includes healthy fat. I still work full time and am raising my son. Lots of travel too. The fatigue is real (been on this just about a year now) but I hope to stay on this a long time because it's not been too bad for me. We stay on this until there is progression, and then its on to the next drug. Are you on Letrizole or Faslodex with it
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https://community.breastcancer.org/forum/8/topics/...
This link should take you to the Ibrance thread. A wonderful group of women and men
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hi, I would go check out the ibrance thread you may get a few more answers over there.
You are right it is super scary! but somehow it becomes your new normal. Many women still work and some do not. I have been on ibrance since February 2017 and have found it tolerable...... My biggest complaint is fatigue. About hair, I was bald when starting and now have a full head of hair. Maybe a tad thinner than I am used to but everyone is different. Good luck!
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Hi ceci! The most common side-effects of Ibrance are low neutrophils and hair thinning. Some women have fatigue, some have nausea. I had neither. You take it with food and don't forget to do that.
I worked full-time through my year on Ibrance. The only trouble I had was a caught a cold every 8 weeks without fail. Of course I was on about 40 airplanes last year and I suspect that contributed. Didn't wash my hands enough.
I realize this is all totally scary but you'll discover its not hard. Hang in there.
Hugs. . .
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I have been very lucky. I am still on 125 mg of Ibrance, since the Spring of 2015. There is fatigue, and blood counts do vary and dip, but I still work full-time. My hair did thin, but because I had very thick hair to begin with, it was not that bad in retrospect. The hair thinning was most noticeable to me. I am on Letrozole with the Ibrance. However, one of my co-workers could only stay on Ibrance for one month. I would recommend being careful about being around sick people, but you may not be able to help that situation. Best wishes.
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Thanks a lot for your answers, they give me some relief. I'm taking it along with letrozole actually (femara) for those who asked. I will definitely check that thread/ part of the forum out. I love you for answering. This is being so hard for me emotionally, I come from a tough mental health background and feel like everything is changing too fast and falling apart. This forum is the nicest thing I've found so far.
Have any of you had Ibrance, femara AND Zoledronic acid all at once? That has me shivering. I have bone mets and fractures and it's the first thing they'll start with, it also cause nausea and fatigue, I wonder if everything combines together and changes your life too much.
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I am on Ibrance, faslodex, and Xgeva which is an alternative to zoledronic acid. Xgeva is just a shot rather than an infusion, so if you don't have a port it's easier. I think in my case the Xgeva helps with energy more than it hurts.
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Yes, I had all three plus Faslodex. The first infusion of Zometa (zoledronic acid) can be problematic (causing bone aches), but after the first one you shouldn't notice anything at all.
After two+ years on Zometa I switched to Xgeva because it's a shot. Much less time in the cancer center. They do still have to do blood work though.
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Thank you both for your answers. Pajim, did you only experience bone pain? No nausea/vomiting/dizziness/fever/tiredness, stuff like that. I wonder why Xgeva isn't used as a first line in some cases, is there a reason for that? maybe it doesn't come to my country, I'll ask my onc about it.
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Ceci, when I started on xgeva about 5 years ago, my onc said "good luck getting insurance to pay for it"! So that might be one reason why it's not always given. Don't worry about the ibrance. I found it to be very easy after the first 7-10 days. For some reason I felt very stiff and exhausted but I guess my body must have got used to it because after that I felt really good. I started losing hair after about 7 months but not enough to notice. My blood counts never went down, but I think for most people it does. My onc said even though most people get low counts they never seem to get an infection.
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ceci, It's been so long since the first infusion that I don't really remember. I might have had to take a couple of ibuprofen/paracetamol the second day. But a lot of women do have serious bone aches the first time. If you have a lot of trouble ask the nurses to slow down the infusion. They can give it over 30 minutes rather than 15 minutes.
There are two reasons cancer centers give Zometa rather than Xgeva. The first is that Xgeva is a LOT more expensive. Some insurances may not pay for it. It's possible your National Health won't pay for it.
The second reason, at least in the US, is that cancer centers make more money giving infusions than giving shots. So it's financially better for them to give Zometa.
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Thanks a lot for your answers.
Pajim: did you only get one infusion or do you mean the following ones were easier on you?
HLB any nausea at all? that's the symptom I'm the most worried about. I'm glad you felt well after the first days.
So I'm still not sure, is Ibrance taken for life/until it fails and/or unless it does? Or is it taken for a number of years and then you wait and see if the disease stops being stable or you stop being NED (in case you're lucky enough to be) again?
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HLB, wait, do you mean you've had mets for 5 years and you're still alive and doing good? or were you taking Xgeva for something else? That sounds awesome/incredible.
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Ceci, the relative cost of Xgeva and Zometa differs depending on a number of things but especially if you already have a port. If you don't have a port then you either have to get one or they will be ruining your veins. Also ports need to be flushed at least every few weeks. That means they need an RN to give the Zometa to you but a phlebotomist can give you the Xgeva. My MO was able to provide cost justification for my Xgeva (that I only get every 2 or 3 months) to my insurance company no problem.
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Cive I don't have a port, actually it's the first time I hear of one but I'm assuming it's a portable/permanent access to the vein?
My onc has only told me that I have to go get the infusion every 21 days. I would have preferred Xgeva, I'll see if I can ask my oncologist about it.
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Ceci, I have never had nausea with any of the meds. I have had Mets for 5 years now. I had stage 2 in 2004, the Mets in bones in 2012. Usually you will stay on a treatment for as long as it works. If it stops working, you will go on to something else.
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HLB I'very happy to hear that and that the treatment has worked for you, wonderful. Thanks for all the answers.
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Thank you ceci!
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Ceci, I had Zometa infusions every month for two years, then every three months for one year then switched to Xgeva. Never had any nausea. Only had bone aches the one time. No port. My veins are still OK but when we move to iv chemo, may that be many years away, I'll get a port.
I too have been at this for almost 5 years. You have many good years ahead of you. Once Ibrance and letrozole fail, may that be many years in the future, you'll switch to something else. Probably Faslodex. Then something else. and again. There are dozens of medications. If each works one year you ave dozens of years yet.
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Hi everyone -- I just joined, and have been reading. I was just diagnosed this month with mets in my liver and lung, and am on day 6 of Arimidex and Ibrance. Just wondering for everyone when you started feeling side effects. I was good until last night, and now seem to be quite tired. Not sure if it was the weekend or the Ibrance.
It's nice to see so many people who have been successful at this for a good number of years. I have to admit that hearing my cancer returned after 7 years was not the best day of my life and I just went numb for a bit. Now I need to figure this all out. Any and all advice is welcomed.
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HLB you are welcome, and thank YOU
Pajim, your comment gives me so much hope, maybe there will be better meds by the time all these fail too. I wish us all the best.
Sweetside I'm in a similar situation: diagnosed after 8 years with bone mets out of the blue, it's been like a grief process while also trying to get as much info and be as psychologically prepared as possible. Very rough time. So far, this forum is the most helpful resource I've found, I hope you'll find some comfort as I have.
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I took arimidex alone for 5 years, had the occasional tiredness but nothing crazy. Not sure how it would work with ibrance since I start that in 3 weeks (after radio is done) and my arimidex was changed to femara.
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By the way Pajim (second time I mention you in case you didn't see the other posts) since you've been on zoledronic for a while. I was wondering if there's a specific amount of time I should wait after eating before getting the infusion, and how much later can you eat afterwards. I'm having my first infusion on wednesday, 10:30 am, usually take breakfast at around 8:30 am. Not sure whether I should fast that day or what. My onc didn't mention anything about it and everything's starting already (which has me nervous) I feel like there's still so much I don't know.
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I am so blessed I have been on Ibrance,Femara for 4 rounds and once a month I get Zometa IV's. My blood work is excellent and no major side effects either. On 3-5 I got my first CT scan since I started the treatment. I am so happy to say that the treatment is working! What makes my situation so different,I have not had surgery nor hardcore chemo. In my heart I felt the Chemo my oncologist recommended would have possibly damaged my heart and bone marrow according to the disclosure the oncologist gave me. When I read that,there is no way I was going agree to that treatment. When I was diagnosed in April 2017 my objective was to live quality of life and not allow my organs and immune system to be destroyed by this poisonous chemical. Why do we have to get very sick to get better? It made no sense to me and since I refuse Chemo treatment,the surgery was not preformed. When I got CT and bone scan in Oct.2017 the results showed my tumor remained the same size and a very small cancerous spot on my pelvis. Present time I am feeling great and eating well. I have gained 3 pounds. In my heart and mind I think of myself well. I am very spiritual,that helps me live with this disease. I am so appreciative to God that I am living my life in which I desire with this disease. Stay positive,be brave and don't lose faith. Open your mind to everything that could heal us. Bless you all..
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So glad I found this site. Sometimes it feels like I am alone even though I have a loving a supportive family and friends. You dont share everything so they wont worry.
I didn't have IV chemo but did have a double mastectomy. I have been taking Ibrance and letrezole since October 2016. At my first 3month CT scan nothing was there. 8 months a very small tumor was found on the kidney and was surgically removed. It proved to not be breast cancer but a beginning kidney cancer. At12 and 16 months nothing . My 19th month scan will happen in May.
Some naseau hair thinned a little but most likely would have anyway with age. The only SE I deal with on a daily basis is achy joints. I had to stop the ibrance for 3 months while the kidney was taken care of. The achyness was still there so I feel it is the letrezole doing it.
I was told I will have to take them for the rest of my life. I am OK with it. I went back teaching in Sept. Elementary kids, as my oncologist says, are virtually petri dishes ,and have just this week caught my first cold. I feel very blessed to be living in a time where stage IV doesn't mean there is no hope. I am looking for joint pain release. Might check out the CBD oil that people that have fibromyalgia have found helpful. Blessings to all and stay strong
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Welcome, Wantmore! You're in the right place, this community (and this thread in particular) knows what you're going through. Lots of ups and downs, but we're here for you!
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I was encouraged by your post. As a retired elementary educator, I salute your decision to return to the classroom and the world of awe and wonder where young dreams are molded. I retired fully in 2015 when I was first diagnosed with Stage III breast cancer. When I started my treatments in July of that year, I was told by my oncologist that I had about a 45% chance of an early reoccurrence because the cancer had metastasized to numerous lymph nodes and my chemo treatments were limited due to my heart condition; however, I did receive 30 radiation treatments.
I was allergic to my first two hormonal therapy drugs - tamoxifen and femara. I have been on aromasin since Nov of 2016. Yes, I was somewhat taken back when my PET/CT Scan this past January revealed cancer mets on every visible bone viewed. So I started on Ibrance and Aromasin in February along with monthly Xgeva shots. I had to take a 3 week break from Ibrance 125 mg due to neutropenia and very bloody stools. I just started last week on Ibrance 75mg with the hopes that my WBC will be healthy tomorrow and so far - only one bloody stool.
So now you understand why your post was good news. I am going to stay the course and continue the healing journey. I don't want my cancer fight to be about meds. Like you my energy needs to be focused on embracing a healthy quality of life- exercising, enjoying the grandchildren, traveling, and celebrating my 70th birthday in June.
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maws, just read your post. how are you doing? how is the blood work? are you able to continue Ibrance? Hope 75mg is tolerable for you.
I am on last week of first cycle of Ibrance 75mg and feel extremely tired with achy muscles and joints.
following this post to see if anyone else have achy muscles and extreme fatique.
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