Ibrance (Palbociclib)
Comments
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Leslie: like DianaRose, I finished DD AC + DD Taxol, then jumped into Letrozole and Ibrance. Yes, the hair comes back, but more slowly than others are experiencing. Before cancer, I was a "fast grower", but with all of the extra chemicals in my body, growth has slowed. The good news is, I have thorough coverage, just very short. I'm 3 months post-chemo and I only have about 1/4 inch. Your mileage may vary. We are all different. Good luck!
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Pat, that sounds like a very hopeful development. I hope they can get a clinical trial underway soon.
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Leslie I have had a little thinning since starting on Ibrance 7 months ago. But, I was not on chemo just prior to starting Ibrance. I used to be a hairdresser, normal growth is 1/2" per month. From my personal experience the first inch or two that comes in after chemo is not "real" hair. It doesn't feel, look or respond like real hair. It's not as thick, either. It takes at least one month for chemo to get out of your system. After that first inch of hair then the new growth should start to look like real hair.
All that said, if you immediately start Ibrance/femara, that presents a new set of circumstances. I took femara one time years ago and my hair thinned during the time I was on it. This time, starting with a full head of hair, I've only seen thinning (that no one else would notice). I've read that others have had more hair loss with these 2 drugs.
I think it's a wait and see kind of deal. We MBC ers get to do that a lot.
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Leslie~ welcome but sorry that you have to be here. I am starting my 8th round of ibrance this month and my biggest thing is fatigue some days. Other Days nothing! It's much less aggressive than the heavy chemo and I went right from abraxane to taking the ibrance and my hair took about two months or more to start really coming in. Now my hair is covering my ears and is reaching the nape of my neck. It's growing like a weed. I have heard other ladies mention thinning. But so far I haven't yet seen anything like that. I Am even considering my first actual hair cut since this whole thing happened a year and a half ago! I hope this works many many years for you. ~M~
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Faith - thanks for the timely advice. Just realized I did not take my pill yesterday. Getting spacier as I get into the later cycles ... used to occasionally miss one day now I am averaging 2 days. I am glad to hear about the turmeric. I am finding people strongly pro and con even among my complementary practitioners. I went off all complementary meds/supplements for a month, including no curcumin, and my joints and muscles are killing me ....
>Z<
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Leslie,
I finished Taxol at the end of March (wasn't responding) and then started Ibrance late April. The hair is coming in although somewhat slowly. I'm a bit thin on top still but definitely have hair on the sides/back.
Ibrance has been pretty kind to me with the exception of the fatigue but even that is unpredictable. A couple of days ago I was whining about how unrelenting it was, particularly during the "off week". But the last two days have improved considerably. I don't feel like I just want to put my head down for a nap!
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I just want to put my head down for a nap.
Not sure if it is Ibrance or poor sleep or maybe it's all one thing. I know that I never sleep more than 7 hours thanks to the ol' Fitbit.
>Z<
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Z - I don't sleep much either. 7 hours is a good night. According to my Fitbit, I have only achieved my 8.5 hour goal once in the last 2 months - and that was because of a nap during the day. I know that sleep is important to healing. I just wish I knew how to catch that allusive unicorn.
I'm still trying to keep up with full time work, plus the usual household stuff. Thus far, it has been a losing battle. Jeez! I felt great before I knew that I had cancer. I felt great before I infused and ingested all of this crap to my body. It makes me long for the days of delightfully declining middle-aged energy. The days of blissful ignorance.
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Nancy, I am so happy for you. I have been afraid to swim in our condo pool (or any public pool) or get into the hot tub because of low immunity. Unthinking neighbors allow their babies to play in our hot tub so I don't trust it. But I am excited for you as you deserve this great news.
Leslie, I did not have noticeable hair thinning until 7 or 8 months. It is a bit thin now and I tend to wear a scarf, hat, or wig when I go out now at 13 months because I am a little vain also...but I am doing well so it is worth it to me. I had no other treatment prior to my dx and Ibrance.
We were without electricity for 7 hours today for a "pole replacement" so my DD and I went to the mall to buy new dresses for my niece's wedding. I climbed the four flights of stairs to my condo when we returned and had to stop to rest between floors. Now I feel rotten...I hate this!!!
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Midwest, I am amazed you are still working...good job! I had to stop in March...and I am lucky if I sleep 6 hours.
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Leslie, welcome but so sorry you have to be here, however this is great group of smart women who will help answer questions and give you support and a shoulder to cry on when needed.
Pat, thanks for posting that link to the MD. Anderson study. Sure hope they start trials soon enough to help some of us here now.
Z, you mentioned getting spacier as the months go on. My forgetfulness is getting worse everyday, making me really nervous. I think it must be the letrozole but this is awful and I don't know if it will get better or even worse. I'm wondering if another AI would be just as bad. I was off turmeric for just a few days and my feet and lower legs are killing me. Don't know if it's the turmeric or because I'm trying to increase my walking and exercise. My sleep is also not good. I was using melatonin and sleeping great but after awhile, it seems to stop working and I would fall asleep and then wake a few hours later so for now, I'm off that too even though it's supposed to be really good for you if you have cancer. If I have a good nights sleep, I feel pretty good the next day but without it, I feel like s---. No two ways about any of this, we are dammed if we do and dammed if we'd don't. Can I repeat what is said often here. I HATE CANCER,!!
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I am new to this forum, but have been reading for months. I am on 75 mg. Ibrance for 4th cycle, first cycle on 125 mg.I had a severe reaction during first cycle of Ibrance but had radiation to bones in three areas at the same time. Ended up in hospital for one week feeling like I was going to die and internal bleeding.
I am interested in members side effects to Ibrance and what doses they are on.
Thank you.
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Like you Topaz, I am on 75 mg. I'm pretty new here, too, but have been on Ibrance for 15 months. I had a very bad gastrointestinal reaction month two of 125 mg so I asked for 75 mg. I have been fine since. I have mild constipation but that lets up on the week off. Most of my se's are from letrozole. Achy muscles and joints and sleep problems. I'm used to not sleeping more than six hours so that is nothing new. A lot of people here have fatigue issues but I'm retired and don't try to do too much. I also have MS so fatigue is "normal." Ibrance has been an easy drug for me. I hope it turns out to be for you, too.
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Hello All, lots of new voices here. I have been lurking since I am hoping to move back onto Ibrance in the future if able. I moved to the Taxol/Avastin site when the Ibrance stopped working for me. I lasted 5 months as my MD wanted to knock down my cancer. So Z - remember when I started to work out with weights and was on your exercise site? Well, I fractured 4 ribs - my MD said don't you know you are supposed to check with your MD before you exercise? I didn't realize that I was lifting to much weight as I felt really really good exercising and I guess the cancer on my ribs made my core to weak. I am starting slow again with swimming and working with less weights with my legs now and trying to do at least 6,000 steps a day. I had to do 9 rounds of radiation to heal my ribs and destroy the cancer on my sternum and get rid of the pain - add upper respiratory issues to that - couldn't lay flat, on my side, breathe etc. I did the treatments on my lunch hour - luckily the center is next to my work.
I also had double pneumonia, broke a tooth in half (had to wait 2 months for Zometa's last infusion) before extraction. I did 8 rounds of Avastin and 13 rounds of Taxol. Today I had my PET/CT scans and my CA 27/29 went from 230 in January down to 56 today! Almost all of my tumors are now inactive (over 60 in my bones) and my liver, lung tumors have disappeared. The tumor in my neck lymph node is at about 1/4 activity level and has dramatically shrunk. My MD wanted me to go back on Xeloda, but I did the 200 mg dose for 11 months and it was so painful. I also did the total dose of Ibrance (200 mg) and was very interested to see that most of you are on a lower dose without any issues. Any ideas from the researchers here? You are all so smart and savy. I can hardly feel my feet from the Neuropathy so he is looking for another study. When I "blossomed" in November 2016, my PET/CT scan showed that my body was riddled with cancer. Now you can hardly see any cancer tumors!
I admire all the women that are still on Ibrance - if I wouldn't have been so nervous and my MD wanting to knock down the cancer, I would have continued as it seems like it starts to work around 7-8 rounds and it really was manageable with the signs and symptoms. I still work about 50 hours a week. I work casual at the University of Minnesota and met last night a young woman - age 32 with a 2 and 4 year old with MBC and on palliative care. Heartbreaking. Seeing me (without hair) and spending time with her, really gave her and myself calmness, acceptance and possibly hope for her and my future!
In my 11th year of Breast Cancer (2006) with MBC diagnosed in 2014 and plan to stick around for another 11 years+!
You are all Warriors! Lisa
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I am not sure if I should feel optimistic or not. I am on my second cycle of ibrance and made it three weeks this time! The first cycle I only made it two weeks and had to be off two weeks before I could re-start. The third week of the second cycle, I started experiencing worsening pain in my back and occasionally in the ribs (site of bone mets). It feels like small micro-fractures, with random sharp stabbing pains and general weakness. I was sad to report this information to my oncologist, but then he told me that my tumor markers are down quite a bit (blood test taken at the end of the second week -- right before the increase in pain). This was exciting news and now I don't know what to think. I've always been told it's how you feel that's more important than the numbers, but I'm feeling in more pain and more weak. Any chance this pain can be healing pain??!
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medicLisa, You are a SURVIVOR in the truest sense of the word. Stop a minute and listen for the applause from down here in Tennessee! It's a downright Standing Ovation! I hope and pray that you're able to get on 100mg Ibrance and stay on the slow boat to complete healing. I will add you to my prayers along with the young mother you met last night. The fact that you're working 50 hours a week through this just blows my mind and I promise I will overlook my fatigue tomorrow and get busier because of you! I remember those days on Taxol and that neuropathy. I worked but it was a struggle and I took lots of days off. You are quite amazing, my friend!
fight4two, It sounds like you're making progress in tolerating Ibrance and that's good news. We've seen the whole gamut of pain flares in spite of (or because of...who knows?!) tumor marker reduction. Are you taking Zometa or XGeva? One of those is probably going to give you the fastest improvement in the quality of your bones (and more fatigue. Sorry.). Be sure you take lots of Calcium. Unfortunately, feeling more weak comes with Ibrance, especially in the early days. Z always reminds us to try for 20 minutes of some kind of exercise daily. I'm not so good at making myself do it but always feel better when I do. Will you join me in walking 20 minutes tomorrow? I'll see you back here and while I'm walking, I'll be praying for your Ibrance to go to town on your back and those ribs!!
Happy 4th of July and/or Happy Week-end with fireworks to celebrate the fact that we are pioneers in the fight against metastatic breast cancer. Like regular pioneers, we can't always see what's beyond the horizon but we keep moving (slowly), expecting better things.
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Patgmc.....you are the best. Thank you for all your positivity. I really needed it this week.0
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Topaz: I will be starting my fifth round of Ibrance next Wednesday, white count willing. One of my doses I had two weeks off and only 2 weeks on due to low white count, but I'm taking 125mg.
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medickisa: thank you for your post. You show much fortitude with all you have been through. It's you kind of story that keeps me going and from loosing hope.
Fight for two: keep up the good work. I have been on 5 rounds of Ibrance and have had an encouraging scan showing this pesky spots are shrinking. Whilst I only have mets in my liver and so can't comment on bone mets, I'm have had pain/discomfort in my side all year which was a worry but now I envisage it as BC cells having their last Hurrah! I feel this has now decreased this month.
Yesterday I received four letters in the mail from Pfizer. These were checks for $140 for each for my first four rounds of Ibrance. (my copay for speciality drugs is 30% with a max of $150) I wasn't believing The copay refund scheme would work until they came but come they did. Kaiser have their own pharmacy so I can't use a specialist pharmacy that would deal with the Pfizer refund at purchase time. You do need to send the pharmacy receipt and not the checkout receipt. The scheme runs until the end of 2017. See this link: https://www.ibrance.com/financial-assistance Alternatively, you can get this rebate through participating pharmacys henyou pay your copay using the card you download from the website. Go get it!
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Scwilly- not sure I understand your post. I have the copay card but I don't think it was ever used or maybe once . We had met our 10k out of pocket sometimes in March so I think the insurance paid 100%.
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Pfizer will refund any co-pay you have to pay so you only pay $10 per prescription. For me I pay $150 and Pfizer refunded $140. If you have already met your copay then there's nothing to refund. Unless you met it with paying for Ibrance. I claimed my first four months together, and had to go back to Kaiser to print out the old Pharmay receipts (I was so happy they cd do that retrospectively) I think if you have a choice of pharmacy then you can go through a pharmacy that takes the Pfizer rebate into account and you only pay $10. With Kaiser - it's a HMO, managed care company so has its own pharmacy. I wasn't sure it would work until I received the checks in the mail yesterday.
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Glad it worked for you 😎. I got a 300 rebate for the nausea shots I got. The cancer center must have applied for it because I didn't. Was a nice surprise. I have done two research studies. One paid 450 and the last one paid 275. Was nice
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I wish I had known this as I am already 13 months into this paying the full $150 per month. I am almost to my $10,000 max so it may not do me any good anymore. I will check. Thanks!
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Hi ladies, I've been quiet for a while. Managed to make it through my 2nd cycle well. Except for the bit where my handbag was stolen with my ibrance in it...missed day 13 and 14. Started on cycle 3 neutrophils were back up at 2.2 so hoping I can manage this full cycle without incident. I'm considering booking flights to somewhere with sun but just wondering if you have a good cycle and readings are good are you likely to drop dramatically (cycle 2 nuets were 1.8 and only dropped to 1.4. I'm started this cycle at 2.2 so that's higher again. My main concern is I have my scan and results on the 17th. That's after 3 cycles. Onc said if there is any progression I'm back on chemo. I'm worried as I only last 13 days on cycle 1. It doesn't seem any time but he says studies show you can tell it's working or not at that stage. I'm in slight pain.
Has anyone any experience with pleural effusions? Abraxane cleared mine but the started to increase on 3 months of aromasin which failed. I have no issues with them yet but can ibrance work on them?? The lung thing scares the crap out of me. I'm also getting a crunching sensation in my head every now and then. I'm somewhere between head in the sand or talking myself down off the ledge. Set living life though in meantime and grateful for all my blessings...except the big poo that is cancer!
Pat love your positivity too. Wishing everyone healing and pain free days xx
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Lillymillie- Ibrance cleared up my pleural effusions-it took about 5 months for them to completely dry up but there was a reduction in bi-weekly drainage almost immediately. Hope it works on yours too. A sunny vacation sounds great-go book it!
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best of luck IntoLight. You can call Pzizer if you need help - though I think the main thing is getting the pharmacy receipts that show your details etc. see if you can get these reprinted. IMclaimed a few months ate starting,
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Lilliemillie, it seems to me that a lot of people take longer than 3 mo to see actual measurable results on Ibrance. My first scans after 3 months (I'm in the 5th month now) showed a stable situation: neither progression nor apparent regression. Good luck, my friend!
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thanks Chicagoan, I remember know you mentioning about drainage as I have scrolled back. I don't have a drain and think at this point there is not much fluid. Hoping the ibrance will do the trick.
Joyner if I got a stable scan I would do cartwheels across my clinic. Im just afraid he will tale me off to quickly but then again depends on how much progression there would be. I just can't handle another failed treatment and don't fancy chemo for the 3rd time. Fingers crossed. Glad you are stable and hope for same or better results next scan!!
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Lillymillie, There is a woman, screen name lalady, who reduced her pleural effusions with Ibrance. It took about a year and she had monthly thoracentesis during that time. So that could work for you. I had a catheter installed that I drained every other day and after a year, got both sides permanently drained but there was a small pocket left where the drain was. I'm starting my 5th cycle of Ibrance next week and my latest CT scan showed the pocket left was reduced in size after 3 months on Ibrance.
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Thanks cive, I had to Google that procedure...yikes! I'm not really feeling the effects of them but will ask about this. He told me last time there wasn't enough fluid for him to be concerned but what was worrying was a thickening of the wall when i get fluid there. That's good ibrance is working on yours after the drainage which must have been after your 3rd cycle. It must be a relief to have them reduced and know ibrance is working away on them. (I have to say I'm pretty nervous about my next scan). I recognise the name lalady so I'll look up her posts. Thanks
Oh forgot to add any problem with flying and pleural effusion, I know flying puts more pressure on your lungs. I had 2 4hour flights at Easter time with no issue but not sure if it has made anything worse
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