Ibrance (Palbociclib)
Comments
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Robin, I hope you have good luck this time around. I lost a lot of hair in the first several rounds, but I started taking 10 mg biotin and I believe it's helping, now just finishing rd.14 tomorrow.
I'm concerned when you say the Ibrance looks different. Last year mine came from a specialty pharmacy and I'm now getting it direct from Pfizer. Both pills look the same! Please check with your MO or pharmacist to be sure it's the right one. I don't want to alarm you but I would be surprised if they looked different but were the same Ibrance. You might even call Pfizer direct. Can't hurt to be careful.
Faith (in the future).
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Faith, Thanks for pointing this out. The one I previously took was a solid color and this one is half & half. I will check to see what it's supposed to look like. You are doing great on this drug and I hope you last a long long time on it.
Robin
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I get my pill directly from Pfizer because I'm doing a trial drug from them so they provide it as part of the trial. It is a solid color. It is orange. I would check on that for sure.
I have my first scans next week. I'm trying to not get too anxious. I have only been on treatment for 8 weeks. Can I see positive results this quickly?
I have booked a flight to Florida to visit a woman I met when I was going through radiation after initial dx before mets dx. She is 70 and I am 37 but we really connected. Shr lives there 1/2 the year. She actually can run circles around me. She is feisty and I enjoyed seeing her everyday during my treatments. I go April 7! This is a something I'm soooo looking forward to. I will skip my tx for trial the week before so I can be 100
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Robin, Are you on a different dose now? 125 mg are tan, 100 mg are half tan and half orange, and 75 mg are orange
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50'sgirl, Yes you just nailed it! I didn't even think of that. I was on 125mg last year and now I am on 100mg. Thanks for clearing that up for me.
Apg, Age is just a number and if you guys clicked then all is good. I am glad you are getting to go on a trip to Florida! I take about 4 trips a year, and that helps me get through this craziness I'm going through. I am actually going to Clearwater Beach on March 2 - 7 and I am so excited. I hope you have an amazing time!!
Robin
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Robin, I am so glad you get to travel so much! I am going to Vero Beach! I am so excited. I have heard Clearwater is beautiful but I've never been to any beach in Florida except Pensacola. We go to the outer banks in NC a lot but it's been a couple years since we have went to the beach! Have a great time! Hope you have gorgeous weather :
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I'm glad to know about the various colors of the different doses. That's good information to have.
I hope you all enjoy your Florida trips, we have visited Destin, both summer and winter. It's a beautiful beach as are lots of others down there but Apt we love the Outer Banks the most. We haven't been in a few years, the trip became a little too hard for us as we got older but we have lots of great memories. When we first started visiting there was hardly any development north of Duck except for a couple of campgrounds. It certainly grew over the years.
Faith (in the future)
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Faith, we Love the Outerbanks, especially Hattaras Island. We have stayed in Buxton a couple times! One of my most favorite places. Hope you get back there in the future!
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I'm starting Ibrance this week, and will take it alongside Arimidex(actually Anastozole). I was dx with liver mets in Nov 2016. I had mixed response from my first followup CT scan following taking this AI, with the large area shrinking from 8 to 6.5cm, and two spots increasing from 1.7 to 2.5cm and 1.2 to 1.5cm, and a new (maybe not previously spotted) small spot of 7mm.
I have been searching of any articles about this Ibrance/AI combination but can see much around.
Is anyone on this combination, how long have you been taking it, have you had success?
Though a little trepidation with the possible side effects, I feel quite positive - just wish I could see some evidence so I can really feel confident.
Thanks
Sarah
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Scwilly - from what I understand, the aromatase inhibitors should be pretty much interchangeable in this treatment. IOW, arimidex should work about as well as letrozol. The cell cycle of ERPR+ cancer uses the CDK4 enzymes, and a bit of CDK6. You are trying to corner the cancer with hormone suppression and stopping the cell cycle. you just want one that is working.
from that scan, I have to say that arimidex is likely working. that wasn't much growth in those tumors and you are right that the 7mm one is very close to the limit of what you can find in a scan. the little one was probably was there before. there is more variability and error in scans than one would like. even the growth is within the known variability of scans. it sounds like you have resourceful onc who doesn't panic ... sticking arimidex and adding ibrance is good plan.
Hope you are with us for a long long time.
>Z<
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Thank you Zarovka, your description and words are a great comfort to me. I think its so hard to be confident, this disease is so complicated. I am usually quite pragmatic, but recently have become a little nervous for my prognosis. I had a really great appointment with my MO last Friday, had a good look around my scans and I have full confidence in her. Great to hear you think these increase sizes should not be too worrying.
Its just that the hoping and not knowing how I will react is hard. Patience is a new virtue I am learning to have.
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The other thing to keep in mind is that hormonal and targeted therapies can take few months to kick in.
>Z<
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Scwilly - I have been on Arimidex + Ibrance + faslodex for 15 rounds and am doing well and still working full time. Agree with Z that the AI's are somewhat interchangable with Ibrance, but it's easier for most oncs to prescribe Femara (letrozole) as that was the pairing in the original Palbo study. However my onc thought Arimidex would be better/easier for me and it is. Ask us anything in a PM too - lots of savvy ladies here. FYI Ibrance is pretty good at knocking out liver mets, and if it doesn't work, there are many meds like Xeloda that can help. Please give Ibrance a few months to start working - it takes about 4-5 rounds to see the effects.
(()) Claire
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Thanks LaLady and Zarovca - for the encouragement. Just waiting for the pharmacy to get the pills in, and I think this is just giving me time to think and wonder. Will probably feel better once ia can get started on my course. I'll let you know how I get on.
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Scwilly, I pray that you will have the remarkable response I have with Ibrance + Arimidex (with XGeva because I have bone mets). I was scanned after 3 cycles and the PET showed a remarkable response with uptake greatly reduced. Today (during Cycle 6) I saw the ortho-onc and he pointed out that my largest femur lesion appears to be dying. I am on the middle 100mg dose of Ibrance and the only side effect I have right now is fatigue. I had that under much better control when I was walking regularly and, weather permitting, I hope to get back to that soon. I look forward to hearing the wonderful stories of how well you and the others here will be doing on this wonderful drug. I remember the days when there was only chemo and, even though it was doable, it was much more difficult than this combo. Here's to beautiful, celebratory Spring days ahead!! God bless you all.
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Hi, Friends. Just popping in to say that I will be off for a few more days. Very busy, most of it good stuff. (Hoping if anyone is wondering where I went they will check here.)
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Shetland- I was thinking about you but not worried... figured you were off having a life. Keep it up.
Z
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My first bottle of Ibrance arrives tomorrow. Very stressed about it yet glad to start it . How soon after taking it would I notice side effects. I did read that one of them is vomiting. I pray I don't get that one or hair loss as my hair is just now starting to come back. Any helpful words of advice will be greatly appreciated
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Dianarose - The response to ibrance are very individual and mostly mild. For me its the hormone suppression that is hardest and ibrance just makes me tired. After 14 cycles of being tired, I am thinking of dropping to 100mg. We have 3 dose levels to choose from so you can adjust things.
Pay attention to your own experience and when something does come up, we will help you through it. It's not a hard med. But exercise helps ALOT with all the side effects.
>Z<
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Dianarose, please don't stress about taking the Ibrance. I have a very sensitive stomach and I did have some nausea but no vomiting at all. I really hate that. My MO's office did say it was ok to take some pepto to settle my stomach. I also had zofran and compaziine on hand but only used them for a few days the first cycle. Your body will adjust to these drugs and some women report no side effects at all. Compared to Chemo this is very doable. The hair thing happens to some of us but not all. After losing all my hair with Chemo, I was also very worried. It thinned a lot after about 4-5 cycles but it is getting better now, cycle 14 just finished. Yeh! I've been taking 10 mg biotin and I really believe that is helping.
One other thing, but sure to take it after a good sized meal and with lots of water to help wash it out of your system. I think the directions said you should drink 3-4 qts. Of water a day, yes quarts. But it's good for us except the always running to the bathroom.
think of it as exercise LOL,!Good luck, let us know what other SE's you're having and someone here will help.
Hugs, Faith (in the future)
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Dianarose ~ I am almost finished my fourth round of ibrance and I think maybe three days I had nausea. Honestly that was not a side effect that I even dealt with , loss of appetite, things don't taste real good for me. I was worried beyond worried about my hair. Today I actually had to brush it for the second day in a row. Soon it will even need shaping. I know right !! Although it did take some time to finally kick in, once it did. It is growing fast , almost over my ears. I will pray your side effects are minimal. One thing I battle and hate!, ok have I said hate ? The evil heat flashes. I mean like what is that? It's an unwanted personal steam bath, that you can't say no to and it's embrassing. In the middle of a conversation with someone and you have to pull the cooling bucket from under your bed and dump over your head! The next second you're in a mad dash to the closet for a wool scarf and wool mittens shivering. Then it's off to the bathroom to mop up the excess moisture that makes it look like you Just came in from a rain storm. Change clothes. Sit down, And buckle in for another ride in about an hour.
I have been thrown into menopause And didn't buy a ticket! Whathappened to wanting my sweatshirts? I have honestly found ibrance to be relatively mild compared to the aggressive chemo. Hang in there.
Prayers your way!
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Dianarose, you got this! Very tolerable. Fatigue will most likely be the hardest thing. Where are you in Maine?
Hugs, MJH
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Also, has anyone seen any posts from LULUBEE? Concerned. MJH
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Lulu bee just posted on stage v fitness of all places! She wanted to report that she made it down the block dragging an oxygen tank. One tough woman. Should be doing very well soon but what a pile of cr43p she has been through.
Z
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Zarovka- it took me months to get used to the hormone blockers. It was a ride for sure.
Faith- I worry about my stomach as I have mets there as well. I am so hoping to have hair when my son graduates in June. I am Not a big drinker but will have to put more effort into it. I have a naphostomy tube on the right side so I can make it through the night without having to get up to pee. I am hoping Ibrance works miracles so I can get rid of this bag attached to my leg.
MJHJan- I live in southern Maine. Small town called Acton. There was a homicide here today which is quite scary. News is not releasing any details yet.
Micmel- I was thrown into menopause four years ago from chemo. It does get better. It took a couple of years but they are not nearly as bad asthey used to be. I did notice that stress will trigger a good hot flash. Surprised I haven't burst into flames 🔥 yet. Lol
Thanks for all the support from everyone. I am sure I will have plenty more questions
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Hi, Dianarose. I only threw up my very first Ibrance pill, and I don't think that would have happened if I had eaten an easy-on-the-stomach dinner. After that, I ate plainer food for a bit, then I went back to my usual good diet and had no more trouble. My recommendation is to eat carefully while your body adjusts to the new med.
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Faith840
I am praying my hair doesn't thin. I lost all my long long nails and had to cut them down to nothing. I can't bare to deal with more hair issues. This ibrance seems very mild to my scalp I used to feel like my head was burned with the heavy chemo. You said right around 4 to 5 cycles which is where I am in my treatment.
Z ~~ what is the hardest part of the hormone suppression for you. I have a hard time separating symptoms, since my medicine shelf looks like a pharmacy. This board helps to narrow down the symptoms!!
Rest well everyone !
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Micmel -
It is hard indeed to distinguish the side effects of the different drugs from each other and also it is hard to distinguish the side effects from a real infection or bug. The later ambiguity is quite dangerous. I check for UTI's every three months by the calendar because there is no way to tell if I have one or not with everything else going on. I probably have some kind of bug right now, but no real way to tell since everything I feel is a possible side effect.
Hot flashes are bad and obviously hormone suppression. I believe that fatigue is primarily from the letrozol because I am constantly fatigued. However, there is a slight uptick of fatigue and general malaise in the 3rd week on ibrance, so that is the ibrance, probably. I have a general cognition issue (inability to focus, remember, keep track of mutliple things) that I think is letrozol because it's also constant and a common side effect of letrozol. And I have severe muscle and joint pain which are constant and a common side effect of letrozol alone, so I think that is letrozol.
I believe the ibrance gives me an additional layer of fatigue and some mild nausea in my third week on it. I also get a burning scalp in the third week. It seems to be associated with a slight shedding of hair which, of course, freaks me out more than anything. I can get rid of it by a good cardio workout. I go for a run, and the pain and the shedding is gone. As you can imagine, I am running like a madwoman every day in the third week on ibrance because I believe it is clearing the stuff from my system and preventing my hair from falling out.
In general, regular exercise reduces symptoms. This is tough because one of the symptoms is fatigue. I push myself through it. Usually the result as far exercise goals is pathetic, but exercise reduces all symptoms. It only needs to be the best i can do at the moment, not a personal best in a half marathon or anything.
>Z<
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Z- thanks for info on LuluBee- she sure IS one tough cookie, and one very funny lady! Glad she is making well deserved good progress.
Dianarose- I live in Topsham, ME . Homicides do get our attention in small Maine towns-lucky to live in a state with a relatively low crime rate.
Best to each, MJH
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Z~ I have all of Those lovely symptoms you mentioned. Yesterday I drug my neuropathy having self outside and walked for a mile, and I intend to do it again today. It felt good. I have to admit. I felt like a little kid who just learned to walk, and this is coming from someone who would run 6 to 8 miles at least 4 times a week followed by strength and weights training. I miss it so much it makes me sad. The day I was diagnosed, I ran over 4.5 miles and didn't even blink an eye. All I had was a lump and I have to admit I was always tired. But nothing else.
You ladies are all warriors. I feel blessed to have this place to come to and know that you all just get it. When not too many other people really do. It's supposed to be 68 today, crazy but I'll take it. Makes for a lovely walk. Funny how the birds sound louder, the sky looks more blue than one remembers when you spend so much time in bed fighting every day. As I'm walking I will be sending my positive thoughts And strength your way. It's a shame there isn't a way for us all to gather. Have a blessed day!
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