Ibrance (Palbociclib)
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Happy Thanksgiving y’all! I received excellent news yesterday. My scans showed that all my lesions had decreased activity! And there are no new lesions and still no activity in my organs. So yay! That is what I am thankful for today. And I am thankful for all you as well!
Some of my family is here visiting and I gotta say, I’m kind of already at my limit. I’m not good with people taking up my space. And my nephew, who is super cute and only 4, can be a terror at times. I’ve never seen such a willful child. It really grates on me. He’s also still mastering potty training and has already peed on my floor (stone). So I’m kind of ready for them to leave. But they’ll be here until next Tuesday. Sigh…. And then, my parents and grandma are coming for a week. That is waaay too many people. I’d like to say we can relax after that but then we’re going to Florida to see my in-laws for New Years. Ugh….
I hope everyone is enjoying their Thanksgivings or their Thursday. Our dinner was delicious. Now I just need a nap and then dessert
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yay Katy !
Happy Thanksgiving to our American Friends!
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Fantastic news, Katyblu!! I sympathize with you on the long visitor stays. It sure sounds tiring. Maybe when your parents come they’ll step into parenting again and give you a bit of a break?
Rabbit, your meal sounds perfect. I hope it was enjoyed!
IWrite, adding my thanks for the info on bone strengtheners and side effects with dental work. Makes me really not want to take any of them.
Hope all are as well as can be today.
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Glad this is helpful information.Root canals and crowns are okay…extractions of any kind are risky.
I can only speak from my own experience…I was off Xgeva for six months and still had a test result of 75. Once the drug coats the bones it sticks around evidently.
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Happy Thanksgiving to all. What I'm thankful for today: 15+ years of NED; my wonderful husband who is trying to learn what he needs to know about MBC (we had not met when I went through the first ILC diagnosis and treatment); my original MO who jumped right back in to reassure me that we will fight this together; and all of you on Breastcancer.org -- I was back on this site within hours of seeing CT results that referred to suspected metastatic lesions. (It took another month to get an official diagnosis, but I was lurking here reading up on possible treatments and success stories, so I was in a better mind-set when the other shoe dropped.)
Starting the dance with Ibrance and letrozole in the next week or two. I have also gone from panic about the Ibrance cost to feeling grateful that I saved enough money in my 401(k) over the years that I can handle the after-insurance costs (even though it means I am *not* eligible for the Pfizer program.)
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Lauri Welcome and happy Thanksgiving to you. There's a wealth of information on this site. Also there's a support group for caregivers on every other Tuesday at 4. You can see the info as soon as you sign on. Some other ladies may chime in about different programs that help pay for Ibrance besides the pfizer.
Waving hello to all. I hope you all had a great holiday for those who celebrate.
Tanya
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quick question. My son brought a cold/cough virus into the house and now my husband has it. I feel being immune compromised that I’m bound to get it. Was anyone advised to stop taking the ibrance while sick or or to keep going ? I have left a message with My MO but I’m not sure she will get back to me today
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BAP, my husband caught a cold, and I started taking Zicam. It may have helped because I didn't get it. I was washing my hands incessantly and spraying Lysol daily. I can't answer whether you should stay on Ibrance.
Lauri, if you have insurance through an employer, Ibrance is free. You can go on the Pfizer website and fill out the paperwork. If it's through Medicare, you can also fill out different paperwork to get help, but you have to be a certain percentage of the poverty line, not including retirement money. I think it's somewhere around $85,000 you can make as a couple. Don't quote me on the amount. I'm not entirely sure. It seems you may already have researched, but I wanted to let you know just in case.
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KBL. I left a message with my MO so hopefully someone can get back to me today. My child coughed in my face last night so I feel like it’s a matter of time. But hopefully not.
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Oh, gosh. I’m sorry. Keep us posted about what your doc says about the Ibrance
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Katy - You got through your first scan and the scanxiety that comes with it. Not only did you do that but the Ibrance dance has you dancing heading toward NED with the decreased activity, woo hoo! I haven't even managed that yet! (Lights up every time just hasn't moved beyond known areas yet, except for that spot in the lower right lung which popped up and has remained stable in subsequent scans-stable mediastinal nodes, stable spleen calcifications, stable haze mesentery (basically abdomen/stomach lining) so considered stable overall as no changes just same). So So happy for you! Woo! I find that I like being around people but with this added baggage I kinda like company in controlled spurts. Alittle bit here, Alittle bit there. Its fun and I enjoy it but I really enjoy my naps too, and if I don't get my nap in - oh boy - a snickers bar couldn't even rectify the situation, I become a certified grinch. However after my nap I'm like Scrat from Ice Age Plie' - ing through giant acorns. Onward!
Candy - celebrating not only the decreased dose that has lessened SE for you in a good way, but also for the fact you had good scan results even with the reduction! So happy for you Candy! You deserve lots of good news to keep piling on after all you've been through, so I pray it keeps on coming!
Lauri- welcome to the thread!! I'm sorry you had to find your way back here after a 15 yr hiatus but we are here to help keep you sane in the midst of this type of DX
All spectrums of the emotional toll it takes is welcome here including a healthy dose of humor - even gallows humor. Or immature humor (raises guilty hand). The rollercoaster imagery can be overused, but in the case its accurate. You'll learn to find ways to let go of the bar and raise your arms realizing you have no control and that there are still opportunities to smile and laugh even in the chaos. Welcome! Welcome! Even if you don't quality for the Pfizer program - your specialty pharmacy may have a program themselves also your oncologists office may have connection to others that may help cover costs - I think someone in this thread mentioned not long ago PAN or income based something or another (help ladies!). I as really nervous taking my first pill - but here I am about to start cycle 26 Don't worry if you need to drop down in dosage due to blood counts or SE (side effects). I was on 125mg for a yr and dropped down to 100mg at my request due to side effects - I've been on 100mg ever since. Its cliche' but take it one day at a time and we're all here to help as you navigate Iwrite - thank you for the info/reminder! What a mess. I was aware of this, i think this is why they say do major work before you start taking this the Zometa/Xgeva type stuff but I only learned that on here - nobody in the medical field said anything. Its supposed to make the environment less friendly for mets in the bone BUT like with everything we take there are downsides. So sorry a simple cost effective extraction is denied because of this
Rosie, I agree, I really don't like the SE possibilities with Zometa and Xgeva. I'm going to every 6 months now instead of ever 6. Trying to spare myself some SE associated with long term use. When I talked to MO about spacing out more MO said studies show maximum benefit is achieved at 2 yrs of use (Once a month for 6 months then every 3 months there out) tho some studies say 3 years. I'm going with the 2 and just going to go with twice a yr infusions. One less thing.
Waving Hi to Tonya! Waving Hi to Jack5ie!
Aprilgirl - Sounds like you packed alot in a short time but it all sounds good. Even if some was bittersweet. Storing up memories for the memory bank and also just letting ourselves enjoy life. Its good to remember to do that even throughout our general worries and concerns with this dx that never go away. Anytime I can smile and laugh even if everything else about the day sucked - its a good day because I smiled and because I laughed, even if just alittle
Hope you and Cakes can meet up next go 'round! Lee - RK is on Verzenio and still sticking around, others have switched treatments Candy etc and stuck around. Make your home in Hotel California, we won't let you leave
Hoping Verzenio treats you well! As we say around here, once a dancer always a dancer KBL- Glad to hear your appetite is better, that's good!
Moco- Sorry for the whiplash your dealing with having a surprise treatment change. I hope the new combo is gentle to you and hard on the cancer. Stop by and let us know how the new combo feels/is working once you get alitle experience with it under your belt. Wishing you success with this combo!
RK - I had a vague memory someone on this thread had the name Regina, but I did not realize it was you! How awesome is that. Ya'll have some pretty 'real life' names out there! I'm tellin' ya everytime I discover a new name, always end up liking it alot! I wish you had a wand and I had a wand. Pain is better today a bit. I'm glad the incremental dosages up are going okay, this is a great approach your MO is taking, I wish more took it. Hey medium dose sounds good, hoping blood cooperates and no infamous stomach issues start knock knock knockin' on your backdoor :P Hope you and your men had a wonderful thanksgiving!
Cakes - I'd be rooting for the toy group - they are just so darn cute! Beloved would be all for the hunting group- particularly the basset hound.
Snowdrop - thank you
Happy thanksgiving! BAP - If I've ever felt a sniffle coming on I take Zicam like KBL and drink OJ to boost immune system and been A-ok very quickly after I do that. However, in your unique situation I'd definitely consult MO. Perhaps she'd agree with Zicam/similar and some vitamin C or Emergen-C. Zicam works really fast, faster than any other cold stuff I've tried over the years - plus its natural and I've taken it as a preventative too especially if I hear beloved sneezing and been fine.
Hope my US friends are recovering from thanksgiving festivities yesterday. I'm going to finish my hard iced tea from yesterday and some thanksgiving leftovers and if that Ibrance side effect decides to make itself known - at least a few legendary muffins can be cut without scaring anyone
Love to you ladies 
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Thanks Rabbit - I’ll have to ask if I can take things like zicam since my poor liver is bent outta shape. The oncology pharmacist called and I forgot to ask her. I’ve been sucking on lemons and eating a lot of vitamin c foods for now.
KBL- as an update the pharmacist said to not stop taking the ibrance just yet and said not to until I talk to my MO . But she said unless I have a fever to which I’d have to go to the ER or infectious symptoms like green sputum , to keep going. So I suppose that’s what I’ll do and hope for the best ! She said it’s quite a common question
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Happy Thanksgiving everyone, and to Lauri in particular. I've spent the last week or so reading through some of the old posts because I'm about to start taking Ibrance in a couple weeks too. It helped a lot to read what it's been like for everyone so far! The first sign of trouble was a pleural effusion on an X-ray, followed by a CT scan that showed a suspicious spot in my lung and a suspicious spot on my spine. Next Friday's PET scan seems horribly far away....I want to start Ibrance NOW! I hate knowing the cancer is getting another ten days to lurk about and I'm REALLY hoping it will make the effusion go away. I already had it drained once and don't want a repeat.
Did anyone else have a pleural effusion? And does anybody have advice about what to do or expect during the first few weeks of Ibrance?
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Got a call tonight that I need to go in tomorrow at 11 to the hospital for a third blood draw this week to check neutrophil numbers pre surgery on Sunday. Monday I knew they were going to be low, Thursday at pre-op I had them check again and while they didn't give me the number on the phone apparently they are still not where they need to be for the surgeon. I did raise the question of doing the injections two weeks ago but those were waved aside so... here we sit. 50/50 chance this doesn't go ahead on Sunday which sucks but so long as it happens soon, like sometime next week, Ill be ok. I can't do another stressed-out week like this one and I have nothing left in the house to clean!
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Parakeets (this applies to Lauri too) - Welcome Welcome to the thread!
What to expect with Ibrance. I've seen from your signatures you both have done AC+T. Don't worry, Ibrance is not like that. I came off heavy AC+T chemo only to find myself here so fast and I kept thinking Ibrance would be like that. Nope, not like that. You'll be taking it with an AI (Femara, Arimidex or Aromasin) all are basically same except Aromasin works a bit different and has a steroid component to it. Ibrance side effects:
-You may notice during first cycle your mouth feeling dry - I keep sugar free candy or tic tacs in my purse to suck on every once in awhile - dry mouth was worst first 3 cycles in and now is mild to moderate.
-Constipation and other gastrointestinal issues: Having prune juice or a high fiber cereal in the morning around is essential to avoiding Lamaze labor breathing on the toilet later. This hits people differently. Just be prepared for things to go solid to liquid and vice versa when it comes to toilet duty. There kinda isn't a rhyme or reason to it but it does tend toward the butt cork stopped up feeling so think ruffage!
-Be prepared for legendary colonoscopy worthy farts - seriously. I'm kinda famous for taking humor in this particular side effect - you'll see what I mean when you start. Not particularly potent - just really really windy.
-You may or may not notice mouth sores/canker sores in your mouth. Peroxyl rinse by Colgate helps alot with those.
-Fatigue - you'll definitely feel tired.
-Hair thinning/brittle nails - your hair will thin but you'll keep it. You may notice your finger and toes nails to be a bit more brittle - may see white lines in them etc. Some take Biotin supplement to help with this.AI Side effects:
Sore joints - enjoy hot showers/baths to combat this
mood swings/crankiness - not fun but you learn to manage
hair thinning - may notice alittle extra hair in the drain
Weight gain - you will gain a bit on this - everyone is different
Vaginal dryness - I haven't found a product yet that helps with this
The first few months I had trigger finger and stiff hands and now I don't
hot flashes - I still get these and sleep with a light fan at night in the winter and a fan on high plus the air conditioner in summer.All in all its doable and for me a much better experience than chemo. The emotional part I think is hardest and this thread is very supportive in that regard. Don't worry about having to wait to take it. I had very extensive bone mets that were growing when discovered during radiation planning and I had a several month wait to be able to start Ibrance/Aromasin because my ovaries wouldn't shut down and I had to hunt down surgeons etc. Even with that wait we were able to get things to halt growing shortly after taking Ibrance so it can work fast, hang in there!
Anntop, Lemon, I know there are others newbies, forgive me, how's it going?
Welcome newbies to the thread - ladies here are knowledgeable and friendly so don't be shy or be afraid to share openly and honestly- we get it - welcome to the Ibrance Dance
Sondra - Oh no! I hope your still good to go for surgery. I pray you aren't driven to another week of cleaning due to incooperative neutrophils - you'll have a truly sparkly house complete with angelic choir awe music in the backdrop if your forced to wait longer. (I clean stuff too when I'm stressed).
BAP - thinking of you!
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Rabbit is spot on with the sx. For me, about 8 prunes a day keeps things moving fairly well. Nausea is another for me. I can eat, but nothing sounds appealing. My hair is extremely thin. It never really came back normally after a/c t. I just asked my dermatologist thisweek if anything I could do. He suggested rogaine, but said if I stopped I'd loose whatever new growth I gained.
Sondra, I hope it happens, if not , my house needs cleaned. Weather is pretty nice now, 5 minute drive to beach
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Rabbit, thank you. It does feel good to be able to eat.
BAP, thank you for the update. I do remember when I had a biopsy, I didn’t come off the Ibrance. Not the same, but I thought I’d let you know.
Sondra, I hope you get to have your surgery.
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Sondra, I hope your bloods are what they need to be, and you can get going as planned.
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Hi all,
welcome to Ibrance Lauri and Parakeetsrule. RRabbit gave you an excellent recap of the Ibrance experience:) All things considered, it has been an easy drug for me to tolerate. I did have the dose reduced twice due to low neutriphils (very common side effect) and have been on 75mg since January 2021. I am on my 25th cycle right now!
SondraF, I sure hope you can have your surgery as scheduled.
B-A-P- I came down with a WICKED cold late Wednesday. I am not sure where I got this and I have not had a cold or flu since Covid or since my stage IV dx 11/2019. No fever, just very sneezy/stuffy and sinus headache. I have continued to take my Ibrance since I don't have a fever. Hoping tomorrow is better. Due to my cold we had to cancel our Thanksgiving plans with friends. I am thankful that I wasn't hosting and of course our friends understood. I feel like since Covid people are more aware and don't want people with colds at the office or socializing, which is a good thing! However, I did no online shopping or cleaning up at my house today, just rested and hoping this cold gets better soon.
Sad news, I heard this morning that a college friend who just turned 56 died in her sleep a few days ago. She was really healthy, active, beautiful and it's a shock. I hadn't seen her in years as we live in different states but enjoyed the occasional correspondence via text and loved seeing her family posts on social media. Sounds like it may have been a brain embolism but we don't know yet for sure. Just a reminder to hug your loved ones and pets and try to enjoy every day!
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Parakeets-I had severe pleural effusion when I started on Ibrance. I had a catheter inserted and drained my pleural cavity 3-4 times a week. Fortunately the Ibrance really worked for me. It immediately started drying up the effusion-I still needed the catheter for about 6 months but then was able to have it removed. Hope the Ibrance works well for you. I've been on it now for over 5 years at 125 and now have no serious side effects. The first 3 months were the hardest for me-I lost some hair and had a lot of fatigue, skin sensitivity and dryness. My recommendations are to drink a lot of water-aim for 72 oz a day and exercise to the extent you can. My first few months all I could do was take short walks with trekking poles but it helped to regain my lung capacity and strength. Get as much rest as you need and then get up and go outside if you can. Watch funny movies so you don't fall into too much of a funk. I hope the Ibrance works really well for you.
Sondra-Hope that you are able to have your surgery.
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Thanks Aprilgirl
So far so good for me. My son is basically better but has that lingering cough. We kept him home for an extra day just to give him a little more time to recover. Plus since COVID , schools are pretty strict and rightfully so but thank goodness they recognize that post viral coughs in children tend to stick around. He had a negative COVID swab so I’m not too worried.
My husband is still miserable. I’m hoping that if I haven’t gotten it by now, that I won’t get it period but who knows.
Sorry to hear about your friend. It really goes to show how unpredictable life can be.
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Success! (sorta) My Ibrance is in the mail! Went over instructions and SE's with the pharmacist by phone, will do a Zoom consult with BC clinic nurse when the package arrives to get the same info plus scheduling protocol for blood tests and who to call in what circumstances if/when SE's kick in. So I should be actually starting treatment by next week! Bought prunes and wholegrain bread for the "cement" option, bananas for "sludge".
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Success! (sorta) My Ibrance is in the mail! Went over instructions and SE's with the pharmacist by phone, will do a Zoom consult with BC clinic nurse when the package arrives to get the same info plus scheduling protocol for blood tests and who to call in what circumstances if/when SE's kick in. So I should be actually starting treatment by next week! Bought prunes and wholegrain bread for the "cement" option, bananas for "sludge".
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I second the welcome to the new-to-ibrance folks, this is a very supportive, real, honest thread of amazing people who have definitely helped me this year. It is poopypants ridiculous that any of us HAVE to be here, but the company makes the journey feel less scary. There's even laughter along the way. And toots!
(The only recent, mildly humorous toot story I have is when I went to BevMo on a weekday, mid-morning, and let loose a rather sputtering old-car-with-several-pistons-misfiring kind of toot, thought no one was around, and of course, OF COURSE, a stockboy was rounding the corner with a stack of colas at that very moment. I said, "Hiiiiii!" in a high-pitched voice and skedaddled out of the root beer aisle.)
Spookiesmom, are you thinking about trying rogaine? My hair is definitely thinning more. Let us know if you do, I'll be curious what you think.
Aprilgirl, what a shock about your friend. I'm so sorry. You are so right, hug the ones we love.
B-A-P, hope you don't catch the cold that your family has! These days any cough or respiratory symptom is just so scary.
KBL, having more of an appetite is a wonderful thing, hope you can enjoy some delicious favorite foods of yours.
Katyblu, congrats on the good news with your recent scan!
Rabbit, how's your pain level, I'm hoping it's not any worse. Thank you for posting about all the possible Ibrance side effects, you are so kind and generous with helping others.
As I have been for this entire year, I'm so grateful to everyone who posts here. I talked with my MO today and let her know I've been having recent lower back pain, and even though I'm pretty sure I know what caused that (digging up stuff in the yard for 2 hours), I of course get scared that any new pain is progression. She asked me lots of questions in her attentive yet relaxed manner, and said we will keep an eye on it, doubts that it's cancer, but will get me in right away for a scan if the pain gets worse. And of course hearing her say that, the pain is already less. The weight we carry with this MBC is unreal at times, you all help so much in lightening this load. Love you!!! ❤️
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Thank you, SF-Cakes. If only I liked food to begin with, but I am so picky and can’t eat any spices. I have way too many taste buds, and even a sprinkle of pepper is too much. Lol. It’s plain-old meat and potatoes for me, but I don’t know any different since I’ve been this way forever. Lol.
Aprilgirl1, I’m so sorry about your friend0 -
Amen to “poopypants ridiculous that any of us HAVE to be here“!
And Rabbit - I love Mrs Doubtfire! What a gem of a creative, funny, non violent movie.
I had so much fun at our virtual campfire/hayride that I was wondering if anyone is up for a horse drawn sleigh ride complete with hot chocolate.
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thanks cakes ! So far so good but my husband is not on the mend. He’s miserable. My son is back to himself but was still sent home from school due to post viral cough. If I’m expected to keep him out until it clears completely I might as well pull him until spring. They both were tested for COVID and both negative. I still don’t want it though. I’m hoping If I haven’t caught it yet , that I won’t. The longer it takes the further in my cycle I get and the less immunity I have. So I would appreciate That if I’m meant to get it, it happen sooner than later and get it over with.
Spoke to the thrombosis dr today and he said no to blood thinners for the clot. He said the CT no longer shows a clot , even though my other drs have said that you wouldn’t be able to visualize it on a regular CT. Regardless he said because I already had a near fatal bleed, the risk for it happening again is too large and the clot , if there, will not travel anywhere. We were under the impression that most of my ascites were from the clot mainly , but I guess it’s just my poor damaged liver. Hoping the ibrance works and dries it up. I’m happy with his recommendations though. One thing off my plate.
RK- a sleigh ride and hot chocolate sounds like a dream0 -
RK, yes yes yes to the sleigh ride! I have many, many scarves and hats to help keep everyone warm. My colleagues joke about how I am often humming the song Winter Wonderland, and I am letting you all know that I'll be singing it at the top of my lungs at some point during our ride! Um, who has snow (since my location has none, lol)?
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RK2020- sign me up for the sleigh ride ! I love a good sing along so SF Cakes I'll sing Winter wonderland with you! Happy to bring some Kailua for the cocoa or just excellent chocolate to eat
I have my qtrly scans next week (12/08). My cold is better but has settled in my chest so I have a slight cough and am phlemy. Y'all know exactly where my mind is wandering with scananxiety....my ear worm today is Crazy Train , Ozzy Osborne . Feel like I'm on a crazy train waiting for scans but will replace the song with Winter Wonderland .
No snow here and we have a nice sunny day in Seattle
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SF-Cakes, not to spoil your Winter Wonderland song, but my DH's sister and her husband have a version of that song. It's "Walking 'Round in Women's Underwear". It's really pretty funny. Hope I didn't ruin that song for you, but I dare you to sing that one out loud at the top of your lungs! Go for it, I say!
Cheers,
Carol
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