Ibrance (Palbociclib)
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I was feeling 80's inspired so, here we go... with my flow....:)
Time after time I realize that Ibrance has blinded me with science and the side effects can make me mony mony mony and sometimes it gives me bette davis eyes with the fatigue but then I remember its time to get physical and what a feeling it is when my bowels cooperate. I keep telling my oncologist to call me, call me anytime to help calm my tears for fears. But then I realize I'm the eye of the tiger and not to lose my grip on the dreams of the past. I'm not free fallin' so Don't stop Believin. Sometimes the medications keep me up all night long, sometimes the stresses of cancer life can have me dancing on the ceiling. People tell me I'm going to beat it, beat it, but I think their just from Xanadu. Cancer certainly is a maneater, it needs to show me some respect, I got a body to protect. Cancer wants to hold back my years, but I can't go for that, no can do. Even tho its a 9 to 5 job, I'll walk like an egyptian and footloose at the thought of stable scans. I'm so excited. 99 Luftballoons. But I know things can change in a heartbeat, Wham! You dropped a bomb on me baby. Then its total eclipse of the heart. It spins me round, round like a record baby Right 'round, 'round, 'round. Careless whispers from those who are uniformed make me an owner of a lonely heart. That's the way you make me feel. Lack of estrogen makes me hungry like the wolf. You wanna be startin' something? Take on me. Can't you feel the rhythm getting stronger, Conga. I can't fight this feeling anymore so I'm dancing by myself. I'll take these broken wings, while I'm living on a prayer, and walk down to electric avenue and then take it higher. So walk this way. Because I gotta have faith and a glass of red red wine. I've got to shout, shout, let it all out and straight up tell you I love rock and rock so put another dime in the jukebox baby as I'm dancing in the dark. Bust A Move.
But Ibrance is the right stuff, baby, its the reason why I sing this song. Rock me, Rock me Amadeus.
KBL- I feel really bad when I need to raise my voice dealing with people on the phone especially when they say exactly what the lady said to you "I know how you feel". But sometimes you have to to get people to understand. I try to give benefit of the doubt on a phone call, they get 2 tries, if they talk over or don't listen, deep breath, try again. If not, then I put my foot down. I had to with the specialty pharmacy once when they kept calling leaving messages to call them back a couple days in a row. I thought it meant something was wrong with my prescription or it was something concerning it as thats the only reason they call so kept being transferred to this lady who would just put me on hold forever and then Id get a she'll call you back reply. Come to find out it was someone who wanted to "chat" about how "Ibrance was going for me" - I told them to please take me off the list concerning phones calls of this nature, How its going is between me and my doctor, I had already told someone recently I didn't need to speak to a pharmacist." "I understand" she said. No you don't I said back. I have stage 4 cancer and when I get multiple phone calls from my specialty pharmacy asking me to call them, I automatically think something is wrong, do you understand, that's scary". "Yes Ma'am....". They stopped after that.Sunshine - I LOVE IT. "Tarp your Load". LOL
I think I might have to borrow this! Spookie, I've seen my chair remote flashing along with hearing it humming/vibrating in the dark. Kinda strange to feel like batteries not included type stuff is going on while I'm up on my 2nd bathroom trip of the night. Turn light on - Cats getting a heated massage while I'm sleeping. Nevermind the chairs for me cat!
Positive - I'm on cycle 24 right now, several at that point and a few even in the 40 cycle range (Holy cow, look at Ciaci!). So yep, many have done, do well on the drug. First pill is always the most anxious time. Scared how you'll feel on it down the line. I've been on harsh chemo so overall I find this drug very tolerable. You'll learn to 'dance' with the drug and adjust here and there if needed. When I first started I was really having trouble walking/headed toward a wheelchair fast, but after a bit walking become easier and now I'm walking for the most part unassisted with help needed for alot of long walking, like say a park etc. BevJen and Sondra I believe both had surgeries/were on crutches for a bit and their all healed up now. Its not easy to say or hear hang in there, but hang in there. Welcome, Welcome
Katy - LOL, sounds good to me! Woo! That's what I'm talking about! 1 cycle already under your belt, here you go on 2! Happy to hear Ibrance and you look like good dance partners
I can't say the emotional cycles completely go away, but over time you'll be able to swing with them alittle better. Up and down like a rollercoaster is accurate. But, when things are up, savor savor savor. Its about letting yourself feel and work through everything your feeling but also letting yourself LIVE and enjoy things too. Its okay to laugh AND cry RK - Scans sound good to me, Verzenio will mop up the extra stuff and rads you just did still has benefit to be seen as its still doing its thing even a bit out from it. 1 pill in. Verzenio kick ass. Lets hope Verzenio sics cancer like Stand by me Chopper likes to sic certain parts of the anatomy.... Lets send the cancer running for the hills!
Kale - agreed 100%. Just something thats bothered me lately, especially when I see everything everybody goes through on here.
Tanya - waving hello!
Aprilgirl - I'm really glad you had a good time
I don't talk about it really outside maybe 2 or 3 people besides beloved and mother in law and that's still pretty briefly. Like you keep Stage IV talk to the "needs to know" if possible. I'm most open and candid here. Get too many deer in headlights looks when i try to explain why I still have hair etc. Plus all the ghosting too. For Halloween I should dress up as the ghost of christmas present just to have fun with it. Cakes - hope CBD is helping with the sleep. I did hear that cherries have the highest level of melatonin of any food. Maybe some cherry juice might help too? I speak to it being potent because I had some pot roast, mashed potatoes and asparagus with onion gravy at a friends outside on the patio recently and I was offered organic cherry juice with it and ice water. Cherry juice had me wanting to take a nap pretty pronto.
Ciaci - I love the Dory nickname. It does feel like that doesn't it, lol. Agreed, as David Bowie would say..."Lets dance!" Or sing "Dance Magic Dance" in Labyrinth. Ibrance does do its magic. "It's Magic...." Dot - Madtv. Its good to see you checkin our resident seasoned pro in all this.
Hugs ladies
Haven't had a Cure-ious or Pat update in a bit. Tinkerbell- I'm moving my Zometa to every 6 months now. I want to move scans every 6, but she isn't comfy with that yet. Another name not seen in awhile, thank you for checkin' in. Congrats on 2 years under your belt!!
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Rabbit, it makes me feel better knowing I’m not alone with having to tell people no, they don’t understand. I know they feel they’re helping. Frustration can definitely get the better if us with what we go through.
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Hi there,
Just started ibrance and fulvestrant last night (will update my signature) - just wondering if it has worked long term for people or atleast slowed things down for people a little bit. i was in the hospital with a failing liver and ascites for five weeks. I had varicie bleeds that almost killed me. And so they didn’t want to put me on chemo right away (I had one dose of cisplatin and gemcitabine in hospital before crap hit the fan) as they felt like it would kill me faster. I also have a portal vein clot and of my counts can stay decent on I/F then I will get some small doses of thinners which will hopefully stop the ascites as well (I have a drain for home now )
I convinced them to let me take I/L but they didn’t seem too optimistic but they also told me I was dying twice and just the other day my blood work was so good that she said “it’s amazing you’re amazing please keep doing what you’re doing “
So I guess I’m just looking for a little hope !
Thanks so much. !
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Tinkerbell, congratulations it is great news- 6 months scans. I think your MO mentioned prolia (also denosumab), for MBC s it’s prescribed when bone Mets are stable/ towards healing, to prevent early osteoporosis etc.
ciaci, thanks for your uplifting post. Enjoy your trip.
Rabbit, well said, couldn’t agree more. I feel I transformed to a saint over night as my friends (those very few who know my prognosis) keep asking to pray for silly things....
I had a bad experience last month fainted after zoladex injection, a new nurse injected fast and deep, usually the injected area is sore for a couple of days but that one took several days and bruised. every time I should tell them swab the area twice, pinch the skin, do angle... bynow I am an expert!! Next time I am going to try myself, I can do better less hurt, joking but honestly do they let me??
Bev, glad to read your post, I hope you are doing well.
Positive, I second ladies, physical therapy is a must. PT helped me from bedrest to standing, and from walker to walk independently I mean walk without support.
Hello everyone 👋
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good evening ladies
Congratulations spookiesmom
on great scan.
Ciaci good to see you and congrats on dancing 4 years! 55 cycles. I started in June 2017. I’m on 100 mg and faslodex.
Rabbit that latest post of yours had me back in the day. You are clever and entertaining lol.
BAP I hope ibrance works well for you. Many people have gotten long terms with pretty good QOL on the ibrance combo.
I want to mention everyone by name but I’m horizontal now writing from memory, just didn’t want to go to Bed without responding bc by tomorrow we’ll be on another page.
Take care all
Tany
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Rabbit: Thanks for the above 80s flashback. I'm truly an 80s gal. Loved dancing and roller skating to several of the above songs during my adolescent years.
Snowdrop. Yes, the MO mentioned Prolia. Not sure if I'm ready to jump on board with that suggestion for the bone mets. I need to read up more on this issue. I'm managing on the Xgeva every 3 months. not sure what prompted the MO to make that suggestion. I will follow up during my next appointment, which is in 3 months unless new symptoms or blood work spirals downward. Surprisingly MO kept blood work monthly, I was waiting for this shoe to drop.
Have a good Sunday (funday). Planning to attend a fall festival today (favorite time of the year). Love apple dumplings and apple cider. (additional benefit may relieve constipation, I know TMI, right?, lol )
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Tinkerbell…there’s nothing like a good old fashioned apple festival to get things going. 😂😂😂
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Rabbit wow I love it! 80s music is one of my faves! I’m currently riding a high of a few good days so I’m going to hold them close and try to keep rolling.
Ciaci, that’s so amazing! It’s so helpful to hear positive stories from women still on their first or second line and still thriving! Wishing you so many more cycles. And I totally understand the Dory nickname, Ive found myself forgetting simple words here there which lead to some sometimes hilarious, sometimes embarrassing substitutions.
Tinkerbell - Congrats on the 2 month extension for scans! That’s so great. But I do understand the anxiety. I’m sure once you have some time to think things through and some breathing room, your docs decisions will sound better.
Sunshine, I told my husband about “tarp yer load”, he thought it was hysterical!
KBL & Rabbit, I totally understand about the frustration with people who say they understand. The other day I had someone at work (no one I know) ask me why I was taking the elevator down one floor instead of taking the stairs. I just looked at him until he started yammering something about his knees hurting sometimes too. People can just suck….
Second cycle going okay so far. Happy thoughts to everyone
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Katyblu, sometimes people just don't think. I usually can't think of an immediate response to a comment like that. Later, I'd wish that I had said something like, "I'm dying of cancer" just to see the look on their face. Right?
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Katyblu, Ugh. Some people just don’t get it. I love Sunshine’s suggestion. He would have been like a deer in headlights
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Tinkerbell, I was on Xgeva monthly for the first six months, then oncologist switched me over to Prolia (same med, lower dose), which is one shot every six months.
I've had a PET scan every six months for three years now; originally doc visits and lab work were every three months, now they're the same week as the scan, so every six months. Onc. wanted to push it out to 8 months, but I told her I wasn't ready, so we compromised and the next scan is scheduled for just under seven months from my last one. I fly back to NJ from FL for my scans, labs, and office visits, so we scheduled them for the week of my daughter's birthday in Feb, since I'll be here anyway. Until then, I put it out of my mind as much as I can!
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Rabbit, I was singing along with your fantastic 80's post! That was, like, totally awesome. When I left my diagnostic mammogram-ultrasound-biopsy, after the doctor said to me, "this is something bad" (and yet neither of us said the word *cancer*), I blasted Rebel Yell and Dancing With Myself as loud as I could, and sang-screamed along with Billy all the way home. Peter Gabriel's album 'So' helped me get through parts of chemo. I still love all those tunes from my high school days...
The CBD/THC tincture is not helping at all with sleep, but I am noticeably more relaxed. So that's quite nice! I had been taking melatonin so perhaps I'll try the cherry juice, that sounds delicious. Also met with a pulmonologist who said I had very, very minimal radiation damage to my lungs and she thinks my tickly throat and occasional dry cough is post-nasal drip - wants me to take an allergy med that may sedate me, lol - bring the sedation ON!!
Just ordered this new little sculpture for our backyard, it's beautiful October weather here and I've been getting everything trimmed back and tidied out there. I love any statuary of an animal reading a book, reminds me of reading to our cats when I was a little girl, and trying to read to the squirrels, birds, and deer outside. The squirrels were intrigued, the birds were always talking over me, and the deer listened respectfully, from a distance. I grew up in the woods, by the way - this wasn't in a city park! 😄
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Just saw this in Practice Update re MBC:
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Joyner - I don’t see a link.
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I’ve only been on ibrance three days and the fatigue is already kicking in. I was a bit tired to start after being in hospital for 5 weeks but I feel extra tired. Is it too early for ibrance to be contributing? I also had fluvestrant Friday . Does it ease after a period of time ?
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BAP - did they start you on 125? I can't say I experienced fatigue that early, it took until the end of the month for my neutrophils to tank on that dosage. Usually the first week is ok and things only start to get iffy around week 3. Could be another cause.
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SF Cakes - I love that statue! Did you order it online?
RRabbit - LOVE your 80's post. You are so creative! The things some people ask for "prayers" about is mind numbing.
Ciaci - awesome to hear you are doing well @ 4 years on Ibrance!
Tanya - good to see your post, you've been on Ibrance/Faslodex since 2017?! Awesome and encouraging.
Tinkerbell, good to hear that you are doing great @ over 2 years!
Snow-drop - so sorry you fainted after the Z injection - we are the experts at this point on how we deal with treatment - hope your next injection doesn't make you pass out.
BAP - I have been on Ibrance/fulvestrant for almost 2 years and it has worked well. I was fatigued when I started, but it's my stage IV "first line" and I had significant fatigue when I got dx stage IV, so didn't notice Ibrance adding to it. I started at 125mg but had 2 dose reductions due to low anc/ white blood count. I will say that I have more energy on the lower dose. Hope Ibrance/fulvestrant works it's magic on you and you feel less fatigue soon.
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I’m on 100 mg to start as I was in the hospital for five weeks. I did have trouble with counts but I have three blood tests prior to starting Friday that showed platelets were completely normal and hemoglobin was 109 and I think normal is 112 - in hospital my hemoglobin was always going up and down. But it had stayed stable. But perhaps that could be contributing. I’m wondering if the fluvestrant is contributing as well since it’s an injection and it is a side effect. I’m on a bunch of other meds due to a varicose bleed (which I had in hospital ). So I’m wondering if it’s all contributing. I assumed it would be too early for the Ibrance but maybe not too early for the fluvestrant.
Too many variables. And maybe it’s just a crappy day.
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i should also mention I was bedridden in the hospital so my legs are still gaining strength and I’m not sleeping well. So there’s also that.
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oh BAP I’m sorry to hear you’ve had such a hard time lately (putting it mildly). 125 mg simply kicked my butt and I had a plethora of side effects within the first 14 days. 100 was easier but I had to go down to 75. Since you are already on 100, you are likely battling fatigue from several sources. Ibrance may have just been your last straw. Hang in there. I hope you feel better soon. 🤞🏻
Similar to the prayer for minor things, my best friend texted me today to tell me about her bee sting on Sunday evening. She went on about how it hurt more then she remembered and it’s still a little red. I read this as I was in bed in the middle of the day with cramps, burning innards, fatigue and diarrhea. I know this isn’t a contest of who is sicker or in more pain and a good friend should be empathetic but dang sometimes it’s hard when you feel like…💩…sh*t. So I just sucked it up. She never asked how I was feeling. I never offered any details. Sometimes this disease makes me feel so alone. My husband is caring and understanding but only you guys get it.
SF-Cakes - love the statue but for a different reason. Some of my happiest memories are of snuggling with my son and reading together when he was little. ❤️
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RK2020-
Sorry...I cut and pasted the info and it didn't show up. Try this link. Practice Update published an article noting that Palbocicib and PPIs shouldn't be prescribed together. The PPI diminishes the effectiveness of the Ibrance.
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ughhh I’m on a ppi but it’s bc I had varicies bleeding so it’s not something I can just quit. I’m on a tablet if ibrance vs capsule
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I’m also curious if anyone has started Ibrance/fluvestrant with lots of Mets? I have lots to the liver . I had one dose of cisplatin and gemcitabine which seemed to show improvement in one dose. But due to unstable counts and varicie bleeds which they think chemo sped thst along, they said traditional chemo may kill me faster (and basically I had no options). I asked about I/F and first they said it probably wouldn’t help fast enough but then my onc came around to it and thought it was a good idea even if the tumour board didn’t. I think it’s only because I’ve been surprising them with how well I’ve turned around. it’s possible that I/L may stabilize me and eventually I may be able to go back on chemo if this doesn’t work well ( though hopefully it does!).
Just curious if anyone has been in a similar situatio
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I dont know about lots of individual mets, but i have met "blobs" as I call them in L3-L5 and sacroilliac (radiated) and of course primary and its side kick, lymph node. Scans after first two and a half months showed considerable healing in the spine mets (which had never been painful) and by six months I also showed about 40% reduction in my primary. After that first scan oncology were thrilled at the level of response in the spine - while I wasn't shown my scans initially when I was finally able to see them its amazing I wasn't wheeled in for spinal surgery.
Its not quite the same as liver and Im not on fulvestrant, but Ibrance can work pretty quickly - not just fro my experience but from others I have read on these forums.
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sondra - gotcha. I wonder if anyone else will chime in. My drs thought it would work too slowly. But I’ve always been an exceptional responder to treatment -hoping that doesn’t change now lo
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Hi BAP
I've been following you on the liver thread and others who've moved on from Ibrance, NicoleRod and I are also friends so like to keep tabs there. To say you've been through a lot of crap would be an understatement and your Dr is right about you, you ARE amazing. I just wanted to chime in about Ibrance. I have a mutation in breast cancer called KEAP1. Its rare in breast cancer, single digit rare (I have yet to meet someone with breast cancer with this yet). Those who have KEAP1 in lung and stomach cancer don't respond to cancer treatments at all. Not much is known about it in breast cancer so when I started Ibrance pretty quickly after failed AC+T I thought I was screwed.... I thought I was so screwed that the light from screwed would take 1,000,000 years to reach earth. My cancer was growing and nothing even aggressive chemo seemed to make it behave. I started Ibrance with a skeleton full of mets....ALOT...and here I am 24 cycles in and its been holding things stable even tho it took a little bit of time and my walking started being effected a bit before it kicked in. Ibrance can work miracles, it did for me.
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RhosgonelRabbit - thank you so much for this . I know when things are aggressive they like to hit it hard and fast and I’m just not a candidate yet. This is quite encouraging to hear. Thank you for chiming in! Yes it’s been a tough few weeks. If I can remain stable in counts with ibrance they’ll be adding in a prophylactic blood thinner since I still have a clot in the portal vein. Gotta deal with one problem at a time. Sometimes I forget I have the stupid clot
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BAP - You are most most welcome
My MO had a feeling I was presenting aggressive when I was early stage so we hit it hard and fast...it wasn't until my Stage IV diagnosis a short time later that Foundation One confirmed it was both aggressive and rare. I figure if it can help me for crying out loud when KEAP1 in other settings produces zero results, Ibrance has the potential to be a wonder drug and produce amazing results. Also, I'm not even on highest dose right now, I'm on 100mg. I was on 125mg for 12 cycles and all the rest I've been on 100mg. So even on lower dose I'm doing pretty well. The emotional side of things, eh, its hit or miss, you understand. Wishing you all the best and that not only things turn around for you but that Ibrance does its thing quickly for you too
Love to you ladies
Fingers and mind too tired to write much else today. 2 nap day again today. 0 -
Absolutely The emotional side is a rollercoaster. I have a 6 year old and he literally keeps me fighting to carry on. He's my reason to be. I let myself have my down days and try to move forward. I was super health conscious for the last three years and radically changed my diet, exercised through chemo, did the alternative stuff with conventional, and now I'm forced to be a bit more lax. I need to gain weight and 5 weeks in the hospital has caused weakness in my legs. One day at a time. We will get there.
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BAP I had Mets to spine, ribs, ovaries, hip, uterus and abdomen. I had surgery on fractured spine twice and a full hysterectomy. Started ibrance faslodex zometa and it worked. I started at 125 but didn’t last (about a year) went to 100mg and been on that dose since June 2017. I also had radiation to all of the areas above in August of same year.
I hope you get even better results. Hang in there!!!!
Tany
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