Ibrance (Palbociclib)
Comments
-
Good morning everyone! I took some time away from replying because I had family in town and the stress was killer! I read when I had some free time but I feel like I'm not caught up and may have missed some news. Sigh... so my brother, SIL, and 4 yr old nephew were here for a week and man, that was energy I did not have! And it sucked to have people in my house for so long.... I thankfully have a few days of quiet before another round of visitors on Saturday. Ugh..... This time it's my mom, stepfather, and grandmother. They're supposed to be coming to support me and spend time with me, but.... My mom is constantly sick and usually gets up around 7am and gets back in bed around noon. (I just recently learned she was told to eat gluten-free 10 YEARS AGO and doesn't. Guess why she's sick?) My stepfather will be remote working. And my grandmother should be resting since she broke her pelvis about 12 weeks ago but you can't make her sit down for anything. So how is this support? I should've put this in the STEAM ROOM, sorry. I just feel like I will be so stressed next week.
But on to better thoughts and topics..... I hope all you ladies are having a wonderful start to December. I am so thankful for the support I get here. You all understand me and what I am going through. And I hope I offer the same support to you.
Aprilgirl - in your pocket for your scans! Wishing you regression at beast and stability at worst.
Rabbit - I hope your pain has not increased. I've been thinking about you and sending you good vibes!
B-A-P - I'm glad your son is feeling better! I wish the same for your DH. Hoping you can make it through your second cycle.
Sondra - I hope your recovery is going well!
0 -
Fish and guests both stink after 3 days.
0 -
This may have been covered somewhere in this thread - but has anyone experienced depressed mood, crying, being emotional the week you are off Ibrance? I'm only in my first cycle, and this is my week off and I am just crying for no reason at all. Maybe just looking for a reason for everything these days.
0 -
OMG that made me laugh out loud at work! That is SO true! Thanks
0 -
Puppers, don't worry about being emotional, you are new to the mbc game! My first cycle I cried everywhere - when the pharmacy was slow getting my drugs, the first pill I took, waiting for radiation, that first scan. It was almost like a weird pms. But that passed after a while. Its probably not the drug but the diagnosis!
Getting out of hospital tomorrow and so ready to be home. I walked and showered today and since its so dry in here, rinsed out my bloody jamy top (ripped out a hand cannula during first shower) and it's totally dry and clean now. Thank god for cotton twill. Maybe did a bit much as I'm quite tired tonight but thankfully tomorrow is the last day of poking for 9 days as MO doesn't want to see me until 13th. I guess that's a month holiday from ibrance but I may have needed it!
0 -
Sondra, I'm so glad you get to go home. I'll bet that shower felt heavenly!
Carol
0 -
Puppers, thanks for the heads-up. My first Ibrance just arrived, so I will be on the lookout for possible emotions on the "vacation" week.
0 -
Thanks Sondra!
0 -
Sondra - Yay for getting out of the hospital! I bet being back home in your own space will feel heavenly! Sending good vibes
0 -
Hello, I have stage 2 invasive ductal breast cancer. I know that this forum is for stage 4, but my treatment has expanded to include some of the same drugs you have been discussing so I'm hoping to join in. I completed 8 weeks of AC chemo followed by 12 weeks of Taxol, then a lumpectomy and an axillary node dissection. After completing 6 weeks of radiation I expected to be "done" so I was devastated to learn I am faced with more treatments. I am currently taking Letrozole because I am post menopausal, and though I am not happy about them, I have adjusted to the side effects. I am struggling with the 2 year round of aromatase inhibitor I have begun. I was entered in a trial for Verzenio but the side effects were so severe I only lasted 5 days before discontinuing. I have switched to Ibrance, and am starting on the lowest dose, with the doctor's goal of increasing the dose once I have adjusted to it.
I can manage most of the chemo like symptoms pretty well. Constipation/diarrhea, headache, insomnia, taste changes, fatigue, nausea, even hair thinning (so hard to loose what little I have grown back and really miss my long red hair). My biggest challenge is the overwhelming emotional/hormonal reaction. It is not as severe as it was on the Verzenio, which was almost debilitating, but I'm struggling with it. I cry at everything and the emotion is exhausting. Just the thought of my husband walking into the next room will start a round of tears, and once I was overwhelmed when I needed to leave the room myself! It is very irrational and I don't know what to do to control it. I am wondering if these side effects will continue for the duration of the treatment or diminish as I adjust. What happens when the dose goes up? The thought of experiencing the side effects like Verzenio gave me is scary. I teach middle school and want to be able to continue working if possible.
I welcome any advice, or reminders to put my big girl pants back on! It is helpful to learn that others have experienced the same things, and I am encouraged to see how positive you all are when working through stage 4. I feel like such a whiner complaining about trivial side effects with a stage 2 diagnosis that has the gold star of a cure as my prognosis. How have you all gotten to the point where you can be so happy and accepting? I'm a smart lady but I feel so lost not knowing what to do, I need tools, strategy, the magic formula!
0 -
Reluctant Traveler all of us stage 4 ladies started somewhere. Unfortunately, some even started at stage 4.
I started ibrance after chemo so I have something to compare it to. Ibrance is definitely not as debilitating as chemo. Maybe you're having a lot of se's because you're already depleted from previous treatments back to back. They usually check your blood numbers after 2 weeks on ibrance which may reveal some low counts. The diagnosis, treatment, scans, dr appts. etc. all cause us to have many emotions. A lot of ladies on here are on anti depressants/anxiety meds. You may also consider going to a few counseling sessions because as much as family and friends are supportive there's no one who really understands the gamut of emotions that are experienced with this diagnosis. You are allowed to not be strong for everybody because right now you are in crisis mode. Ibrance doesn't usually cause complete hair loss just thinning and maybe texture changes. Definitely not the bald head that chemo gives you. Hopefully your beautiful red curls will come back soon. Sending hugs and encouragement. Being a teacher is such a rewarding career best of luck dear.
Tanya
0 -
Another MBC participant let me know that there is a study going on for MBC patients taking Kisqali, Ibrance or verzinio. They are paying $175 for completion of an online survey. they will also pay your spouse/partner. If anyone is interested you can contact them directly by email or phone.
Jane is jane@rchorowitz.com
Devi is devi@rchorowitz.com
And their phone numbers are;
(212) 779-0033 or (212) 401-7902
0 -
I had a bad emotional reaction when they tried to shut down my ovaries four years ago with Lupron. I'm probably going to have to do it again since my returned cancer is also estrogen positive, but knowing my reaction last time I plan to ask them to load me up with antidepressants and antianxiety drugs. Hopefully I'll be able to taper off them later. But no way am I going through that again.
Don't suffer when there are proven options to help! Think of this as the same as treating any other side effect that's affecting your quality of life.
0 -
Good point, Parakeet! I don't know why we think we just have to "suck it up".
Carol
0 -
I had no idea that ibrance could be prescribed for stage 2, huh. Why? For high risk patients?
0 -
Reluctant- You’ve been through a lot so far. That’s enough to make anyone emotional. I recommend counseling and/or antidepressants to help you. There is no shame in either of these. We have all been dealt a bad hand and should use every means possible to improve our quality of life. Be kind to yourself and get help. Hugs
SF Cakes - The last I read Verzenio was the only CDK4/6 inhibitor approved for early stage but that info might be outdated as there are ongoing clinical trials. Here is a quick read regarding the challenges of determining efficacy. https://www.onclive.com/view/using-cdk4-6-inhibitors-in-early-stage-hr-breast-cancer
0 -
This is just a test to see if my profile updates. I’m having issues with my profile update to Verzenio.
0 -
Reluctant, worry is normal - maybe not healthy, but normal. Ask for help if you need it. And be prepared for those (not here, of course) who will tell you, "Don't worry. You'll be fine." Ignore them and come back here to BCO to vent and share.
(((hugs)))
Carol
0 -
Tanya-Thanks for posting those links. Always nice to make an unexpected $175. Hope I can do it.
0 -
Even though I'm only stage 2 my cancer is extremely fast growing, which is why I'm on the Ibrance. My Dr. says the standard of care is changing to include the stage 2 in CDK inhibitors for at least 2 years after radiation to prevent recurrence. I know I'm not supposed to be in this forum with stage 2, but there is nothing in the others about the Ibrance/Letrizole treatments that is helpful. I will respectfully step out if any objections, and am grateful for your comments.
0 -
Tanya thank you for posting those links. Hopefully I can participate!
Reluctant, sorry that you have to be here with us. My first cycle on ibrance I was pretty emotional. Part of it was the dx itself and then I think the other part was the change in medication and all the new meds. I’m doing much better now though. But yes, there is no shame in getting help. I currently see a therapist and a clinical pharmacist
0 -
Hello ladies!
Its Dec already, I can't believe it. Pinching myself. My pain level thankfully has gone down a bit which is great but its been replaced with odd belly pain and "full feeling" bloating in the upper abdomen along with nausea - pain is mostly on the right upper and upper middle. Immediately I thought "Oh no, stopped up again" and had coffee with sugar free flavored cream and let the avalanche depart - not much to let loose so not sure whats up. Appetite is a tad off too. Stress? Possibly. Its wicked expensive at the grocery store lately, but have decided this Christmas will be a departure from the traditional meal. This yr, we're having steak, butcher twice baked cheese potatoes, homemade Caesar salad and and dessert - I'm leaning toward that Cannoli loaf Sondra posted earlier. Having a steak to me is a celebration - how far I've come which is further than I ever imagined and that I've gotten to a huge milestone - the big 4-0. Just thinking of that supper perks my appetite a bit but I feel full pretty quick lately. Still leaning toward stress but will keep an eye on things and let MO know if it gets worse.
I am particularly happy today because I will finally be able to fill 4 empty spots on my glass vanity tray. I collect antique perfume bottles and have for over 15 years now. Those spots have been filled with bottles/accessories I have that aren't of the era I'm going for waiting for the day to put the true vintages in their place. I had given up on filling these spots feeling selfish to do so considering the dx I have. I spotted some beauties lately for 1/4 of what each of them are worth PLUS I found a company Memorabilia piece of one of the specific vintage brand of perfume bottles I search for/collect. I collect from 2 brands but 1 mostly. It was like Christmas! Well, it is almost Christmas! It fills good that I will fill those spaces. These will eventually go to beloved's sister - she loves things like these and will take good care of them when I am gone, in the meantime, I'm going to enjoy the heck out of them!
Aprilgirl - hoping your feeling better from you cold! Had a couple days of my 6 time sneezes last week but went away with Zicam and OJ - no fever - just plugged nose - feel fine now. (I don't just sneeze once, I always sneeze 6 times in a row before I stop - was an interesting experience during the height of covid last yr when I was waiting in the car for beloved to get whatever gizmo he was getting in one of his manly man macho places and I dusted the console while I was waiting forgetting dust makes me sneeze. There was a guy next to me that was talking on his cell phone on the hood of his car - I started sneezing and counting at the same time - 1, 2, 3, waiting to get to 6. The guy next to me eyes got huge, looked at me and ran into his car and shut the door - I tried to tell him it was just the dust and not to worry - poor guy, I felt bad). So sorry to hear of the loss of your friend. Sometimes things just don't make sense and its shocking to the system as we try to figure out the whys and its even more of a jolt when we reach for the phone or begin to type a message only to realize they aren't there on the other end to answer. So very sorry. Indeed, love on our loved ones as much as we can while we can - furbabies included, including the one currently nestled in the blankets next to me doing her typical 'kitten purrs' - she's 2 but she still purrs like the little ball of energy we brought home- fast and loud. We are all there for pocket duty on the 8th - stable mable - stable mable - I'm saying it like a mantra!
Lauri - I laughed at the preparations for cement or sludge - lol - that's a great way to put it! You should be raring to go with first cycle soon. Did you enjoy the Ibrance 'welcome kit'? Did you get one? I got A pen, paper clump, a mini calender some other useless thingy. $20,000 medication and its like being given a gold star "Thanks for the money, Good luck and enjoy the worthless crap gifts but please do admire the pretty packaging of your new meds" OooOooOooOooo at the birth control packaging. Eesh.
Cakes - Your piston misfire toot gave me the giggles. Its never safe when we think its safe and whats worse is sometimes those toots can be very deceptive - meaning not its not just a toot but a thunderous warning something is about to give way and its a panic-ed maniacal turkey trot to the nearest point of relief. Been there. Done that
Concerning pain, I keep thinking each scan something will show what I'm feeling since pain seems to be sticking to me like velcro - degenerative stuff yes, lit up cancer stuff yes- but no movement in location or furtherment of known locations. We know progression is coming so when pain crops up or stays persistent it feels like we are living a modified version reenactment of the Verzion guy "Is this progression now??" - sucks. I'm glad you have an attentive calming MO who takes a watch and see approach yet also assures that if pounces are necessary she's willing to pounce. Hoping the lower back pain has ceased and any worry its caused can be tossed into a sea of forgetfulness.KBL- I was interested to read of your picky nature when it comes to food. Made me smile. Prior to marriage I was pretty darn picky. BUT I learned something in my adventures with food outside of what I grew up with and that is how something is cooked makes a big difference. For instance, I didn't know cooked eggs were supposed to be fluffy and have no skins on them so I avoided eggs and picked the egg off breakfast sandwiches for the longest time. When I took the plunge and tried them Aladdin's "A whole new world" broke out with in me
I've learned to branch out bit by bit but I'm still picky on some things. Beans, nope, won't touch them even tho their the magical fruit...the more you....holy cow...Ibrance...the more you take it the more you....Whoa...:) I say its okay to be picky- we like what we like RK - I saw Mrs Doubtfire in the theatre as a kid - there was a guy in the aisle over from me and my family by himself. When the cleaning scenes with Aerosmith jamming in the background came on that guy was jumping up and down in his chair and slapping his legs laughing so hard - it was great and it added to the enjoyment of the film - he did that in a couple more spots too - everyone clapped at the end. I'm on aboard for a sleigh ride with hot chocolate - I've got marshmallows and vintage hand muffs so we can look the part!
I'm for a nip of Kailua in there too in the hot chocolate - I think an ear blasting hiccup version of Jingle bells is in order if not only to entertain ourselves but give the wildlife something to talk about in their little burrows! Lets hope we don't sound like this guy tho....Sunshine - "Walking 'Round in Women's Underwear" - LOL - my favorite part of that song is "with little straps *tink* like spaghetti" - fun song
Katy - Sounds like your surviving the "support" merry-go-round/revolving door of visitors entering and exiting like a champ! You could always say you need a nap and escape for awhile
Its great to be around people but sometimes the idea controlled burst visits is tempting - Hey, hi, how you doing - for a couple hours and then your free - I am in favor of these. However, sometimes we must wade through whatever form "help" takes. Hang in there! Puppers - Yes. I'm not sure if its the Ibrance, the Aromatose Inhibitor or the fact my ovaries are gone - perhaps its all 3. But also some of it too is the diagnosis and your brand new into this. These feelings won't necessarily go away completely but you get to the point the crying spells lessen a bit and even if they come you learn to bounce out of them. This is new territory, don't be too hard on yourself and give your mind and body a chance to catch up to what's happened. Feel free to vent here or ask questions anytime - we understand
Sondra - It's gotta feel good - not only to get the tumor out but also to enjoy that first hot shower afterwards. I'm telling you it was like literal heaven being able to wash for the first time after mastectomy. Being sans tumor was also great - I desperately wanted that thing out. Happy healing. Definitely practice holding arms in front of you 90 degrees and to the side 90 degrees until they let you stretch up over your head- helps get range of motion back. You should be drain free in a couple weeks
Tanya - thank you for the links!
Reluctant Traveler - I'm going to write you separately in another post - don't go - stick around - I've looked around the forums and there really is nowhere else for you to get the support you need on this drug - no threads exist in stage 2 or 3 forums. I just need a mini brain break - be back!
*I heard Ibrance is being looked at as kinda like possible aftercare for early stage breast cancer patients who've been through all the traditional therapies - they are trying to see if it prevents recurrence in high risk. My MO had mentioned Xeloda after I healed from surgery when I was Stage 2B (Stage 3A according to breast surgeon) since I had a T3 lesion (very close to the chest wall) but also mentioned Ibrance possibly. Would be interesting to see if it does stop things from progressing in early stage. Will check out that link RK!
Love to you ladies!
0 -
OMD someone should shoot that guy, put him out of his misery.
Sondra, glad you’re home, happy showering!!
Happy HoHo to me!! I bought myself a roomba type robot. I had one years ago, didn’t like it. Maybe because my Australian Shepherd shedded worse that Pig Pen and clogged it up. It’s just so hard to use broom or swiffer sweeper. The critters saw it, Spookie barked, Kris paced, Pywacket just watched from a safe distance. I think I’m going to like it.
Had MO visit yesterday. All good. Wants PET in February just to make sure. Whatever.
0 -
WHAT??? I’m not doing anything wrong!!!!! Yet.0 -
hi all.
Sorry I'm skipping to the end, (except that picture is too funny!) but I'm too tired to search. I've been on it since April, (reduced twice so on 75 since June). I am definitely slower than BC, but plugging along with work and getting most things done. I often get a little more tired at the end of the cycle, but last month's tired hit mid 3rd week. At my monthly check, onc said I was probably fighting off something. In only in 2nd week this cycle and I am exhausted. I am barely doing basics. Did anybody get hit suddenly very hard with exhaustion?
0 -
Reluctant - I wanted to address your posts. Firstly - I think we can help you deal with the side effects of the drug and answer questions about the drug. Like I said there aren't any support for early stage on Ibrance that I see on the forums so until its created your welcome to inquire about it here - we have a few who are advanced Stage 3 that pop in from time to time on the drug to ask questions etc. I struggle a bit tho how to emotionally support you because Stage 2 - even if fast growing is still vastly different than Stage 4. It just is. I want to help emotionally but I and others would be talking about things from a 4 perspective not a 2 and that doesn't help you presently -could just make you feel worse which I don't want to do - even if some things feel similar its amplified very much with a 4 diagnosis - . I'm not sure if getting your emotional support here would be the best place only because being here might feed your fears of what might happen but may never happen as you watch those of us here who did have it happen talk openly without filter about big things...big realities. I would consider being connected to an early stage group or counselor who can help with the emotional part and inquire here about the side effects of Ibrance. I know of an organization of counselors who themselves had breast or ovarian cancer that help people around the country. https://supportconnection.org/ - ask for Marlene- she's great - shes 20+ years out from early stage breast cancer. The counselors time and support is free. Free to call - Free to email. You've been going through a lot and I'm so sorry, I'm trying to think of how best to support you that will do you the most good and not keep you in a bad place or bring you here when I'm sure truthfully you want to be far far away. I hope this helped a bit. This isn't a shoo away at all - just a forewarning - its raw here and end of life things and living with a terminal illness are discussed here without veil because that's what we are contending with as well as living day to day 'normal' routine life stuff - it could be a bit rocky to read - I know for me it is just because it bowls me over that I'm actually here. Looking forward to helping with the Ibrance - how long do they want you on it, did your MO mention how many cycles?
Spookie - Doesn't that guy sound like a drunken lounge lizard singing in a forgotten airport somewhere about 30 yrs past his prime? lol. My MIL got herself one of those robot floor cleaners- she LOVES it - it does its thing all over her place and then docs itself in its little home when its done - Viola! Her elderly cats don't mind it. She's there sipping her coffee with her feet up watching youtube and her little roomba is hard at work. Enjoy your new extra helper, you deserve it! Those cat eyes seem to say "Wait til your asleep mom, that tree with the far out lights on it is mine! And look you put a pedestal right under it to help me out!"
Dancemom - glad I refreshed! Exhaustion for me seems to be cumulative. Kinda like how chemo was cumulative - worse as things went on. It waxes and wanes but mostly I just feel myself becoming more tired. Basic tasks take a lot of effort and energy. I take a nap mid-day most days - if not 2 naps, a long nap and a short one. On cycle 26 100mg.
Edited to add: Cakes does have a point - things can go fast into 4 - mine did too. Ugh...why must we wrestle with these things and where the hell is the cure...sigh.
0 -
rhosgoble thanks, I was worried I might be getting sick, which terrifies me right now. I just want to get this stupid surgery over with. I can deal with figuring out some nap times. I remember the letrozole making me need naps in the beginning.
Sondra, thanks for all your posts, it's making me less scared. Congrats on your shower.
I know I've read so many other great things, thanks to you all
0 -
dancemom - my fatigue was definitely cumulative. I spent most of my Ibrance cycles on 75 and after a few months I was tired almost every single day - even my week off. Good luck
Spookiesmom - too silly 🎄🐱❤️
0 -
Reluctant, I learned something new today, about ibrance being used for stages other than 4, that's sort of fascinating. While it is considered an "easy" (aka minimal side effects) medication, the side effects are still fairly serious. Particularly the low white blood cell/neutrophils/platelets. Also, the fatigue kicks my butt on some days. I am certainly MUCH more emotional than ever, but like others have said, that could be from my meds (ibrance, letrozole, lupron), and/or from the day to day reality of having a stage 4 diagnosis and trying to wrap my head around the fact that I will never Get Better. I went from stage 2 to stage 4 very quickly, and I continue to have moments where I cannot believe it's already in my spine. WTF?!? The emotional weight of the reality that I'm dying from this disease can wallop me when I think I'm doing okay. I cried less during my chemo (and that was about 100x worse than ibrance), I think because I believed I was going to go into remission afterwards. There is no remission for me now.
So in that sense, I agree with Rabbit that this Stage 4 thread might be frightening for you, people on here tell it like it is, and I know I won't censor myself because this is one of only two places where I can be truthful about the realities of being stage 4. On the other hand, no one told me that I could move so quickly to 4, and perhaps that would've helped me, to hear more about it? I hope you've heard some useful things here.
0 -
Rabbit, my daughter was like me growing up. I added no spices because pepper is too hot, basically hamburgers, spaghetti, chicken. When she met her ex-husband, he cooked and taught her how to cook, and you should see her now. She practically eats anything and is a phenomenal cook. She didn’t know what she was missing. I’m so glad her ex was good for something. Haha.
0
