Ibrance (Palbociclib)
Comments
-
Chicagoan and Divine - Thank you so much for your perspectives! It's good to see how others have tackled these issues and makes me feel less worried and embarrassed by my struggles. It's hard for me to not give 100% but I'm slowly learning that it is okay and MUCH better for my stress levels. It just hurts my controlling side. In reality, my stable of bosses are good with my performance (at least that's what they say) and have championed me taking care of myself. But I do worry that sometimes I am taking advantage of that; I just need to get passed it and take care of me. Divine, thank you for your words of admiration. I felt really embarrassed about it for a while but I totally would not have been effective at work. And I really appreciate seeing what everyone fills their days with. There are some things I'd like to do so hopefully I'll stay engaged and feel fulfilled
As for the military part, I think both of you are right. 18 months is not a long time necessarily (though to us, it could be an eternity!) so I should be able to stay in. And perhaps my military boss will be able to help more towards the end of my service time and give me some more flexibility. I especially want to receive both my VA disability retirement AND my service retirement. To get both I need my 20 years. But I think I will pursue a medical retirement at 20 years which may give me a better portfolio of benefits. Pretty sure I can get that
Again, thank you ladies! I always appreciate your advice, humor, and commiseration. Sending out happy thoughts!
0 -
Snowdrop and Sunshine99 - hope you are both feeling better and got rid of the infections.
Katyblu, thank you for your service to our country! you have earned the retirement and I agree with your plan to work for 18 more months. It's ok to work at 80% now and I am so relieved that your management is supportive.
Chicagoan and Divine, i appreciated reading your perspectives, too. Retirement ....when....how long do I have to live.....all of these are monthly questions on my mind .....I honestly assess this every scan. I don't want to work until I am too sick to work, you know what I mean?
My situation: I have been a real estate agent for 11 years now. I worked hard to establish this career and love it. I am self employed which means no long term or short term disability. I do pay in to social security and also paid in when I was working before I had kids and was a stay at home parent. I can go on social security disability but the $ is significantly less than what I make. If I continue on Ibrance/fulvestrant without progression I will retire by choice in 2024 when I am 60.
When I was dx with stage IV in Nov of 2019, I didn't feel great. I had cancer filled lymph nodes in my neck paralyzing my vocal cord (lost my voice) and cancer filled lymph nodes in my chest putting pressure on my windpipe so I had to sleep upright. These symptoms went away within weeks/months of starting treatment started and I began to feel a lot better ....better energy and started to have a little hope that I could survive MBC for more than 2 years. April, 2020 5 months on I/F my voice came back as the lymph nodes were no longer pressing on the laryngeal nerve. Between cancer and Covid, I had less pressure at work and socially. Covid restrictions were started in March of 2020 in Seattle and the month prior most people were pretty worried about Covid here (large outbreak in Kirkland at a care facility in Feb.2020). This gave me more space to navigate my health without calling attention to it and let me get used to my "new surreal normal".
My husband and I have been able to slow down our lives a bit while continuing to work and look forward to retirement. If I get there. We have the usual worries of medical coverage if he retires early so I doubt that will happen. He is 59 and I am 58. We also have a 23 year old son with "high functioning" autism. Our son is doing well but not done with school. He has a job but isn't making enough to be self supporting so most of my commissions go towards savings and perhaps helping our son by buying him a condo in the future. Our daughter is 25 and doing great but we would love to help her buy a home as well since everything is so expensive. These are the reasons I am still working full time. My husband and I are working with an atty to set up trusts and wills and all of that.
2024 is my goal! However, if I have a progression, I will stop working sooner. I would love to spend time with family while I still feel good. My husband has a flexible job so we could travel if there is decent wifi so he can work for 7 hours and then we can sight see.
Sorry this is so long!
My new oncologist appt went well, she is young but smart from what I can tell:) She said I can start having less frequent scans since I have been stable/NEAD for 2 years. I want to have a scan in December so in 3 months and then starting 2023 we can go to 4 months. Baby steps!
0 -
Katyblu -You have gotten some excellent feedback already. My situation was different then most because I was already fiscally and mentally ready for early retirement at 51 when I was dx early stage. I was actually dx about a week after accepting an offer on our house. I was a detail oriented workaholic (to say the least). I had planned and planned for retirement since in my early 20s. I had plans on taking dancing lessons, bread baking classes etc. I was going to take backpacking trips in the Rockies. I was going to raise chickens and even had a giant vegetable garden planned right down to which vegetables I was going to plant where. I love gardening so I thought that if I got antsy, I could work part time at the local nursery during their busy season. None of that materialized but I did other wonderful things to keep me busy. And I finally allowed myself to relax and just be. Wow, what a gift. I cannot believe what life is like without the stress of my job (granted some of the stress was self inflicted because I was so damn driven). So while my story may or may not resonate with you, I’m here to tell you that it is possible for a neurotic workaholic to be happy in retirement. That being said, if your health allows, hang in there until you make 20. But if things go south, don’t be afraid to pull the trigger. Sometimes just knowing you CAN pull the trigger is enough to help you stay the course and finish out the remaining months until you reach your retirement milestone. Be kind to yourself and don’t feel guilty at work. But do let your superiors know that you appreciate their accommodations. Trust me, my old boss wouldn’t have had ANY compassion. None.
0 -
Hello!
Thank you for allowing me to pop into your group.
Katy I understand what you're saying about things setting you off and throwing off your day. I am driven and a bit of a workaholic and I do experience that from time to time but am learning to roll with it and give myself a break. I'm still responsible for my actions but I don't beat myself up for making mistakes or when things don't go according to plan. I try to move on and do what I need to do for myself.
I'm turning 60 in a few weeks and have outlived my mother by 2 years. She died from Lymphoma 22 years ago and I still miss her every day. So every perfect and imperfect day is a gift for me.
All of your retirement descriptions sound lovely! I "retired" from my first career when we relocated to the west coast and I stayed home to look after the children and ran several at-home businesses over the years. I actually went back to work full time 5 years ago when my husband was considering retiring. We've been married 32 years and it works because we've never been home full time together. COVID hit and he still didn't retire but instead started working from home which he really enjoys so we've had a bit of a role reversal. He does more stuff around the house and that has helped with my stress & pressure.
I love my job working in a private school surrounded by the energy of young people. I do plan to retire at 65 (if I continue to have the energy and can make it) but I have to say I appreciate all the benefits/insurance that I have working full time and my employers are very flexible with me taking time off.
As for my recent diagnosis (single met to the sternum in a previously radiated area) and plans for treatment I'm currently on hold. I spoke to my Med Onc on Wednesday and after some back and forth we've decided to not do anything but re-scan in 3 months - Dec 1. He is going ahead with all the paperwork to get approval for Ibrance but is hesitant to put me on a drug that will affect my whole body when I just have a small single spot (for now). He feels that with my disease history I have time to make a decision and he thinks that radiation is the best treatment for me. Although the radiation onc was focused on telling me the risks (10% risk of a negative outcome) my Med Onc was telling me that 90% of a positive outcome is pretty good. It's all about perspective I guess.
I asked him if I should be throwing everything at this recurrence and he didn't think so. He wants to hold off until I really need Ibrance. I'm good with this for now but I'll have to make a decision after the Dec scan.
Hugs to all and thanks for sharing and caring and all the loving support!
0 -
Well shucks! Came to visit my dad for the weekend. Unpacked my pill container and box of Ibrance. Turns out, I brought the used box and not the new one that starts today. Oh well. Hoping two days off won't kill me. Just kidding. I know it won't, but I still can't believe I did that.
0 -
Sunshine, I’m so sorry that happened. I hope you can still enjoy your visit.
0 -
Thanks, kbl. It will be fine. It's only two days, and I've held off longer than that when my ANC really tanked. I'll be sure to check the package the next time.
0 -
I took my first Ibrance last night. It took us several tries to break into the package. Sheesh! What happens when I don't have enough energy?
0 -
scissors work better than fingers!!
0 -
Funny, are they packaged differently? I open the initial package, then each week is its own booklet and I pop the correct day out through the cardboard. Thank God for the days written there! My schedule is a little unusual, so I keep track by the packaging. I know I have 3 booklets for the month, so i keep them together. The third week I stop at Thursday and then look at the other days i don't use, then I wait a week until the following Monday (10 days later).to restart. Not sure what I should do with the 3 extra pills a month, especially since they are priced at what, $1500 each? ( mine are covered still, so not 100% sure) I figure that at 6 months, I'll have a whole cycle saved and can use those. I hate waste.
Mkirkwood, I have denovo mets to sternum. I'm a tad younger and my team decided to recommend aggressive treatment. I had 7 months ibrance, then traditional rads to ex-boob after mastectomy and then boosts to sternum (34 total) now ibrance again for 6 months. 1.5 years of active treatment in, I am getting the feeling that it's still a (an educated) guessing game and these doctors really do want what's best. My new lowest dose, reduced schedule of ibrance is much more tolerable than last year. I just hope my CT scans from Wed show that its working. (I saw the results already on MyChart and my uneducated eye reads that radiation affected my lungs, but I also read that is pretty common and reversible 🤞)NM Bone scan had to wait, insurance mess. I am rescheduled for 2 weeks from now. (Insurance won't do pet scan) I will go off again for a few months for reconstruction.
The hardest thing for me.with ibrance is having to get EVERYTHING cleared with onc. Teeth cleaning, fillings, eye exam with drops, vaccines, supplements recommended by PCP, holiday fasting, travel for family funeral, EVERYTHING.
Ibrance definitely makes me more tired than I used to be, but so much has happened to my body in the past few years including menopause, covid, covid restrictions, I don’t really know my baseline anymore.
0 -
Dancemom:
Interested to see that you have a 10 day break with Ibrance. I am a little jealous. I am on Kisqali, which has similar packaging to what you describe, but I was told to take the full week's worth of tablets in each "package", then take a week off before starting the next set of three packages. I notice that I feel better during my week off and wish that I could extend it to 10 days.
0 -
I agree that the Ibrance packaging can be a pain. Some days the pills pop out with no problem but other days I feel like I'm breaking my thumb trying to push the stupid pill through the back of the package. Profanity doesn't seem to help, but sometimes I'll take a pair of scissors or a knife and poke through the cardboard on the back of the package. Never a good start to my day!
Funny story - I keep my Ibrance on the kitchen table right under my pill container which holds my Arimidex, magnesium and vitamin D. A couple of weekends ago, we went to visit my dad. I grabbed the Ibrance package and the pill container and put them into my travel bag. Saturday morning, I went to take my pills and realized that I had forgotten that Saturday is the day I start a new package of Ibrance and I was looking at an empty container. And after all the drama to get the home delivery. Oh well, a two-day break isn't the end of the world. I've taken a longer break than that and haven't died yet!
Happy Saturday, everyone.
Carol
0 -
Hi all, happy fall!! Up here in Seattle, we have not had measurable rain since June 15th! It's crazy dry but also a beautiful crisp and sunny autumn so far.
Ibrance packaging - yes it can be challenging to pop the pills out! I find the current packaging a little easier than the packaging when I first started Ibrance but I do resort to a steak knife along the perforated dots that outline the pill, once in a while. It reminds me of the packaging for Barbie's when my daughter was little. No toy was so challenging to open compared to the barbie stuff with plastic coated wires strapping the doll and accessories to the cardboard. Untwisting wires, knives and scissors were needed and I swear some of the clothes were stitched to the cardboard?
The Ibrance packaging seems cruel as many if not all of us have joint pain. Mine started with femara back in 2008.
Sunshine99 -isn't that the way it is? So much work to make sure we get the meds. Hope the visit with your dad was good!
Dancemom - happy to hear your CT scan in MyChart looks good except for the radiation impact which I think will dissipate. Insurance issues are such an unwelcome pain in the butt and just add an extra complication we don't need! Keep us posted on your bone scan and if you have an oncologist appt to review results. I don't clear travel with my MO any more, I just work around my fulvestrant injection/monthly blood work. Of course I wear an N95 at the airport and on the flight and don't eat on the flight. So far so good. I haven't needed a filling (lately) and was told to get the new covid vaccine so I am doing that today.
Hope you are all doing well. I am coming up on my 3 year cancerversary of stage IV. Relieved and happy to say I am doing much better than I thought I would be when I received this dx in 2019.
0 -
Eleonora, my anc even on 75mg was going below 600 by my 4th day off on the full cycle. MO wants to keep me on it, so the reduced schedule, plus 10 days off seems to keep it above 1000 for my monthly blood draw.
0 -
Dancemom
Glad the adjusted dosage timing is working for you. I am only on 400 mg of Kisqali as the initial dosage of 600 mg caused severe GI issues. Still have some problems at 400 mg, but less intense. I have read comments from others here that SEs sometimes lessen or even disappear after several months, so trying to stick it out. My anc was borderline a few weeks ago, and next blood work on 10/18.
Hope Ibrance continues to work for you. Take care.
Eleanora
0 -
Hello everyone! I hope y'all are doing well. We are finally getting some good rain in San Antonio and it has dropped below 90 degrees. Maybe we'll get some fall?
As for Ibrance packaging, I'm in the military system so I am still getting the capsules. Mine come in a bottle so no issues with pushing through the packaging. But it does require vigilance on what day you are on. Sometimes I count pills to make sure I'm on track. But I do have an alarm set for pill taking, so that seems to keep me in line.
I've been doing okay. Some good days and some bad days. Overall I am fine, but I am definitely stressing about work. Every day I have to psyche myself up to go. I don't even work full time, usually 5-6 hours a day. But driving across town and coming into work just makes me tired and stressed. And unfortunately I DO have to make it to 20 years before retiring in order to get all of my benefits. That's only 18 months away, so not the worst but not the best. My bosses on all fronts seem to get it and want me to take care of myself, so I think I will try to give myself more grace and understanding and listen to my body and take time off here and there.
Happy spooky season everyone!
0 -
Katyblu - 18 months is a long time but fortunately you have superiors who are understanding. Take it one day at a time and I bet you’ll be surprised how weeks turn into months. Hugs.
0 -
Hello Ibrance dancers, it has been a while since I posted here, it's very good to see familiar names! I'm starting my 21st cycle of Ibrance tonight, I am both delighted and terrified that it's been that long already... it seems like these months have passed in a bit of a blur.
I'm hoping to work for another 26 months, and then officially retire. That's my hope and plan, but it's up to the scans (good saying for a t-shirt, yes?) Next scans right after the new year.
Wore my "#MBC, #notdeadyet" shirt to work last week and we had a nice recognition of the reality of MBC. Not seeing a lot of pink stuff this October, actually.
Love to you all, we're here! ❤️
0 -
Hi, I start Ibrance and Fulvestrant injections next week. They had me pick up anti-nausea meds ahead of time. Is anyone willing to share what their early days on ibrance and fulvestrant were like? I know we all may have different reactions. I’m trying to go in with a really positive outlook. Thanks
0 -
I'm on week 2 of my first round of Ibrance. So far no side effects at all. I'm also on letrozole.
0 -
Thank you for the response. Those darn TV commercials that go on and on about possible side effects are intimidating. I relapsed after only 1.5 years on an AI so I guess I get fulvestrant instead of letrozole with the ibrance. It’s been quite a learning curve. I am happy you have had no side effects. It provides some hope it won’t be so bad
0 -
believe60, After one month, I was dropped from 125 right down to 75. Neutrophils were the problem, along with extreme fatigue. After that, it wasn't bad, although I had to hold an extra week here and there because of low neutrophils. I'm on fulvestrant now with Xeloda, and I don't feel the fulvestrant is giving me any side effects that I know of. I have fatigue, but I'm thinking that's the Xeloda.
0 -
believe60- I’m no longer on Fulvestrant/Ibrance combo but I was on it for 19 cycles. I never had nausea. I quickly reduced my dose from 125 to 100 to 75 due to low ANC. I had some bone/joint aches for the first couple of months probably related to either the Fulvestrant or the Zometa infusion. Sometimes it’s hard to pinpoint the root cause of our complaint. Good luck.
Sf-cakes - I LOVE your tshirt. I’m also seeing a lot less pink this year but a lot of my pink stuff came from Facebook and this year my news reel is filled with videos and posts of hurricane Ian clean up. I read a post today from someone talking about what it’s like to have your safe zone, your place of comfort, everything you own wiped out by surge that took less then an hour to roll in. She said no one knows what it really feels like until you have to live it and right now she just needs compassion. A little kindness. That really hit home because I know so many of us feel that way about MBC. I’m heartbroken when I see everything they own on the curb (and I mean everything) but I really can’t fathom what they are going through. I guess the key is to be kind, always. Because you never really know what others are going through
I know this thread really isn’t the place for me any longer but it’s the one place where there are some people that know me. I’m having a hard time emotionally. I see my MO later today and based on my PET report that I read, I’m prepared to have a discussion of three clinical trials in my area that I qualify for vs standard of care. I knew my run on Xeloda wasn’t going to last much longer but still…sometimes reality sucks. I know I will get out of this slump, but I really need to snap out of it soon. I already feel like I’ve ruined my husband’s retirement. I don’t want to add salt by being depressed. We are supposed to spend a few in Key West after my MO appointment so I need to put on a happy face for his sake.
0 -
rk, in your post you mention another woman who needs compassion; a little kindness. Please also practice self-compassion and self-kindness towards yourself. It's a learning process. Even living with mbc for over a decade, I am still learning how to practice self care. Be kind to yourself and please don't tell yourself you ruined your husband's retirement. If the roles were reversed and he was dealing with the health issues, would you feel that way about him? That he ruined things for you? Sadly, we as woman too often prioritize the needs of the men in our lives and make ourselves smaller and less important. I am learning to stop this mindset and allow myself the space to be a whole person; allowing my needs to be just as important as my husband's. It almost sounds like a radical idea but it shouldn't! Society has conditioned women to always put others first even to the detriment of our own health. I'm not going to allow the status quo of this kind of thinking guide my life any more. It's challenging for me but I have to show up for myself. If I don't, who will?
Is it possible to go to Key West for yourself? To allow yourself a change of scenery and get what you need out of it and not be guided by making sure it’s your husband who has a good time? What if the comfort and needs for both of you had equal priority?
Please allow yourself to feel all your emotions, the light ones and the dark ones. Sometimes sorting through more difficult emotions, not covering over them, helps me find a way towards lighter thoughts. Sometimes both sides of these emotions coexist within me and I've learned that's okay, too.
0 -
divine - My goodness, your words were just what I needed to hear. I just never looked inside myself enough to realize I’m always putting others first. Always so afraid that I will impose on others. You made me realize that I don’t always take the very advice I give to others. Thank you for help me modify my way of thinking. ❤️
I also saw my MO and she is confident that we can once again get my cancer under control. She is looking into 2 clinical trials and if those don’t pan out, I’ve always got standard of care options…Taxotere, Halaven…until then, Key West here we come!
0 -
Sure the Keys are still there? Hate to be Debbie Downer.
I’ve been off Ibrance/letrozole for several months now. I couldn’t stand the constant nausea. Was living on Ensure and not much else. Lost some weight I could afford to lose. Tried to go on ibrance alone, MO chewed on me for that. Just. Isn’t. Done.
So im not taking anything. Or getting anything in shots. Still have port, still will see MO.
This IS scarey but unless I show symptoms or something lights up on my next scan, I guess im in remission.
0 -
believe60,
Re: Ibrance: I started Ibrance after being on Verzenio for about 27 months. I did not progress on Verzenio, but I switched to Ibrance because of persistent side effects. Ibrance was much easier for me than Verzenio. Most of the side effects that I had on Verzenio resolved on Ibrance. I never had nausea on Ibrance. Ibrance did cause a low neutrophil count as expected, so I had one dose reduction from 125mg to 100mg. At the 100mg dose my ANC stayed just above 1000 after the scheduled one week off. Unfortunately I had subtle signs of progression on Ibrance after 2-3 months and I was eventually taken off. Hope you get a much longer effective response.
Re: Fulvestrant: I started Fulvestrant in Aug and have had 3 doses - Day 1, 15, 30. Now I'm on once a month. I felt like I had been hit by a small truck the next morning after the first two doses i.e. ached all over for a day but felt better by the next day. The third dose after-effects were much less. The first two doses were given over about 2 minutes each side and I did not end up with lumps. The third dose was given over about 1 minute each side and I ended up with a lump on one side - the lump resolved after using a heating pad for two days.
Wendy
0 -
Wendy, thank you so much for sharing your experience on those drugs. Since I start ibrance and fulvestrant the same day, it will be hard to know what effects are from what drug. I don’t expect zero side effects but I am hopeful I can tolerate them and get on with stuff I want to do (mostly spend time with my grown kids and young grandkids). I have my first scan in 3 months to see how these drugs are working for me. Diagnosed metastatic less than a month ago, I feel I have a lot to learn. Thank you and the many others on this forum for the insight and perspective. So appreciated
Nancy
0 -
rk2020- are you her2 low by any chance? (look at your first or subsequent biopsies) Enhertu is an option if you are (based on Destiny04)
0 -
Reminder, if you are interested, we have a virtual (zoom) meetup happening now if you want to meet others who are in similar shoes. Join if you would like here: https://zoom.us/meeting/87236345561?occurrence=166...
0
