Ibrance (Palbociclib)
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GoldensRBest - I just can’t believe that we not only have to deal with MBC but Covid too. What a double whammy. Hopefully now that you’ve endured Covid, you are well protected. Hugs.
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Covid booster: I sent a message via MyChart to my oncologist's team - they said in this case, my status as stage IV and on Ibrance does qualify. This is different than a year ago and early vaccine recipients had to be in the category of immunocompromised, Ibrance users were not in that category. I have my monthly blood test/fulvestrant injection on Monday and if my blood work is ok I will most likely get the booster. My cancer center doesn't have them but I can go to my local pharmacy - will show the email confirmation or my new box of Ibrance for "proof".
I still work full time (my choice, I love my job and it keeps me from constantly thinking about CANCER) and I work with a variety of people out and about so I can't socially isolate or work from home.
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Oof, my next scans are already coming up - how did nearly three months go by so quickly?! That feels a wee bit scary, time flying by. My MO likes things to be scheduled right on time, scans are exactly 12 weeks apart.
My medical center is holding off on the vaccine booster/third shots for patients, said they will let patients know when that might be offered. I'm still working from home so I feel less concerned than if I were back in the office. But have tickets to see a great play in January (which has been rescheduled three times now), and am so hoping that my good friend and I can go!
Thinking of everyone on this ibrance dance thread, truly thankful for your insights and experience, and the laugh-out-louds. Going to get this scraggly mop of greyish goofy hair trimmed up today, then pick up my new glasses (leopard print cat eye frames). Have to look decent, at least from the waist up, for those virtual meetings!
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SF Cakes - I bet I’d love your new glasses. When I worked, I went through a phase where I spent too much money on eyeglasses as a fashion accessory. 🤓
I’ve got an appointment with a new oncologist next week. 🤞🏻She can’t be any worse then my MO in Tampa and she’s about 170 miles closer. 👍🙏🏻🤞🏻
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Well, ladies, after 44 cycles of the Ibrance Dance I am saying sayonara and on to the Lynparza Lindy (as PatgMc would say).
My MO wants me to have local therapy with Y90 to the liver mets, but I cannot do that right now. If you follow me on Mel's Living Room Thread or the Liver Met Thread you will know the story. So.... we are changing me to Lynparza. Maybe Y90 later when my life situations get better.
So anyone out there --- PatgMc -- that has any advise??? I need to look and see if there is a Lynparza Thread.
I will still come here and post, if you will have me.
It was a good run on Ibrance. Thank you Ibrance for the 4 years you gave me.
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Candy, you might just return to this dance before you know it! I made the decision to try Lynparza when it was first approved for MBC. Looking back I realize the bad side effects I had were from Covid-19 in the days before much was known and there was no test. I remember most when I lost my senses of taste and smell which we now know are classic Covid symptoms. I went back to Ibrance after three months barely giving Lynparza a chance.
So here are our good wishes and many prayers that Lynparza works well for you with few side effects, Candy, knowing that you can return to Ibrance. Either way you're still part of this dance and we aren't letting you go! (You might search up an Ovarian Cancer website for side effects as there are people who have been on Lynparza for years out there.)
Love from PatGMc
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candy - you definitely have to check in with us periodically! Wishing you tremendous success with your new friend LL. 😘
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Candy here are best wishes on your way: less se more success (((hug)))
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Candy, here's hoping you can do the Lynparza Lindy for a long time! Sending you love, you are dealing with a heavy emotional load right now. ❤
Also, this reminds of me of something Rabbit suggested, a Stage IV thread for just checking in, not specific to any treatment, so those who want to stay in touch can post there, no matter what dance they're doing.
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Candy, sorry you're leaving Ibrance. I just got home today from being in the hospital for last 8 days. I'm just too tired to go into detail tonight. I'm trying to get caught up on on a few threads; will post next week.
Very interesting discussion about MOs and booster shots!
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From one great drug to another, Candy, best of luck!!! Of course keep a SERD-CDK4,6 on the list for later, esp as a long-time responder to I-F. And please comment on the experience of a PARPi, for those who go on it in the future
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Good luck on Lynparza, candy! Hope you get at least four years on that, with no side effects to speak of.
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Candy, I’m glad you have a plan that you’re comfortable with. What form is Lynparza—pill, infusion? I hope it’s relatively easy on you but that it does it’s job. We can hope for both, right??
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Candy, good luck on Lynparza. I hope you get many years from that drug.
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Candy, I'm glad you have a plan that you're comfortable with. What form is Lynparza—pill, infusion? I hope it's relatively easy on you but that it does it's job. We can hope for both, right??
Lee, Sorry to hear about 8 days in the hospital! I'll be checking for your more info post. I’m sure you’re glad to be home
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Rosie24, Lynparza involves a bottle of pricey pills, something we all know well!
Lee64, I know your own bed must feel mighty good. I'm wishing you well!
Love from PatGMc
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Wishing you the best Candy0
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Hi All, I finally got rested up from my hospital stay and am trying to get caught up with all that's been happening with you ladies. I finally saw a Dr. in the hospital who wanted to dig a little deeper, do a few more blood tests, etc. The week-end Dr. was ready to send me home on Mon. when nothing had been resolved except things had stabilized a bit. The new Dr. said he could send me home but I would probably be back in a couple weeks and he was not satisfied with that. He found that I had walking pneumonia and also some indication on a blood test or culture suspicious for sepsis. He gave me IV antibiotics and by adjusting fluid intake and other things, I started feeling better right away. They also drained a lot of fluid from my pleural effusion, don't have those results back yet. I am back on Ibrance. My schedule is totally screwed up; no Fasoldex last month and nothing scheduled for this month yet. I go for a CT scan next Monday but no labs scheduled either. I feel like I fell between the cracks somewhere along the way and I really resent it. If anyone has any thoughts about this episode, please comment.
I really feel alone in this. To top it off, my front tooth developed a chip in the hospital and has broken off even more this weekend. Call to the dentist first thing in the morning. Friday the 13th really jinxed me this time!
Thank you all for being here for me.
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Lee64 - I'm glad a doctor caught your pneumonia, but you've been through an ordeal. Can you contact your MO's office to ask if you need to schedule labs?
I had to stop Ibrance for 3 months due to a severe rash after getting the first shot of a vaccine. Ibrance did not play well with Moderna for me. I was able to get the second dose without incident. Fortunately my TMs have remained stable. I'll start Ibrance cycle #18 at 125 mg tonight.
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Hi all, I’m Stephanie and I’m new to this board. Im stage IV with extensive bone Mets and I’m on letrozole and Ibrance and have been on the Ibrance for two cycles and now im Having issues with it and wondering if anyone else has experienced the same thing and how you handled it. What I noticed almost right away is that the frequency and intensity of my bone pain both doubled almost right away. The package insert said to call the doc if symptoms increase or even stay the same and yes they have so I called. Doc didn’t seem concerned but right then i was forced to change MOs due to insurance issues and so I called the new doc and he said the same thing. Thanks to a temporary lapse in insurance, i can’t get a pet scan until 9/1 and I’m kind of freaking out right now. This just doesn’t feel right and I fear it’s making it worse. Does it do that with some people? I often don’t react to pharmaceuticals in the expected way so it wouldn’t surprise me.
Part of it might be due to the fact that I’m suffering an extreme amount of stress due to the insurance issues, or maybe that’s all of it, but the extra pain started before I knew what was going on with that. An example is that before I started the Ibrance I’d have a pain day about 1x every week or two and I’d say on a scale of 1-10 it would be about a two or three but now it’s up to 2-3 days a week and has hit what I’d judge to be a six or seven. The next day after a pain day I’m so fatigued I sometimes just stay in bed and I feel like my cancer is progressing. The good news is no gastro issues.
Any insights would be appreciated.
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Hi Pipers, When I started on I-F I had new shooting pains in the largest of the tumors (shoulder and hip), tho very noticeable they ended up being "flares" caused by the die-off of cancer cells- these went away after awhile, I don't remember how long it lasted.. This may be completely unrelated, but its not necessarily bad news to have pain when starting on a new treatment
If you were off of AIs when the mets were discovered, its unlikely that the cancer would be endocrine resistant at this point
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Hi all,
Candy, all my best wishes for you and Lymparza - hope it treats you well and kicks the cancer to the curb. I will look for you on your other thread!
Lee64 - I am so sorry to hear about your hospitalization, pneumonia and everything that you went through. I don't blame you for feeling like you fell through the cracks. I sure would want my faslodex asap - can you have that on Monday when you go in for scans? In your pocket for your scans and I hope you feel better every day. We are here for you!
SFCakes - in your pocket for your upcoming scan, is it this week?
SerenityStat- sorry about your severe rash from the vaccine, what a relief that your TM's are stable after taking the break.
Pipers - welcome to Ibrance. I am sorry you have these pains, I don't have bone mets so don't have an answer but Cure-ious' has some good info for you. Hope you start to feel less pain soon.
I started cycle 21or 22 today. My blood work was good (neutrophils at 1.09), faslodex injection was fine and onc meeting was fine. She does want me to have the covid booster soon (my husband and I are going on a vacation/ 5 hour flight on Sept 3rd) and she would like me to have the booster before I leave. Onward!
Hope everyone is doing ok, if anyone has upcoming scans and would like pocket duty, write a quick post:)
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Lee64 - I’m so sorry to hear of all you’ve been through but rest assured. You are not alone. Check your pocket. I bet you’ll find us there. 😘
Pipers - Welcome. I’m on Fulvestrant, not Letrozole but I also experienced increased bone/joint pain when I started. I don’t remember how long it lasted but it was at least 3 months. My first repeat PET showed decreased activity. I hope yours does too. I hope you have found an oncologist that’s a good fit for you and your insurance. Good luck.0 -
Hello everyone! Some may remember me from several years ago now. I'm still 'here' in the existential sense (LOL). By way of new introduction I had bc the first time 21 years ago at age 33. Then dx with mets 12.5 years later. That was 9 years ago now. I just turned 55.
Life had gotten super busy for me when I had taken a break from posting here. I got divorced (after finding out 3 yrs. after my mets dx that my ex had been cheating at least half of our 20 year marriage!!), started dating again, and then got married 4 years ago to a wonderful man.
I still work full time (and always have) at a very demanding corporate job which combines product and technology. The kind where you're on 12 zoom calls a day, every day, and then have other deliverables besides. I've been battling massive fatigue since being redx'd. I was on Xeloda for a couple of years since 2012, and was on Arimidex, which I couldn't tolerate pain-wise - then switched to letrozole (only) - which worked beautifully on its own from 2013 until now.
So - the "until now" part. Just had first CT scan since 2014 to show progression in the lungs and bones. I have a new onc - thank God - the other one wasn't in the least bit proactive. She's going to start me on Ibrance, Zometa and Fosladex in 2 weeks.
I am afraid of so many things now...I'm nervous as can be, as I don't want to lose any hair or have thinning. I'm super scared of the extra fatigue (as I find it really hard to manage NOW), and also super scared of any potential lung inflammation from it. Mostly, I'm scared of losing my ability to work/keep up at work, as I carry the benefits and make a lot more $ than hubs and am lucky to work for a huge company with good benefits. My husband's benefits (should we ever have to switch to them) are like having no insurance at all.
I'm going to be reading up on the other threads about how to possibly phase into disability, etc. That scares the hell out of me too - but I'm so tired of working and living with the work stress. I just don't want to lose everything we have built together. I'm sure you all know the drill.
I have read some very positive experiences on this Ibrance topic here, and that has been encouraging. I keep telling myself that I need to just go with the flow and see how my body reacts before I get all nuts about it - but I think underneath it all there is that old dread and abject terror of my terminal status roaring back to the surface saying, "Hey - This is real and it's coming for you."
It's been hard enough to hold myself together mentally and physically to this point, and I just feel so scared, lost and alone. My husband is awesome. But there is something so uniquely isolating about living this experience in your own mind and body, you know? No one 'normal' can really understand.
Anyway - just wanted to say hello again and share where I'm at.
Lots of love to all -
Liz Lemon
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Liz - Sorry that you find yourself here again. Sending you lots of positive thoughts.
I'm on a similar mix (Ibrance/Xgeva/Faslodex) plus Lupron. I don't technically work full time, but I work in tech and have multiple business things going on plus a 5 year old (so all that seems like a full time job). I find that when I get a good night's sleep, I'm fine. I might have a little more fatigue than in the past, but I have found it manageable, and I rest when I can. Often, I have more energy than my husband.
I wish you the best with your new treatment plan.
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HI Liz, welcome to the Ibrance group, sorry you are here but I have to say that I get a lot of hope from people like you who have mets for over 5 years and are doing ok. I am 57 and work full time. I am not on zoom calls (ok, sometimes on zoom!) and am mostly in my car, on my computer and with people (I sell real estate). I was dx in Nov. of 2019 with stage IV and had a lot of trepidation about my career, if I could work the hours I need to on Ibrance/faslodex along with the fear of it not working, will I survive,etc. Ibrance/Faslodex has worked well for me in that I have NEAD on scans since 6 months on this combo. Overall, I feel pretty good. I have had some hair thinning but it started coming back and overall it's not that noticeable. My main side effects are in my White Blood Counts or neutrophils which led to two dose reductions in the 22 months I have been on Ibrance. I am on 75mg and my blood work has been fairly good with no need for an extra week off of Ibrance. 2020 I had my best real estate sales to date and 2021 has been really good, too. Very few if any work colleagues know that I have cancer. My husband carries our benefits so I don't have to worry about that but I do understand how stressful that would be. I am just trying to make "HAY while the sun shines" as I worked hard to establish my career and enjoy my work a lot. I do have the emotional roller coaster moments every month as I restart Ibrance, hoping I am a super responder and can be on this drug for many years without progression.
I wish you the best with this new treatment, we are a supportive group!
edited to add: Has your oncologist ordered a biopsy on the new met? When I was dx with stage IV my oncologist did have my biopsy checked for PIK3CA as it would indicate that Ibrance/faslodex might not work for long or something like that? At that time, I did not have that mutation. If/when I have a progression she will try to get a new biopsy - I realize not all mets can get a good biopsy sample but it's something to think about.
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Jsniffs,
Thank you! It's so nice to meet you and hear that your experience with the meds are doable! A little one IS a full time job, never mind anything else. You have two jobs!!!!
LL
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Aprilgirl 1 -
Wow!!! NAED? That's so wonderful!!! And you have a very active life. I'm so relieved to hear this is possible. I worked the entire time I had chemo the first time at 33 yrs. old - I am just so scared now at 55. This helps a lot...thank you for sharing this!
My WBC's are usually 3.something. When they get low - do they give Nupogen (or something similar) to stimulate the wbc formation in the bones? Or just make you wait an extra week til they come up?
Other than a couple of dear friends that I have known and worked with for years, no one else at work knows either, and I'd like to keep it that way.
Thanks!
LL
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@ Liz - my onc does'nt use Neuopgen, she makes me take an additional week off as she said Ibrance suspends WBC doesn't kill them off so it's different than with Chemo in that sense. I edited my first comment to add a question about biopsying your progression, if possible.
When I was lowered to 100mg I still had too many months needing an additional week off for low neutrophils. I was lowered to 75 mg and my blood work has been better. Each time my dose was lowered, my onc mentioned switching me to Verzenio which is another drug like Ibrance (CDK 4/6) BUT the main side effect is gastrointestinal and severe diarrhea. I can't function in my job with gastrointestinal issues. As my quality of life is really good on Ibrance/Faslodex I hope to stay on it for many years (fingers and toes crossed).
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oh I’m so glad I posted my question...that eased my mind considerably folks. I’m ready to stay the course now because I can still handle the pain but I didn’t want to take a drug that isn’t helping, or worse making it grow.
Liz, you also inspired me...I hate the hair loss but I’m retired and I just want enough energy to dig around in my garden.
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