Ibrance (Palbociclib)
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Hello,
I am new in the Forum and I created a new topic : How long with Ibrance?
NB : I am not allowed to post the link of the new topic directly in this message.
Because I received few answers and see that this topic is very active, I wonder if you could reply to it. It may help sum-up all the strategies used for keeping Ibrance or after Ibrance
Thanks very much,
Love
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Hi Lili75, I just finished cycle 14 on Ibrance. I dropped to 100 mg from the 125 dose after 4 cycles because my ANC and white blood cells were too low. I know that others have been on this drug much longer than I have, so I'm sure they'll be chiming in soon.
Welcome to this forum - I think you'll find it very helpful.
Stay safe! The flooding in Europe is terrible and so sad.
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hi lili
Welcome to the thread.
I’ve been on ibrance faslodex for 4 years. There are many on here that have been taking it longer.
Drink a lot of water. Take a the same time each day. Each month SE’s can be different.
Conversations usually run on side effects changes in meds etc. feel free to ask about what you’re experiencing.
Take care
Tany
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My doc told me yesterday to come off the Letrozole fora week because of the really bad joint pain. I’m not sure if a week will give me any relief. Anyone else come off Letrozole for a week or more just for a break?
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I’ve been off about 3 months, trying to resolve a different thing. Just started again this week. Been off ibrance too.
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Did you have joint pain as well? If so, has it gotten better? Kind if scary when it’s working and you come off. Mine is only going to be a week at this point. I hope your issue has resolved.
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I’ve had joint pain off and on with all the AIs. Mainly in my feet/ankles. I use a cane, or rollator when it’s really painful. But then it goes away. The current problem is constant nausea. The could be from major stress, Since DH passed stress level is going down. So we’ll see.
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I’m so sorry for what you’re going through and hope the stress continues to go down. Thank you for letting me know about your joint pain.
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Spookiesmom - for nausea, I was able to wear sea bands (for motion sickness but also works for other reasons for nausea). Shortly after putting them on my wrists, I started feeling better. I had those most basic kind that you can probably find in the drug store. I wore them for about a week only taking them off to shower. But I removed them when I noticed my hands starting to swell (I have lymphedema in one arm). I haven't needed to wear them since (fingers crossed).
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Well we got the Prior Auth done with my new insurance, in time for my refill for this month. So I was not out of Ibrance for any time. When the new specialty pharmacy called me (new pharmacy with the new insurance company), then said "Um, you know your co-pay with your insurance plan for this medicine is $6,000." They set me up with a Pfizer co-pay card and this months copay is $0. Thankful for that Pfizer co-pay card.
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Calling all dancers -
I thought this article was interesting. You might too. It’s still not ready to start testing in humans so I’m not sure if any of this will be approved in time to benefit me but it’s exciting steps in the right direction.
https://www.fiercebiotech.com/research/bayer-s-breast-cancer-drug-turns-up-a-tumor-protective-pathway-eradicates-tumors-miceGood night ladies! 😍
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So. I'm tolerating Ibrance 75, finally finished a whole cycle. Scan day today says "Limited osseous metastatic disease has not progressed.". No new mets anywhere else. Stable is good, I'll take it.
RK2020 interesting stuff. Have a nice weekend 😊
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RK-Thanks for posting that article. It sounds really promising and maybe not so far off in the future!
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Sunshine99: thank you for your empathy and warm welcome. I already found much valuable information in this Forum
Tanya_Djamila: thanks for your reply. You've been on it for 4 years, that is more than the average. Did you change your habits since your diagnosis and also tried holistic medicine ?
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I do use acupuncture but I was doing that before Ibrance.
I drink a lot of water and try to eat right but that doesn’t always happen.
there are quite a few on this thread that have been on ibrance for as long and longer than I have.Tany
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RK2020 - great article! Also it sounds like this new drug has been in the works since 2015 so maybe it will be ready sooner than we think. Here's another article on the same topic.
https://www.biospace.com/article/releases/bayer-an...
Wishing us all the best!!
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is external radiation treatments my only option? Don’t like having my stomach radiated also. Isn’t there a treatment that would just directly go into my spine?!
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Annaanna01, I had just one bone met, to my T11 vertebrae. I had no pain, so no radiation was ever suggested. I just started the Ibrance/letrozole, and by the time of my first follow-up scan at six months, it was clear. Are you having a lot of pain? Is that why they want to radiate?
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Anna, a couple of thoughts. I had radiation to my spine, too. Just a few sessions and then a few more to my hip. It GREATLY reduced my pain. They called it "palliative" radiation. Don't let that word scare you. It just means it's designed to help with the pain, not necessarily kill the cancer. It does NOT mean the same thing as hospice!
Second, this is in reference to another post about your Zometa infusion. The first one was the very worst for me, with nausea, fever, and just general YUCK. The second one was a little better and the rest have been basically uneventful. Maybe an occasional slight fever the next day, but that's about it. My infusion, once they start the actual drug, takes about 30 minutes. I'm hoping your future infusions get easier. I just had my 15th infusion. I track my treatments and the SEs just to monitor them.
All the best to you,
Carol
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Kestrel - congrats on 75mg treating you good and Woo hoo on completing a complete cycle and for stable mabel scan results! Is your name after a bird that is known in bird lover's world as a mini hawk by chance? Kestrel's are small birds with big talons so you should never underestimate them.
Here's to many more cycles at 75mg! Doh, I just saw your profile picture, I guess I was right!RK - I need to go back and find that article you posted a little while ago on that drug that was found to not only work but have little if any side effects plus a slew of benefits. Interesting reads. Have you started new stuff yet, how goes it?
Lili- welcome to the dance! We are pretty active here. Hoping Ibrance treats you well for many cycles!
So beloved was looking at Ibrance side effects on his phone while I was getting Zometa a little over week ago and he said gas isn't listed as one of the side effects. I said the fart it's not one of the side effects, it surely is, we have a hole in the ozone layer above our little thread that says it darn tootin' is.
Aprilgirl, Cakes, Ciaci, Pat, Cure-ious, Spookie, Kale, KBL, Sunshine etc, hoping your all doing well.
Jackie and Jaycee, thinking of you both.
Candy, hoping your out of limbo, or close to out of limbo. Thinking of you.
Edited to add: The coconut ice cream with the mounds coconut chocolate bars in it, omg, it was great medicine for the short Zometa yucky feeling after. I'm passing free samples around. Chicagoan somes coming at you!
Its been a tough time on the forums lately, Just wanted to see how fellow dancers are doing/feeling and wondering if your all struggling with some feelings like I am. Wanted to try to lighten things a bit but respectfully....I think I'll go nuts if i cry anymore.
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Rabbit thanks. I’ve been off both for over 3 months. Had about 10 days of absolute misery. Couldn’t eat, constipation, nausea zero interest in food. Lost 10# in 6 weeks. Compazine became my friend. Slowly feeling better. Am eating better, not great, a little better. Still not interested in food. Started letrozole last week, so far, ok. Will see MO next week, find out about ibrance.
I’m starting to think it’s nervous stress. Which seems to be settling down. The roof will be replaced Friday, DH funeral was last week. I didn’t do the 1000 mile drive one way for that. More unnecessary stress there.
Just trying to keep me and the critters reasonably cool.
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Spookie, my goodness you sure have been through a lot. I think your right, it does sound like nervous stress, you've had major life things just happen your adjusting to and on top of that your trying to manage cancer too. I'm glad your slowly starting to feel better. Let us know how MO appt goes next week. Maybe the break might be a good thing, i think i remember Cure-ious mention "resetting" once, like taking a break for a bit and restarting to re sensitize? Something like that. Hoping the restart of everything goes smoothly and I truly hope good things are headed your way, cool sunshine to chase away dark clouds. I'm still so sorry about your loss of DH. Is your new houseguest letting you sleep? I remember you posting an adorable little terrier face recently
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He’s pretty good at night with the kitty crazies. He does settle when the dogs and I go to bed, but then decides to check out the yard, in the verticals. Bang bang. He does make me laugh and we all need that.
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Hi, Rabbit. Thank you for the mention. All is stable here. Hit two years of Ibrance last month. I hope you’re doing well.
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Hi All - RRabbit, thanks for the shout out
I just had my 22nd faslodex injection and just starting my 20th or 21st month of Ibrance tonight.Spookiesmom, I am so sorry you have had 10 days of misery. I am happy you have the new puppy and the cats to keep you entertained. Like Rabbit said, I hope the rest from treatment helps and your MO appt next week goes well.
RK2020 and GoKale, thanks for posting those articles. It is helpful to see that things are in the works that look promising for us!
I was ok'd to start my Ibrance, although my anc was .87 today.
Candy- I feel like you have an appt this week to review the next steps - keep us posted, hope you are doing ok.
KBL - two years on Ibrance, good for you!
Trying to catch up as I have been busy at work - hope I haven't forgotten anyone who has upcoming scans and I send you all good energy and prayers!!!!
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Hello to all the dancers, and Rabbit, I can relate to struggling with some painful feelings lately. It comes and goes, I try to let it wash over me like a wave but occasionally feels like it could drown me. Joined a "live" (virtual) MBC group recently and I think that will help, ultimately. I think I might need to get back into individual therapy, although then I feel guilty about the cost...ugh.
Gas isn't listed as a side effect of ibrance? Huh. Tooted in my yard the other day, and my neighbor, in his yard, looked around to see where the foghorn was coming from. I crouched down and hid behind my fence. I used to have discrete ladylike toots, pre-ibrance - now my rear end has the personality of one of those WWE wrestlers.
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Thank you, Aprilgirl1. I hope it continues to do its thing.
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SF, I was reading your post and just about choked on my coffee! Foghorn, indeed! I had this hilarious vision of you hiding behind your fence...
Thanks for the morning laugh!
Carol
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SFCakes - that made me laugh, too! Oh boy - I have not had that as a side effect from Ibrance, yet.....
MKestrel - I read back a bit in an effort to catch up, congrats on the stable Mabel scan! Great news.
SFCakes - I, too struggle with "feelings". It comes and goes, like waves I suppose. I had my monthly oncologist appt yesterday, pretty "normal" as no scans are involved - really its just blood test, meet with medical person, wait for fulvestrant shot, rush home to work. I go to a large cancer center (NCI rated which can also mean a bit impersonal) and see either my Oncologist or her Onc. PA monthly. Onc PA is on maternity leave (I adore her!). I saw her replacement. My anc is .87. We all know how our white blood count fluctuates and this is my 19th or 20th month of Ibrance,now on 75mg due to low anc on higher doses. My onc has allowed me to start the next cycle without a break if I am above .85, so I think we have this agreement and it should be in my chart. The PA tells me I should switch to Verzenio. I nicely ask the PA if Verzenio has better Progression Free Survival stats? It doesn't. I had this conversation with my MO a few times over 19 months, discussed the pros/cons. V has diarrhea as a common side effect, and I can't risk that with my work. I don't work in an office, or at home, I am showing people homes. After I explained this (nicely) she told me I would need to take a week off and retest my blood in a week. I asked her (nicely) again to check with my oncologist and send me a message via MyChart. Shortly after, I received a message that my onc had given the ok to start Ibrance with my blood work and she would update my chart that i am ok to start Ibrance if my anc is above .80 (assuming I feel fine). For some reason, this exchange, which was not heated or negative really got to me. I had 1.5 hours to wait for my injection, so I bought a very cold diet coke (haven't had a soda in years) and a bag of chips, went to the very large and dark parking garage and sat in my car and cried tears of frustration. I have no problem advocating for myself but it is exhausting. I am tired of having this in the back of my mind, always. Mostly, I am thankful that I feel good, but we all have worries and it's a lot to carry. Sorry for the long post, I feel better knowing that all of you understand these waves of emotions. SFCakes, you are not alone.
Started Ibrance last night. Head held high, shoulders straight - onward!
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Aprilgirl, I agree the PAs tend to go above their job description. Ran into this with PCPs. Had visit with her. I don’t like her on a good day. Was telling her what was going on. She took it upon herself to drop dosage of my cardiac med, without consultation with PCP or my cardiologist. Who I will see next month, and tell him what she did. I won’t change the dose unless he says ok.
Not the first time she’s done this. Has tried to over ride MO. Grumble grumble.
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