Ibrance (Palbociclib)

RK2020

Ciaci Ciaci Caici thank you for posting that. ❤️ I’m in a bit of a funk off and on for a few days now and needed that. I’m preparing for my son’s week long visit with his girlfriend that we are meeting for the first time. I’m always thrilled to spend time with my son and I’m excited to meet his love but I’ve been draggin’ ass for 3 days now and I need to snap out of this. Today was my last day of xeloda so tomorrow I start a 7 day break. Hopefully, the break will help. 🤞🏻

Sunshinedaydream - I’m so glad you contributed. Ibrance was tough on my blood too. In your pocket on 8/2!

Smallmoments - I had bone biopsy material tested in 2020. It didn’t reveal much. No PIK3 mutation. I had a Guardant test done earlier this year when I had significant progression to my bones and it showed up for the first time in my liver. I got zilch out of the test. I hope your results are more enlightening. I was on Ibrance/Fulvestrant for 19 cycles but I had to wring every last bit out of that drug to get that far. My first bone progression was at 11 months and we zapped it with radiation. Then I had some nodes pop up and we decided to wait and see. They were gone by my next scan. Then on the following scan I had multi focal progression in my bones. I was in the midst of a move and was trying to get a second opinion from my MO at Moffitt but change in treatments were delayed first because my records got lost in the mail. When Moffitt finally got my disk, I had a Zoom to go over the results. The day finally came for the Zoom and my MO somehow didn’t order a comparative read. 🤦♀️ Another delay. I got a new oncologist in Florida but all that craziness cost me a month. So theoretically I progressed enough to move treatment in 18 months but I kept taking it for 19 months. Ibrance was my security blanket and I was bummed to start a new med. Because of my move and switch of MOs in Florida, I actually got 3 opinions. We decided to treat the bone progression with rads and then switch to Verzenio/Anastrozole. Verzenio was rough on me so we quickly dosed all the way down and then escalated back to the mid dose. Unfortunately, my next scan showed spectacular progression and for the first time in my liver. On to Xeloda…and my last scan was spectacular. The best scan I’ve had yet. And my blood hasn’t been this good since I started MBC treatment. I guess my point is that it may take a try or two to find YOUR drug. If you don’t have the PIK3 mutation, there are other drugs out there. Good luck.

Aprilgirl - It sounds like you had an eventful Fourth. Both good and bad. When my husband came down with Covid last January, I had been boosted in the previous November. I didn’t ask him to quarantine and I never got sick. I hope the cooties stay away from you as well.

Candy - I’m so happy to hear your anniversary is coming up. I think you too were nervous to switch from Ibrance but things are going well for you now. ❤️

Sending love to anyone I missed! This new format doesn’t allow enough posts on one page and I’ve learned the hard way that if you go to a previous page, you lose all you’ve typed. 😡

RK2020

Spookiesmom- Have you tried Fulvestrant? Given the circumstances, can you get your appointment moved sooner

Chicagoan

Hi everyone. Just checking in. I've been on Ibrance/Letrozole since October 2016 and am still doing well. The leg I broke in March is pretty well healed. I am having a nice summer-going to the beach, riding my bike and travelling. Not quite ready to get back to pickleball but hope to do so soon. Wishing everyone well.

Sunshine99

spookiesmom, that sounds scary! I'm so sorry you've been so sick with this drug. I hope your team can find something that isn't so hard on you!

Carol

Spookiesmom

what is fulvstrant? Not familiar with that one. AI

KBL

Spookiesmom, so sorry you're having a rough time. Fulvestrant or Faslodex is a SERD, selective estrogen receptor degrade. It's a shot in each butt cheek once a month after a few dosing shots. I've been on it for ten months, along with Xeloda. It's working great. Hugs to you

SF-Cakes

I'm sorry to hear of those of us struggling, and any kind of good news is always appreciated by moi.

My next scans are next Tuesday, and for some reason this past cycle of Ibrance I've been hit HARD with fatigue. Which does nothing good for my mood, let me tell you. I'm trying not to read anything into my fatigue, but you all know how this scanxiety messes with our heads and emotional stability.

To add to the hilarity of life, someone reported the yard work that we had done over a year ago to the building inspector. Why?!? He's a very nice guy but there are some things that weren't exactly done to code so of course those things need to be fixed. Nothing dangerous or anything that would endanger any neighbor's yard, so I can't for the life of me figure out what their problem with it is! My yard and my plants and cheerful animal statues have been my little haven, so now that feels kind of threatened. We will fix it, of course, but just one more thing in the midst of cancer, and I feel like I'm barely hanging on.

Love to Aprilgirl, RK, Spookiesmom, Sunshine, Chicago, Ciaci, MaleBreastC, KBL, Candy, and everyone on previous pages (which as we know due to the site "upgrade", if I try to go back I will lose this post) who I didn't write down! Love and hugs, I will perk up soon, going to have some delicious mac and cheese.

SunshineDaydream

@aprilgirl - 'Never tell me the odds" - that's a great quote. When I was first diagnosed, I asked the doctor what my life expectancy was and he said it's different for everyone and wouldn't give me a time frame. Before my diagnosis, when someone said stage IV cancer, 3-6 months is what came to mind. I definitely didn't understand the nuances of the different types of cancers and the different treatments available.

@candy - 4 years is a good run, and congrats on your upcoming 5 year mark! Wishing you, and all of us, many many many more years.

@chicagoan - almost 6 years on Ibrance, and still going, wow! Makes me so hopeful!

@spookiesmom - I'm sorry to hear you are having such a hard time. Were you feeling better while off Ibrance and letrozole? Is there any chance something else is causing the nausea? I hope your team finds a good solution for you soon.

@sf-cakes - in your pocket for your scan on Tuesday. I had a few days of extreme fatigue during my 3 weeks off Ibrance and was surprised by it. I'm not sure if it was the letrozole alone or letrozole and recovery from my wisdom tooth extraction. I always thought it was the Ibrance causing the fatigue. I hope it doesn't mean anything for you but I know it's hard not to wonder. Scanxiety is not fun. The worst part for me is waiting for results to appear on the patient portal. I will check and check and check and tell myself to stop checking and then keep checking. I drive myself nuts.

@rk2020 - thank you for the upcoming pocket duty. I hope you've been able to get out of your funk and are ready to welcome your son and his new girlfriend. I am not sure if they will be staying with you, but if so, I hope they are easy and helpful houseguests. Have fun and enjoy your company

DDIL

Sondraf,

Sorry the Ibrance dance is over but things are getting better for you. I have an Axillary lymph issue to.. did they remove yours? No one wants to do surgery on mine. I am on my 6th month and losing lots of hair hoping it stops!

Since they blasted your met that should kill it correct?

Sunshinedaydream,

I hope your labs will be fine. Ibrance lowered my WBC. I’m on 100 this is my 6th month. Things are shrinking but there’s always a new pain monthly. You’ll have many years left don’t think it it as the 1/2 way point. There’s many women who are long haulers. Hope your new mo is good

DDIL

Chicagoan,

Hi, from your fellow Illinoisan I’m up in Harvard about 50 mi Northwest of Chicago. Since you’ve been on Ibrance awhile.. did you have hair loss? I’m losing lots wondering if it’s going to stop? Happy to hear your leg is good and you’re keeping active enjoying our summers. Good to see the post that you’ve been 5 + doing great! Ins

SunshineDaydream

Thank you Ddil - and yes, I am hoping for years and years and years. My first big big milestone goal is to see both of my girls complete elementary school. So, that’s 6 years away..

Also - re: hair loss. I experienced a lot of hair loss for the first full year. It finally slowed down about a year in and seems fuller. I’ve also let it get longer, so it’s less noticeable. I used to have huge chunks come out when I washed and then brushed my hair. I also stopped washing it as much and keep it tied back while I sleep so there is less maintenance required overall.

Hope that helps!

Tanya_Djamila

Ddil the hair loss was minimal-thinning and then it leveled off. No baldness. The texture changed or it became dry. Tany

Sharware

Hi everybody - it has taken me this long to find you. This site upgrade is the absolute worst in the history of upgrades. I used to be able to find people and topics easily but now it is so frustrating I gave up for a long time. Anybody seen PatGMc? I always loved reading her posts. Anyway I am now recovered from the hypercalcemia event in February (yes, it took that long). My kidney function went down to 5% so I was almost gone. The endocrinologist thinks my kidneys failed from harsh treatment of Ibrance and Faslodex and allowed hypercalcemia to take over and the oncologist says hypercalcemia came first and caused my kidneys to shut down. I’m having a scan of my parathyroid tomorrow to see if it is the culprit. My oncologist says hypercalcemia is common in patients where the breast cancer has metastasized to their bones (like me) but I don’t know anyone else who’s had it. On another topic, how are everyone’s tumor markers doing? Mine have gone up and down over the past two years on Ibrance but the inclination is creeping upwards. I’ll come back and let you know how the nuclear scan comes out on my parathyroid. I have nodules on my thyroid that showed up on the last CT scan so it is worth checkin. Hugs to all on this thread.

Anonymous

SF Cakes, in your pocket for your scans tomorrow! I have been thinking about you and hope you are doing ok. I tend to get serious scananxiety right before scans so if you have that, know we are here for you!.

Ddil - I have super thick hair (normally). I have lost quite a bit but it has started to come back in, probably about 8 months ago. I have had to style my hair a little differently. I am keeping it a bit shorter which seems to make it look fuller and it drys a lot faster! I notice it most in recent photos.

Sharware - It is so good to hear from you. I am sorry about the hypercalcemia. That is awful. I am so thankful that you are recovered. RE tumor markers, so far my tumor markers have never been elevated - even when dx with stage IV. My breast cancer is IDC in case that matters.

Summer is finally here in the PNW which is beautiful. So far, I am covid free - I posted last week about two significant covid exposures. If I am still symptom free tomorrow I will take another test. A doctor told me that if I am symptom free and test negative on day 5 (my work partner tested positive on Thursday so I start counting 5 days from last friday) I am in the clear for this exposure. So far so good! I have been lying low since last Thursday hoping I won't come down with it but also not wanting to spread it around if I do have it.

MaleBreastC

aprilgirl

I have had Covid exposure 4 days back and have mild symptoms like fever and body ache, am waiting for reports but seems like I have Covid

Anyone has been asked to stop Ibrance while having Covid ? Am quite con

LI77

malebreastc, I also had direct covid exposure on the Fourth of July; we went over to a friend's house (they had no symptoms that day), and they all tested positive the next day. I'm on day 7 after exposure and tested negative today with no symptoms, so hopefully I dodged it. I did ask my MO what happens if I test positive, and she said that I could get monoclonal antibodies, and that she would do a cbc, and if my wbc are low, I would get granix. She said that I would not stop Ibrance. Hopefully, this is helpful.

Ddil, aprilgirl, and others re: hair loss. I haven't had any hair loss yet (but it's only been four months on Ibrance for me). I'm hoping it stays that way; I have baby-fine, thin hair so it would be super obvious. When did the hair loss start for you?

I have blood work, a brain MRI, a PET scan, and an appointment with my MO next week. Fun. The scanxiety is real. I don't have any symptoms of brain mets, she just wants to do the MRI because I haven't had one yet, as a precaution. I'm super anxious about it for some reason. Ugh.

Happy Monday, everyone!

Lauren

Anonymous

MaleBc - my covid exposure was direct, too (small office with closed door (think 6 ft by 7 ft) for 5 hours July 5th and 6th with person who tested negative with a sore throat on July 6th but tested positive on july 7th). My oncologist told me to call my GP to get the antiviral if I test positive. She did not mention stopping ibrance but but wbc was pretty good when I went in on 6/27. I feel like since today is day 4 and I feel ok, I don't have covid but have one more day! Will get my second booster if I test negative. SO TIRED OF COVID PANDEMIC WITH CANCER - as we all are, I know that for sure!

li77 - it seems like my hair loss was gradual and I didn't notice it until a year in. In my case it could also be the fulvestrant, I did not experience hair loss on femara when I took it for 7 years. Fulvestrant and Ibrance were started at the same time so it is impossible for me to know which drug is to blame. In your pocket for scans next week! It's good that you will get a baseline MRI, although I understand the added anxiety. I had one when I was dx stage IV as a baseline (which was clear).

Nkb

MaleBC- if you have covid- get the paxlovid right away - it really helps. keep testing it took several days after exposure to go positive for many people I know. you are contagious for 2-3 days before symptoms so it is really easy to get .

good luck-

KBL

li77, I had a brain MRI last year. It wasn’t too bad. They did put something over my head, but it wasn’t bad at all. I had a negative brain MRI. Please come back and let us know how it went. Hugs.

DDIL

Sunshinedaydream- I was told that so much is happening for breast cancer treatment that we have years and years. Like everyone I am praying that is true, with that being said, it seems that you will undoubtly see your kids complete school. This sucks for sure especially when you are so young. There are women as you know that are 19 yrs in, so anything is possible! Thank you for the feedback on the hair. My hair is longer, and I too keep it in a high ponytail when I sleep. But yes every time I wash my hair or brush it handfuls come out, I notice my hairline is very sparse. Hoping it stops. My hair is much drier too. Small price to pay if the meds are working and it extends my life.

Tanya - Thank you. Seems everyone’s experience with Ibrance is so different. But my hair is pretty dry too now- Limit my washing these days. I guess it’s easier to take care off, less grooming! gotta see the bright side. Thank you for your response.

Shareware - My tumor markers went down from 135 to 66. It did go up and down but I think the 4th vaccine I got popped it up to 99 one month. Overall seems to be going down.

Il77- To respond when my hair starting to fall out - about a month ago - I am on my 6th month of Ibrance, Letrozole and Xcheva - my hair started coming out by the handfuls between the end of the 4th month and 5th month. I have/had super thick hair that was naturally wavy - its much thinner and not so wavy anymore and pretty dry. Washing my hair is much easier and it dries much faster. I also - had a brain scan in January it was not bad as KBL stated they put a cage over your head and you need to lay very still that’s the hardest part because suddenly your nose itches or something and you can’t move and all you think about is that - LOL.

Male BC - I hope you do not have COVID! I know there are people who have taken the drug to stop from getting sick and others who have got Evushield. I also heard in the fall a new booster will be out - I think this will be a problem for us for a long time unfortunately.

Spookiesmom

That’s the worst part of any scan for me🤣🤣 something itchey.

Sharware

Hello everybody - Thanks aprilgirl and ddil it was good to see you both and your responses. My parathyroid scans came back normal so that is not the culprit causing my hypercalcemia. I really didn't know what to hope for but m bloodwork came back normal too. I'm going to get another opinion from my old oncologist and see what he thinks about the causality. One of my fears is it will happen again. I'll be having a bone scan next month - I used to get them every 6 months but they changed me to every 3 months since hypercalcemia occurred.

If anyone on this thread happens to ask their oncologist about hypercalcemia and what causes it to happen, I'd be interested in knowing their response. On a different note to all those mentioning hair loss, I started Ibrance in Jan. 2020 and slowly my hair thinned to where I am wearing a wig now when I go out. I think after two and a half years my hair has stopped falling out and possibly has come back a little. Hair loss is listed as a side affect of Ibrance but is disappointing when it actually happens. I find letting my hair grow out enough to pull back in a pony tail helps the hair stay in place and I use a powder that matches my hair color to fill in the baldy spots. And my tumor markers CA27.29 bounced from 54 to 67 for awhile and now up to 77. Maybe next month they will come down a little. Hugs to all!

AnnTop

Hello, everyone. I've been quiet for a while, in part because I tested positive for Covid on June 20 -- I'd had mild symptoms for about 36 hours before testing. It happened the week my MO was retiring, but I got a prescription for paxlovid that day. What a fast-acting drug! He also told me to stop taking Ibrance, but I was entering my off week, so that didn't impact me too much. I either caught a head cold several days later or the Covid "rebounded," but I feel fine and am negative now. My excitement coming up is a PET scan on July 22, the 1 year anniversary of finding out I had MBC after 10 years NED with stage 2 breast cancer.

DDIL, I've had hair loss the past 2-3 months too. I've just completed cycle 10 of Ibrance. I'm wearing my hair short. I've always had thick, fine hair. I don't care at all for now having thin, fine hair. I hope my pixie cut helps disguise it.

My love to you all. Fill the damn glass!

Ann

CATHYWH59

New to this forum. Second round of breast cancer. I now have it on my liver, L2, lung and a spot on my incision from the double mastectomy. My oncologist put me on Ibrance 3 months ago and I got my scans back this week. Significant improvement with some tumors even resolved. I feel very fortunate and I hope things continue to improve.

On another note, I have had some hair shedding with the Ibrance, but found this new product that really seems to be helping. It is a leave in conditioner made from chia seeds. I've been using for about 3 weeks and a vast decrease in hair loss. If anyone is interested, chiacurls.com

Also been tired in the evenings, but haven't really found a solution to that. No doubt my white blood count is down. I've tried moving the time I take my medication, but found that 6pm seems to be the best. At least it is helping me sleep.

CATHYWH59

New to this forum. Second round of breast cancer. I now have it on my liver, L2, lung and a spot on my incision from the double mastectomy. My oncologist put me on Ibrance 3 months ago and I got my scans back this week. Significant improvement with some tumors even resolved. I feel very fortunate and I hope things continue to improve.

On another note, I have had some hair shedding with the Ibrance, but found this new product that really seems to be helping. It is a leave in conditioner made from chia seeds. I've been using for about 3 weeks and a vast decrease in hair loss. If anyone is interested, chiacurls.com

Also been tired in the evenings, but haven't really found a solution to that. No doubt my white blood count is down. I've tried moving the time I take my medication, but found that 6pm seems to be the best. At least it is helping me sleep.

MaleBreastC

As mentioned in my previous post, I was down with Covid and my MO started with an anti viral for 4 days, it’s been 10 days and I am out of Covid now, I did not have to stop Ibrance and am fine, fingers crossed ..

Sunshine99

A question about timing of Ibrance. I've been taking it in the morning from the beginning (May 2020.) I've been having wicked insomnia for the past month and have tried almost everything "natural" I can think of. Magnesium, melatonin, CBD, Tylenol PM, Benadryl and nothing is working. (Not taking them all at once, LOL .)

I'm thinking of switching my Ibrance to evenings. Do any of you think you sleep better when you take it in the evening? It can't hurt to try, I guess.

LI77

Sunshine99, I’ve always taken Ibrance (and Letrozole) at night before bedtime. I also have awful insomnia and nothing seems to help. I have been blaming it on the Letrozole, so I started taking it in the morning, while continuing to take Ibrance at bedtime. So far, no luck, but it’s only been a few days so far

RK2020

cathywh59 - Welcome to this thread. I found Ibrance very fatigueing. For most of my time on Ibrance, I was taking 75 mg. In the beginning I found 75 mg to be so much less fatigueing then 100 but eventually 75 had me on my couch by 5 pm.

Sunshine - I was on Fulvestrant/Ibrance and I switched to nights to help me sleep. It didn’t really help me but it’s worth a try because I’ve heard others say it helped them. And it didn’t change my fatigue either. At one point I tried a pretty strong dose of melatonin and it gave me very little relief. Now that I’m on a different drug combo, I find a small dose of melatonin effective so it was definitely the drug keeping me up. Sleep deprivation sure doesn’t help the fatigue either. I wish I had better advice. Good luck.

Anntop - In your pocket for your scan in 2 days. Please post your results. Hugs.

LI77

Are mouth sores a side effect of Ibrance? I have an awful canker sore under my tongue that’s making it difficult to eat, and the gums in between my top front teeth are super irritated and sore. My anxiety is crazy right now; I had a brain mri yesterday and pet scan tomorrow, so maybe the canker sore is stress related?