Ibrance (Palbociclib)
Comments
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Gigil-I echo Chico's response. I had a sore scalp and quite a bit of hair thinning the first three months or so when I started Ibrance. Then it just seemed to stop as my body got used to the drug.
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gigil,
I had a sore scalp especially at the crown when on Verzenio. The sore scalp went along with hair thinning. My scalp was red and itched terribly, even burned sometimes. The symptoms drove me nuts, especially during the night, so I saw a dermatologist. He prescribed Mometasone Furoate Topical solution 0.1%. I used it maybe 2-3x week at bedtime. A few drops squeezed onto the affected area and rubbed in. It helped calm down what I assumed was inflammation. With time the problem gradually resolved and I stopped needing the Mometasone. When I switched to Ibrance, the problem did NOT return and I did not have more hair thinning either.
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I am currently taking my third cycle of ibrance. For the first 2 cycles, I felt absolutely normal. This time around though, it’s kicking me in the butt. Fatigue, low energy, low appetite,general ick feeling. Is this common? This third round is a big deal for me cause at the end of this they will scan and see if I can stay on it. I had some hip progression during first cycle (hip pain led us to it). I do hope I can get some more time out of ibrance.
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It sounds like scalp soreness is fairly common and hopefully not a lasting symptom. I am on Faslodex and a Ibrance and the aching hip and flank have been pretty pronounced. It seems to be getting better with exercise and stretching. Exercise is just being physically busy in the house - not sitting in one place too long. I still have boxes to unpack and my craft studio to set up.
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Another question. I have had very occasional ocular migraines most of my adult life. They are suddenly becoming more frequent. Has anyone experienced this while taking Ibrance? I am really trying to stay calm with these darned side effects.
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Gigil, I have had ocular migraines since I was a teenager. They seemed to lessen in frequency and severity with menopause. I don’t know that they are more frequent, but I do still get them on the ibrance. (I started ibrance and faslodex 10/25/2022). But now that I have Mets,the vision disturbances can spook me!
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Believe 60, they spook me also! I have always hated those things. I did a deepdive on the discussion threads however, and they seem to be quite prevalent with medications that downgrade estrogen. They are definitely disconcerting though. I never seem to be able to take them in stride.
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I've had migraines since my 30's, although very few since I was diagnosed metastatic. I thought perhaps my brain was trying to give me a break? I did have some other eye symptoms that I started feeling worried about, went to the ophthalmologist who took images of my optic nerve, did a glaucoma test, and the end result was - I have dry eyes and can benefit from frequent use of eye drops. Whew. I just assumed cancer, don't we all.
My next CT and bone scans are next Tuesday, so happy new year (lol, eye-roll). I posted in another thread about my husband's recent death, and the only good thing about his passing is that I feel much more accepting about my own illness, and I won't be sad to join him, whenever that happens. Would love to be able to travel and visit friends in the new year, will find out next week if I can start making plans for that.
May we all get some respite from anxiety, side effects, etc in 2023.
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Re: ocular migraines, I get those too, along with dry eye and twitchy eyelid on one side. Then I read how that can be a menopause / low hormone thing (which also changes eyesight) and it made sense. Now Ive got some high-level eye drops that put a lot of moisture in and take more frequent breaks when using a computer and those issues have cleared up a lot. Sometimes, though, ocular migraine is just gonna happen, usually with a change in weather or a lot of stress for me, and its a dark room, ice pack if I need it, maybe some caffeine along with the painkillers.
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Happy New Year to everyone! Yes, let’s hope we can all carry on with our hopes and dreams in the coming year. sondraf it sounds like you have had quite a year! I hope you can travel and do those things you want this year. My one fear is leaving my husband behind some day. I think that will be so difficult for him. I don’t want to leave so much pain in my wake. Good Lord willing we can all continue to live fruitful, satisfying lives for years to come and they hurry with that mRNA technology, which just might be the answer for all of us. I believe they are getting close. My brother lives in Europe and he is keeping an eye on things for me there. Meanwhile, my goal is just to keep plugging on ahead with the most positive attitude I can muster on any given day, and rest when I need to. I am so grateful to have all of you out there and for the help I have been given to cope with all of this. Happy 2023! Another year of victory
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Couldn't log in for a while. There was some question a bit ago about SE and lower dosage. I started on 125, and it was awful. I was so shaky and weak and exhausted. I did get some mild mouth sores during theb3rd week.. My ANC after the week off was 600, so I took an extra week off and lowered to 100. Same situation so lowered to 75. The tiredness is cumulative for me. I had to take naps by week 3, and ANC would dip to 1000 or even 900. I was on that for 5 months, each month a little more tired. Then I took a break for mastectomy, recovery, 7 weeks of radiation more recovery. I restarted 75 in summer, but ANC tanked again. So my schedule changed to 15 days on, 10 days off. Stopped again in Nov for DIEP surgery, but i see MO next week. I know I have one more surgery to go, and then I hope we can just figure out a good Ibrance schedule that I can learn to deal with.
I started letrozole a month before Ibrance. MO wanted to check for SEs seperately. Been on letrozole the whole time except 2 weeks before the recent surgery. It gives me muscle cramping and maybe mild joint pain, or maybe in getting old. It DRIES me out. I use tubs of aquafor and have to have reminders to wash my hair, because there isn't the same stringy visual cue I am used to. Can't do it too often or my scalp peels. Baby shampoo, then a dab of Moroccan oil has been good. I had some mild thinning in the beginning, but its ok now.
I did have a couple of (undiagnosed) migranes since this all started. I think they must be due to the hormone therapy. I only had a couple of "eye headaches" in my life before, starting shortly before menopause.
Nothing major. The fatigue is the hardest one for me.
Interesting, last visit, my MO had a bunch of little boys, er I mean young male doctors trailing her. It was weird cuz normally she talks to me, but this time everything was addressed to them. One asked about another medication- didn't catch the name. She said something along the lines of had i presented now, she would probably go with that other line of treatment, but as there hadn't been progression with the Ibrance, she will keep me on it.
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Cross-posting from another thread: My latest scans are clear of any progression, but show a mild compression fracture on my T9 vertebrae (original site of metastasis). My MO had not started me on a bone strengthener earlier but is now recommending it. I asked about the difference between Zometa, Xgeva, and Prolia, and she favors Zometa, said there's less of potential negative impact on kidneys and teeth. Curious if anyone has any thoughts about the different options.
Looks like I'll be starting cycle 24 of Ibrance next week, grateful for this medication right now!
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sf-cakes - I’ve been on Zometa every 3 months since March 2020. I’m attaching my two favorite bone sessions from previous LBBC conferences. The doctor in one talks very fast and gets pretty technical in the beginning but he’s very informative. The female doctor talks too slow for me so I speed up the play in YouTube. Lol. But she has some good points regarding these bone strengtheners
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Thank you RK, I just watched the speedy talking male doctor, and will watch the next one later! Hope you are doing okay these days ❤️
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Our health insurance changed as of 1/1/23, so I'm hoping the Ibrance will still be covered. It looks like it will. I called yesterday to make sure I'm in their system. I hate changing insurance companies, but the bank who employs my DH was acquired by another bank, so everything is changing. I don't like change. Sigh...
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Question for the group— Has anyone quit taking Ibrance since the Paloma Trial results came out last summer? My Onc said it showed no progression free or overall survival value in the trial over Letrozole alone. Hate to take drugs I don’t need, but after seven years on it, does it make sense to stop?
What are you all hearing? Thanks
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Hi iwrite-Good to see you. I wasn't aware of that study result. I sometimes wonder if I still need Ibrance or if I would be ok on Letrozole alone. I worry about the long-term effects of both drugs on my body but then I think how lucky I am to be even thinking long-term. I don't think I'll make a change. My quality of life is good. But this is food for thought-I wonder if someone could take an Ibrance break for a long period and then go back if there was progression?
The initial trial definitely showed I/L had a longer progression free survival than L alone. I have to look up the latest. Thanks and belated congrats on your recent book.
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I feel like Tina2 took an 18 month break a few years ago maybe? Im not sure if it was necessarily from Ibrance, but it was definitely a first line or two.
You would think now would be the time to deploy those ctDNA tests, or if they have been used with some of these trials to determine if some treatments can be stopped. You would think in certain patient subsets there is a tipping point where disease level is so low and managed that the patient is effectively overtreated by continued use of the hard core drugs. But who wants to be the one to tempt fate, you know?
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sf-cakes, congratulations on clear scans. You've been on my mind and in my heart since your husband passed away. Great to hear you are doing well on Ibrance and passing the 2 year mark with clear scans.
Iwrite, When the last paloma study results came out I discussed it with my MO. She had lots to say. She is a believer in Ibrance and like Chicagoan mentioned, the PFS was significant compared to letrozole alone. It's true the OS was not significant . I am hoping Cure-ious will give us her opinion on this. My mo also said since I am NEAD she would not switch me to kisquali and had a lot to say about the difference in the patients in the study and it's challenging to analyze studies in an "apples to apples " comparison.
As SondraF said, who wants to tempt fate? I have wondered the same thing (if it's fulvestrant that really has me NEAD or both drugs) but I'm not about to drop Ibrance. I really appreciate hearing from those of you doing well 5 plus years on Ibrance. It gives all of us so much hope.
I've been visiting my parents this weekend for my mom's 86th birthday . We are in the Palm Springs area and it's a nice break from our Seattle weather. Thinking of all of you and in your pockets for any medical appts or upcoming scans.
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aprilgirl, are you near La Quinta? I often say "the Palm Springs area" since many people don't know where La Quinta is.
Carol
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I’m sort of up a creek, and don’t know what to do. I had constant low grade nausea, suspected it was the letrozole and stopped it without MO aproval. He said ibrance wouldn’t work without it. So stopped ibrance, started back with letrozole, nausea came back. I’ve stopped both, after loosing another 5#.
Have yearly scan coming in February. Assume I’m NED. He wants me to do falosdex injections with ibrance. I’m afraid of potential nausea again from the shots. Not the shot itself.
In the meantime I feel like I’m lost in space, if that makes sense.
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spookiesmom, I'm so sorry. I don't have any solutions, but I'm assuming you've spoken to your MO about controlling your nausea. Do you have a palliative care doctor? I've heard they can be good at helping with SEs.
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He wrote rx for compazine, that’s it. Can’t take OTC things, am on Coumadin. Didn’t make any difference what I tried to eat. Ensure and Glucerna, applesauce gets old. But could get down.
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@sunshinegal, yes ! My parents live in Palm Desert, right off of 10. Are you in La Quinta ? We just left Sunnylands , I love going there.
Spookiesmom - so sorry to hear about your nausea, how about arimidex vs letrozole ? I have less side effects on faslodex compared to letrozole (I had more joint pain on letrozole but didn't have nausea). You might also try the new oral Serd which should get approved next month .
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spookiesmom -I did not have nausea on any of my drugs until I started a trial recently. Constant nausea sucks. Since you were prescribed compazine, I assume it doesn’t work or you can’t tolerate the SE. There are many anti nausea options. I had to try several before I found one I can tolerate. I tried Zofran 8 mg. It worked quickly but gave me a screaming headache and vision issues/dizziness. Then I tried compazine. Another no go. After a few doses I felt like I was on steroids. I was jacked up. Then I tried Zofran 4 mg. Another failure. They didn’t want to prescribe Reglan because it can cause gastric distress and I was already battling diarrhea. Next up was Promethazine (Phenergan). I take it about 30 minutes before I take the pills that give me nausea. It works for me but I was told that even if it didn’t, I had not yet exhausted my options. You should not have to suffer. You have options.
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I have question for some of you Letrozole vets. I just finished my first course of Fulvesterant and Ibrance. My CBC showed my wbc was low at 1.8 and my ANC was 786. We re-tested at one week and my ANC went up tpm800. We rest again today and my ANC is 600. Have any of you experienced these fluctuations in ANC after the first month? Up a little and then down again? Also, is it possible to recover on the ANC front and then not have that repeat in further cycles? I just want to get a feel for whether this is par for the course, or if I am going to be able to continue in the Ibrance. Any experience you can lend me would be greatly appreciated
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Spookiesmom, when I took Letrozole, I had constant heartburn and a very low appetite. I have had much better luck with Fulvesterant. I dreaded the injections, but they haven’t been bad at all. It might be worth a try for you
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gigil- I think I had that type of fluctuations in my ANC in my first few months of Ibrance . It didn't make any sense to me and it was frustrating. My onc decided to lower the Ibrance dose , and did so twice in the first 18 months . My anc and wbc have been low but acceptable to start a new cycle with just one week off on 75 mg of Ibrance.
Rk2020- how is it going on the trial ? I hope you are feeling good now that they figured out the anti nausea meds .
Believe60- how are you doing ? I think you are having radiation on your hip . Hope it's helping !
Spookiesmom - hope you have found some help with the nausea .
SF-Cakes - good news on stable and hope you are weathering the storms ok .Sunshine99- I am back home but visit my parents every few months . Maybe we can coordinate our visits and meet for coffee or a walk later this year ?
Chicagoan, I look forward to meeting you ! Will pm you soon re the dates I am in Chicago
Hope everyone is so doing as well as can be !
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aprilgirl, that would be fun. We're out to visit my dad fairly regularly.
I'm in the process of trying to get my Ibrance refilled. DH's insurance changed at the beginning of the year as his bank was acquired by another bank. New specialty pharmacy, new authorizations needed, new this, new that... I may end up taking longer that my usual 7-day break. Not much I can do about it.
Carol
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Aprilgirl-Looking forward to meeting you too!
I am currently in Iceland for a little adventure. Kind of crazy-only 6-7 hours of daylight but I'm glad I came. I like snow and cold and fingers crossed that I might see Northern Lights tonight! There's tons of tourists here. Kind of amazing they are able to attract so many of us but the rates are great and I like breaking up January with a short trip.
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