Ibrance (Palbociclib)
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Rose,
Regarding frequency of blood testing on Ibrance. I believe the protocol is to test weekly during the first cycle, bi-weekly during the second (providing WBC & neutrophils were ok during first cycle) then monthly thereafter.
DId I welcome you to the thread yet? Yikes, memory has really gone to hell lately. Anyway, welcome! Hope this will be an effective and easy tx for you.
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Thank you, jobur! And thanks again for the welcome.
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Hi, Everyone and welcome to the new Ibrancelanders,
Is anyone having dry, teary eyes with Ibrance? Itcould be the letrozole, but it is not consistent and I'm starting to think it is worse during week three to four.
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Thank you everybody for the warm welcome. I just finished my third round of ibrance. I also do a monthly Lupron shot and I take the femara. My numbers haven't really changed much it went up and down very little. The only side effects that I've had arehot flashes and a little bit of fatigue but nothing major since taking the ibrance and the shots.I have another pet scan scheduled the second week of December because my doctor isn't seeing a huge difference since starting the ibrance. So we shall see. 😊
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Jessica, Good Luck on December's Scan. The markers are sometimes so deceiving. Some ladies here had and increase in numbers and then a decrease with Ibrance. My markers doubled but then my 3 month CT scan showed stability. After that, my markers went down a little and now up a little. The scan is most important.
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Hi All-
Shetland Pony....I too am having difficulty with my eyes. About mid cycle they start watering and it is incessant! It is also a bit sticky....not sure exactly what it is?? Nasal passages are also blood tinged with lots of....for lack of a better word..."build-up". All of my labs have been stable enough to stay on the 125mg dose, but in the last week have started having worrisome hip pain. My mets are in the spine, pelvis and femur, so I hope this new nagging pain is related to a pulled muscle or something else. My initial, diagnostic scan was in July...can you ladies tell me how often you get scans? I am unable to do MRI's due to a pacemaker implant, so just wondering how often I can expect to do the PET scans. Getting info out of my onc is like pulling eye teeth!
Take care ladies and Happy Thanksgiving to all of you!!
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Great results, Moissy! So happy for you!
Hummingbird, how is your headache today? I went back and checked that FB page I'd mentioned, and while a few women had said they have headaches, they were infrequent -- like once a week. If you or anyone else is interested in that page, just shoot me a PM for the name of it. It's a closed group, so out of respect for those in it, I won't post the name here. But anyone who is on Ibrance can request to join, although I don't think it's nearly as helpful as this thread -- just one more resource.
Artist, good luck on Monday! My Alk Phos has been pretty high (444, although it did drop to 356 last month), but my onc said she wasn't concerned because my other liver functions are okay. I definitely think Ibrance can screw up our Alk Phos.
Hi, Steelrose. So glad you could start Ibrance. Is your onc pairing it with Aromasin b'cuz you've already done Letrozole? Hopefully, it will prove to be a winning combo for you!
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dlb - thank you so much for the FB Ibrance page info. I continue to get headaches, but I'm following my onc. nurse's recommendation to take Advil morning and night and that helps to keep them from becoming migraines. So now I have one more week before my week off and my oncologist wants to see what happens with the headaches during that week and also what my bloodwork shows. I really appreciate that you checked back on FB. Thank you.
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I'm sorry about your headaches, Hummingbird, and others that are suffering from this side effect. I'm taking mental notes of all of your reports… am only a week in but at least I won't be surprised when things turn up!
Deanna, I've never been on Letrozole. I was NED for four years on Anastrozole, and my oncologist's reasoning is that Aromasin works much like Anastrozole, but I need a boost (Ibrance). I'm suspicious of all of this of course, but I cross checked with the onc at UCLA and she thought it was a good shot. Fingers crossed! It's all such a crap shoot, isn't it?
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What does anyone notice the week they are off of Ibrance? This is day two off and I don't see much of a change. Should I have more energy or less? Weird feelings in my head that come and go but that's it.
Thanks
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Mason, I am having the exact same thing with nasal passages. I have started to use saline spray to help. I seem to be on a 3 month scan schedule so far but have only been diagnosed for 4 months. Shetland, my eyes too are dry so also use natural tears. Even the skin on my eyelids feels extremely dry but not too much tearing, which is weird because they actually used to be teary in the morning before the meds. No headache this morning Hummingbird, but will keep you posted. Thanks Deanna, good to know. I think Ibrance is screwing with that number too. When I went to the ER Sunday at least my blood pressure was completely normal, which it hasn't been for awhile. Feeling a LOT better the last couple of days. Small bits of good news, I'll take it! Best on the new meds Steelrose!
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Hi All,
It's been awhile since I posted. Starting week 3 of 4 cycle, I also have dry gritty eyes and bloody nasal drainage. Hope all have a good Thanksgiving.
Marilyn
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Lovesmaltese, I am just finishing cycle 6 of Ibrance. I have never experienced much difference in the week off. When I began the drug, I read what others reported and I thought that I would get a boost of energy in the week off. Nope-about the same. After a few cycles, the bit of fatigue that I felt from Ibrance seems to have subsided or I have just gotten used to the new normal. I have a few other SEs like others have reported, but for me they are very mild.
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ashleymbsmith - I was going back through this thread looking for how often people are experiencing hair loss with Ibrance and came across your post. I've just finished my first cycle and am starting cycle 2 today. Just in the last 4 - 5 days have begun to notice lots of hair loss on my clothes then really a lot on a dark towel drying my hair yesterday. Just wondering if you got other responses and how you are doing? As I recall, only 11% of the people in the phase 3 clinical trial had significant hair loss. I knew it was possible but really wasn't expecting it. Well, maybe a new look is what I need.
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Sarah- Let me chime in. I believe your hair loss is from the Faslodex you're taking, not so much the Ibrance. I lost a lot of hair for the first couple of months on Faslodex, but the good news is that it stopped, and it came back as thick as before. I never lost enough that others would notice, though. It would fall out in the shower when I washed my hair. I wasn't on Ibrance, but just Faslodex for three + years. Great drug for me, btw; hope it works for you, too!
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I have to stop Ibrance for a month with weekly blood tests to see if my liver enzymes go down. They were constantly climbing, then dipped down on my week off, then zoomed back up 2 pills into new cycle. She wants to test the theory. Really bums me out as my last scans had tumor reduction. If it appears to be the Ibrance we will try a dose reduction. I was also experiencing rapid heart rate and shortness of breath which she says is not a listed SE of this drug. But seems it subsided somewhat on the week off. also, my hair has definitely gotten thinner on either Ibrance or Femara. Not too noticeable except to me.
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artist, I am so sorry to hear about your climbing liver enzymes and the necessary break from Ibrance. During that time, things should settle down and the numbers will decrease. Hopefully, a dose reduction is what will work for you for continued success on this drug. I'll be thinking of you. Sending hugs.
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Thanks for your response, sandilee. But, I'm pretty sure mine is the Ibrance. I've been on Faslodex for 11 months and haven't had any problems with hair loss. Glad yours improved. It worked well for me with liver mets for the first 10 months. I developed some small bone mets at month 3 and added Xgeva with no problem and lots of improvement with the bone mets. Unfotunately, I only got 111 months out of Faslodex so my MO and I decided to add the Ibrance instead of Xeloda as I felt the side effects were less severe. Did you stop the Ibrance when you added Xeloda or are you on both?
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Sarah0915,
I am very interested in your post as you are the 1st person I have heard of that added Ibrance to Faslodex after progressing on Fas alone. Do I have your situation right? I have been wondering if that strategy would work, as there are several on the Fas thread whose oncs are planning to add Ibrance when Fas alone fails. I had excellent results on Fas alone, but added Ibrance in August and wonder if it would have been better to stay with Fas alone.
It's such early days with this drug. I hope it will be the combo that does it for you!
I've also noticed hair loss since starting Ibrance. Not severe, but definitely thinner.
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Thank you Hummingbird, that is what I am hoping too! Are you and your Mom doing OK? I think about you all the time....Have a nice weekend!
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jobur, if I remember correctly, I think Myra also had Ibrance added to Faslodex after Faslodex failed her.
Re. thinning hair... add me to the list of those with it. Not sure if it's the Ibrance, Faslodex, or the combo, but thank goodness is seems to have slowed down in my 4th month. The first few months, it seemed like I was literally losing a handful every time I washed my hair.
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Artistatheart
I too had rapid heart rate and shortness of breath, especially when I started taking the Ibrance/Faslodex combo. It kept me up at night, but it has been sporadic. I am in my 4th cycle and have had that feeling only once so far this cycle. I believe it is a side effect, I never experienced it before taking the meds. Almost felt like I could be having a heart attack/panic attack. Also feel like something is interfering with my swallowing. The reason they recommend having Ibrance with a meal, is because it is better absorbed into the body. I don't think it has anything to do with nausea/Indigestion. I'm trying to eat earlier in the day and am trying Pepcid AC once a day to help reduce the indigestion/uncomfortable chest feeling. My pharmacist said not to take Prilosec or Nexium if possible, because it interferes with the effectiveness of the ibrance.
I have been given two weeks off after every cycle (low WBC) and definitely feel better by the second week. Don't know if it is better to take off two weeks or lower the dose. Anyone have thoughts on that? Thanks all..
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Yes, jobur, Ibrance was added after we felt like Faslodex was no longer doing the job. I thought at first I would be coming off the Faslodex but my MO says stay on it and Xgeva. Thank goodness for health insurance that cover my meds 100% after my deductible. It is the very early days for this drug and I am hoping it will be a well tolerated treatment for those whose hormone treatment fails. Google the PALOMA-3 clinical trials and I think you will see why you doctor may be suggesting adding the Ibrance. Although there is much still to be learned, it does seem to greatly increase the progression free survival. Best of luck to you with you treatment also.
Thanks for your input on the hair thinning dlb823. Hopefully, mine will slow down soon but it is a bit disheartening. However, I'd rather be bald and feeling than the alternative.
On a different note, I am on day two of my 2nd cycle and have had that dull headache all day that several people have talked about. Not bad, but enough to let you know it's there.
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Hi all, have been away for a while. Had my PET/CT scan on Wednesday and some progression was noted. Still just in bones, no organs. I will be leaving the Ibranceland roller coaster. I will be starting Xeloda as soon as it arrives and having a bone bx on dec 4th to determine if I am eligible for a new clinical trial my MO is very excited about.
As for SEs on Ibrance/femara not fasolodex, hair loss: much thinner and does not grow, constant runny eyes and nose, sometimes bloody, fatigue, anemia, slight headaches. It was not the walk in the park for me that some have experienced.
I believe I have been one of the Ibrance Guinea pigs from the beginning with Hope, Pearlady and Sandilee. I guess 8 months isn't bad. I wish you all good results and long term non progression. I will be checking in from time to time. Much love. Myra.
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Good that is has stayed in the bones Myra with no organs. That is huge I think. I have had all kinds of SE's but nothing that was too dramatic until I had the rapid heart beat and shortness of breath. I think it builds up in your system slowly and other stuff starts to show up. Yes Nina, I definitely think it is an SE as I am already feeling better after two nights off again. Hope the liver enzymes go down and I can try the lower dose because of what Sarah said and we all know the Ibrance supposedly doubles the progression free time. My hair isn't growing very fast like it normally does either! Oh well, a small price to pay.
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Artist, I agree that maybe the Ibrance kind of wears on us, with more side effects showing up over time. Maybe your body is just saying please lower the dose. My onc says that they typically use high doses in trials, but that doesn't mean we really need it that high. Have you been on 125 mg? I went from 125 mg to 100 mg to 75 mg, and am surprised to find I'm ok with that. I figure if the higher dose is that hard on my body, then lower is better for my overall health as well as QOL, since this is hopefully a long-term med for me. So, Nina, my opinion and my onc's is that for me at least, it is better to lower the dose then stay on a higher dose and take lots of time off.
Lovesmaltese, regarding how you feel on your week off, typically I feel best halfway through the week off and into the first week on. And here is a bit more on that: I noticed recently that unlike the first few cycles, I didn't feel much better on my week off. We discovered that my blood counts were not getting back up where they should be during that week. We would test at day 22, find them quite low and assume they would be back up for day 1 of the next cycle. But when we tested on what was supposed to be day 1, we discovered they were still too low. So we waited an extra week and lowered the dose.
Masonsmawmaw, I have been getting PET scans every three months, but am switching to every four. Could your hip pain be joint pain from letrozole and faslodex?
Myra, you were one of the first people I "met" here when I started Ibrance, and it was so reassuring to hear what you and the others had to say. I wish you well on Xeloda. It's great that your onc has a clinical trial in mind for you. It shows he is paying attention.
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Myra - I'm so sorry to hear you have had some progression. You have shared so much info with all of us and been a real trailblazer here! Thank you for helping to shape this thread early on. Wishing you well, and I hope the new trial turns out to be a good fit for you!
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Myra, I'm so sorry to hear of your progression. It seems we have a lot in common and I'm about a month behind you.
I'm also wondering about my condition since I just spent 2 nights in the hospital trying to get a new pain in my left hip under control. Brand new pain and very severe.
Myra, best wishes in your next steps. Maybe we'll meet in another board.
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Myra - very sorry to hear that your scan showed some progression. Of course it's always scary and disappointing to get results like that. But the progression is still just in your bones and I was always told that then it's very treatable. At least it's something positive to focus on. Please let us know if you get on that new trial. Good Luck, Myra. Wishing you a long success on your next treatmen. Keep us updated.
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Myra
So sorry to yea of your progression-I know how disappointed you must feel
Babs
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