Ibrance (Palbociclib)
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Momatt- Been thinking of you and Dani so thanks for posting! Following Dani with the numbness in her face and also paying attention to the lady with the same issue in the FB Ibrance group-- She finally went to a new MO (I think associated with UCLA) but don't quote me on it. If I understand this correctly, she will be on Ibrance, Letrozole and faslodex- all three? New MO contributed numbness to her skull mets.
Hope your email gets some attention asap.
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Momall, thanks for your reply. I've been reading this forum for awhile now and it appears that not only is your daughter fighting this d--n disease but you are too. Either way, you have my complete admiration. Your signature says it all, once a mom always a mom. We have three daughters as well as a son and I always worry about their chances. I'm going to try to do genetic testing.
To answer your question, I'm not sure if I am triple positive but I don't think so. I have the pathology report but I'm not sure how to read it all. I see references to Her2/Cep 17 and her2- Neu fish. I'm going to ask my MO. 25 years ago the doctors barely told you that you were estrogen +. I was never even give a stage for my cancer and I wasn't on the internet (was there one?😉). Times have changed and I'm still trying to wrap my head around all of this, it was such a shock. I went to an allergist for what I thought were bad allergies causing a cough. A chest X-Ray found my tumor in the lung. It's all happened so fast I'm still gathering information. I think I'm lucky to have found a good doctor who is the head of a cancer center near me although not one of the biggies, he is connected to the Un. Of Chicago and trained at John Hopkins. So, I have just trusted his advice and opinions. I do expect to continue finding out as much as I can. These forums have been a godsend for me. Thanks to all these strong very smart women, I already feel more able to handle this "thing". I pray for all of you.
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Momall, thanks for the concern. It's a really tiny lumpy thing I can only feel in one position, but I will keep an eye on it.
Faith, is does take some time and questions and research to learn the lingo. You had a lot of years to not pay attention to the terms. I had never heard of HER2 before MBC either. I did know about ER/PR because of the tamoxifen I was on. This board is a wealth of information for sure
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LovesM the thing w the skull mets is that she has had it for almost 2 years. And if it would be pressing on a nerve I would hope it would have shown in the scans, which it did not. That's the conundrum. i think for people that are not aware yet of their mets and feel numbness, tingling and then the MRI would show the Mets, yeah, maybe, but here...I don't think we are gonna wait too long before seeing a Neuro, but Dani really does not wanna go to yet another doc, so maybe another few days. At least it did not get worse, a drop better. Thank you for the advice.
Faith first thank you. Always a mom. And you know I have to dance the two steps back right???
Definitely this place is my solace. I cannot even begin to address the many times, that besides of course the great warm support, I have gotten great knowledge, advice, and I felt pushed by many here to push my own boundaries. Sometimes I don't wanna bother a doctor, or secr, or nurse and I think what would this and this person do?? And sometimes they literally have pushed me. Here and in other threads in this site. My daughter did to genetic testing, it was negative. Still pondering on the other girls if they should do it. Let's just say, we should I think, but afraid of the results? maybe? They are young, single and just being there for their sister it's been so harsh on them, because it's been one thing after another, always something showing up, I cannot even remember when she was NED, (she wasn't really), so it's a every minute of the day in their minds. Everything we do, everything they do is working around her, their work, their time off; she never asked, she doesn't even know how much they turn their schedule around her, but it is what it is. They would move further, but no one is budging. What are the ages of your daughters? We were told that the sibs being younger than Dani, should have screening of Mamo at the age of her dx. So they did. (and actually had to deal with some tough results, but that's another story).
Re: the Fish results, did you do a bone biopsy? It would show in the pathology for instance, Dani's results is Her2+ +++ I think that would show it's def Her2+ (the triple plus sign on the pathology report). Sometimes they say equivocal, that means it's not for sure...also, the biopsy was done twice a yr apart, once it was a bone biopsy done and sent to Foundation One to help identify the best tx (it did not help her much unfortunately), and the 2nd time to Gardant360 pretty much the same thing. Her status changed from the original dx of ER+PR+HER2- to ER+PR+HER2+ , there was a lot of progression and very aggressive, till the ex Onco finally ordered a rebiopsy, and then they realized they were def targetg the wrong type.
Hope this helped.
As it stands now, Onco is adding Herceptin to the mixture of Ibrance and Letrozole, because as I've also learned recently from wonderful ladies in this site, in this thread and others, is that there could be different Her2, intracellular or extracellular and so on, and that different therapies could target different pathways. So if I understood, he said that bcs she had progression and new lesions! (I did not think there were any more room, sorry but I gotta laugh, maybe I am too tired) but some stability he believes Ibrance could be doing something, but then use Herceptin for those Her2 that escaped. Hope it makes sense.
(still revising my email, I started in the middle of the night, too many curse words
gonna be nice, gotta change that!)0 -
Hi ladies. Some of your names are familiar from the bone mets thread. I was just diagnosed in March with bone mets and changed from Aromasin to Femara the next day. I just started my 2nd round of Ibrance 125 and am praying it works soon. I had a CT scan 3/10/16, and another one about 14 days ago, which showed 2 lesions on my vertebrae that weren't there on the March scan. My biggest complaint with Ibrance has been constipation. The nurse kept warning me about diarrhea, which never happened. My arms and scalp itch a little, and I have a rawness in my esophagus after the first week, but all are tolerable.
Reading all of the posts gives me hope this is a good drug and I need to give it a chance to work. My next scan won't be until June, so I guess I need to be patient. Thanks to all for the great information.
Deb
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Maybe this will be helpful to someone .. I have noticed a few times that some gals have had either mouth sores or rawness in the esophagus. Someone once posted (perhaps it was Bestbird, but I'm not sure) that to avoid mouth sores you should coat the Ibrance with something like Cool Whip. I have been doing that since I started the drug and haven't had any mouth sores, and have just completed 3 cycles.
Diane
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Most of my SEs (Ibrance and xgeva) went away after first two rounds except the fatigue. Just be sure you eat with Ibrance. I have forgotten to take meds a couple days this week. It's my week three and I'm struggling. Running late with kids in the am makes me forget to take them. So will ask to drop to 75. And we're running late because I'm tired and don't get up in a timely manner. It's becoming a common occurrence. I don't want it to be a habit! Only three weeks left of school!
I was kicking and screaming when dropped to 100 but with good results.I'm hoping it will still do its job and give me more umph. I can always go back up if my onc would agree. It has happened before, just not common.
The arimidex is what gives me constipation. Usually a couple of prunes daily (good for bones too!) and magnesium at night. It can cause cramping the first day. There is a constipation thread.
I find insomnia is the worst with this round. Feel like I need help or maybe an anti depressant but scared to add anymore SEs to the mix. Previous antidepressants didn't work. But I believe chemo changes a body so maybe I shouldn't be afraid.
I still have the stuffy nose. Of course it's allergy season so can't get much response that it's Ibrance but we know our bodies so well at this point. Nose spray helps.
Good luck to everyone. And momal. Dani is lucky to have you.
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Momallthetime, you are so right about dancing the two steps back especially with daughters, no matter what it is. My girls are 48,51,and 53. I was diagnosed the first time at age 50 so of course we are all a bit concerned and they do have regular mammograms. I one I worry about the most is the youngest, she is the most like me in body type. Whether that means anything or not, I have no idea.
I did not have a bone biopsy, my meds were to the lung and a few lymph nodes. From reading the report, I see no mention of triple plus +++ for estrogen. I'm sure that must be a source of concern for you and hope you can find someone with a similar history. It really helps to have someone else weigh in on side effects, and treatments, etc.
I'm wondering if anyone has experienced an extremely dry throat with the Ibrance/letrozole combination? Besides the fatigue, hair loss, etc that is one of the things that bothers me the most. It feels like someone has stuck blotter paper down my throat. Tons of water does not help much, I'm constantly sucking on cough drops or something. I'm hoping if I drop to 100mg of Ibrance that will get better unless it's also a SE of the letrozole. So many things I think are related to Ibrance, I'm finding out are really Letrozole.
I feel ungrateful to complain about side effects when I know I'm so lucky that I am having a good response to this treatment. It's just that like almost everyone here, I feel down sometimes. I thought I had put this behind me 25 years ago. Oh well, it could be so much worse, I have a dear friend who is probably close to death with a rare cancer in her bile ducts and I'm sure this contributes to my mood. Sometimes we have to keep putting one foot in front of the other and enjoy what we have right here and now. I'm going to try hard to do that.
Faith (in the future)
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Hi CHICAS, I just stopped by to say hi, congratulate everyone that is doing well and for the chicas that are still not doing so well I want them to know that I always pray for them.
I'm not so good at keeping you all up to date and I'm sorry about that.
I doing well ,I playing tennis, I run, I do Pilates and yoga. I'll have a CT SCAN and my blood work next week.
Cheers chicas las quiero mucho.
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Hi all,
My wife started taking Ibrance 2 weeks back and today her lab work showed the following numbers
WBC 1.5 K/uL
NEUT, ABS 0.51 K/uL
LYM, ABS 0.86 K/uL
MONO, ABS 0.07 K/uL
Platelet count 106 K/uL
Onc told her to hold off for one, check the numbers again and then decide. Has anyone faced such situation ? She underwent radiation to her pelvis which lowered her numbers below normal (but not this low) a couple of weeks before she started Ibrance.
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I don't remember my labs exactly but had low numbers in the beginning. Think I got extra time and dropped the dose. It's pretty common. I had a big temper tantrum about dropping but my scans were better than expected.
I know it's scary but it's a known SE. I'm nowon a regular 28 day cycle after three rounds. It takes time to adjust. I was told to eat the rainbow and walk.
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Deanna, a belated thank-you for your suggestion of curcumin and Inflammo-Less for joint pain/neuropathy. I will try them!
I saw my onc. yesterday and my labs look good despite how tired I am. I know I'm sleep deprived and can't figure out if it's the Ibrance or Aromasin. So many side effects! But as long as it's working and I'm still upright…
Hang in there, everyone!
Rose.
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Thanks for your feedback, everyone. I am underweight right now, after chemo and surgery earlier this year. But my oncologist said that while Ibrance dosage does not take weight into account, she believes that sensitivity to the drug is more metabolic than weight-based...
So the next step will be to give my body a break for a while once my counts return to normal and then retry at the lowest dose (75 mg) later on this summer. Hoping that works!
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Welcome to all the new folks. For those who asked about very low counts at beginning, my ANC (absolute neutrophil count) did drop to .5 on my first cycle at 125. Took extra time off and was dropped to 100 for second cycle. Still needed extra time and was then dropped to 75, which I have been on regularly now without the need to take extra days off. Am on cycle 10 now. I do experience fewer side effects on the lower dosage. Although I was very concerned about dropping to lower dosage, this treatment has been very effective for me so far. Wishing you all good response!
Kaption - I'm sorry to hear the markers are going up. Hope your scans continue to show stable!
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Hi All -
I was newly diagnosed with metastatic ER+PR+ to my liver in January. I monitor this thread and appreciate your experience and wisdom very much. I have a question for you.
I had pet scan after two cycles of palbociclib and 10 weeks of letrozol. I have 12 tumors spread across my lymph nodes and liver. All are now less than half the size (by volume) they were when I was first diagnosed in January. I am trying to figure out if my complementary therapies are worth the side effects. Is that was a normal response in a normal time for letrozole and pablociclib? Or is that the complementary therapy working?
As for side effects, the worst thing is poor sleep. I feel fatigued but I don't attribute the fatigue to the medicine directly. I just don't sleep well. I have some nausea, thin skin that breaks easily, and a weird skin rash in my groin area. My WBC and neutrophils get low, but nothing scary. I got a nasty sore throat in the 3rd week of my last cycle, but soldiered through it as my CBC was normal and I seem to have beat it even on the palbociclib. I haven't been through either chemotherapy or radiation and that has got to help.
In sum, I am 140lbs and taking 125mg and doing okay on this combination. It is not a easy, but the tumor in my breast feels even smaller after the 3rd cycle (3 weeks after my pet scan). As long as the treatment is working, the side effects don't get to my head and my spirits are good. My heart and prayers go out to all of you with tougher decisions to make. I am still early on in this fight. I am learning from this thread what it takes to make it through years of this. I hope I have what it takes.
Prayers to you all.
>KNC<
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those are low CBC numbers. her immune system is slammed. my understanding is that we can play with the dosage and dosing of palbo to find the right balance between treatment and preserving your basic health. so you go off and you recheck as your oncologist suggests. depending on the next CBC panel, you can lower the dosage, you can lower the amount of time you stay on pablo or you can increase the break you give yourself. my oncologist is a little far away and she has given me free reign to adjust my dosing based on side effects and CBC. i go to my local doctor and get a CBC panel anytime i have concerns. a lot of things can effect your CBC results, including previous radiation treatment as you suggest.
as you read the thread, you will see that we're all trying to figure out what the effective dose is for us based on our weight, condition and the side effects. i've been able to stay at the highest dose and dosing, but i have had no previous treatment. we all want to be at the highest dose we can tolerate and BEAT THIS THING, but I don't believe we can fight cancer without a functioning immune system. two weeks on, and two weeks off is a common protocol for palbo.
pray, mediate, and talk to your oncologist. you will find the right dosage protocol for your wife. it will be unique to your wife.
>KNC<
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Thanks, Moissy. It does worry me a bit. It's the highest TM since she started using the CEA (right before the switch to Ibrance). I see her May 23-then scan a couple of weeks later.
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Ziz, Good to hear from you, sounds like you are doing very well! Good luck on next week's scan.
Rose, I don't know about Aromasin but I can definitely attest to Ibrance affecting my sleep. I went off it for a month in February and slept like a baby. Now back to having trouble falling asleep and seem to wake up almost every hour. I have very intense dreams too. Not complaining, just saying. Do you have any sleep aids to use? I take Ambien occasionally and it works well.
Welcome to those new to this thread. I am now on my 10th cycle and though the fatigue and poor sleep persist most of the other se's have disappeared or lessened. My last scan showed complete metabolic response. Hope you will have good results too.
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I started on 100mg but numbers went too low after first round.MO dropped me to 75mg. Have had one scan so far that showed stability and small decrease in one nodule. 2nd scans coming up in 2 weeks. I am still on 75mg.
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Jobar- I have to take Ibrance in am after breakfast and falling asleep is still hard. What works the best (better than Ambien) is lorazepam. I take one an hour before sleep and I can get 7 straight hours. Yes some crazy dreams but it works great for me. I'm on cycle 7.
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jobur, for what it's worth, I also moved my Ibrance dose to after breakfast or lunch -- depending on which is bigger -- because taking it at night disturbed my sleep as well. I also just yesterday bought a natural sleep aid, Sleep Support by BlueBonnet. I chose it because one of the primary ingredients, in addition to Valerian and Camomile, is Tart Cherry Extract. And no Melatonin, which I don't personally care for, although I know it's supposed to be good for fighting cancer as well as sleep. Anyway, I used the BlueBonnet product last night and slept surprisingly well. I'll keep you posted if it continues to work, if you're interested.
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Jobur, congratulations on complete metabolic response! You mentioned it in such an off-hand way, but that's fantastic. That's with Ibrance + Faslodex, right?
Sleep: So, Deanna, how sure are you that taking the Ibrance at night disturbed your sleep? I switched mine from lunch to dinner this cycle because of the idea that cancer may be more active during the night, and I wanted peak blood concentrations then. But I have had more insomnia lately and am trying to figure out if there is any rhyme or reason to it. Thanks for reminding me about chamomile and tart cherry. I used to eat melatonin foods like oatmeal with dried cherries for a bedtime snack, but have gotten out of the habit.
Dosing: Aks, your onc's comment about Ibrance dosing and response being more about individual metabolism than weight is very interesting. I didn't understand why the Ibrance literature basically said the study patients' weight didn't matter, but now it makes more sense. Along the lines of Zarovska's comment, it seems we each need to find the right dose that will help fight cancer without beating up our bodies so much that our immune systems and general health are too compromised to help in the fight.
Faith, to answer some of your questions a couple pages back. Yes, for me reducing the dose reduced the side effects. Going from 125 to 100 stopped the mouth sores, and going from 100 to 75 made the fatigue livable. For dry mouth or throat, you might try ginger tea. It is supposed to increase saliva and has the added benefit of being anti-inflammatory. If your pulmonologist thinks letrozole is causing your problem, ask your onc about using faslodex instead. It works differently than the aromatase inhibitors and is now being used with Ibrance.
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Shetland pony, thanks for your reply. I'm glad to hear reducing the dosage helps with the side effects, the fatigue really bothers me as well as the shortness of breath. There may be other causes for the breath thing such as allergy induced asthma which I'm going to be tested for. My allergies are especially bad right now so that could be it also. It's exhausting trying to narrow this down and I'm sure everyone gets tired of doctors and tests, just like I do. I will ask about the faslodex if things don't improve.
It's strange to hear of other's side effects. I have always had sleep issues but now most nights I sleep better than I used to with only an occasional sleepless night. I take the Ibrance after breakfast as that is my most regular meal time wise and I was told to take it at about the same time each day. I'm also having lots of indigestion and don't know if that's another side effect or not? Anyone else having that problem?
Thank you to all on this site, it really helps to have some place to ask questions and just vent sometimes
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Kaption sorry for the TM's directions. I have read here that sometimes TM's going up is just the actual healing? I don't know, bcs Dani's been creeping up also and the CA 27.29, I was hoping it's gonna change, so we keep watching.
Letmywife..these are very common number with my daughter, and most of the time, she continues on and takes the BT the wk after, and it usually levels up on it's own. But of course everyone is different. But even one time when all the #s were very low, she took Neupogen, waited only a few days and then redid the BT. good luck.
Question: Ladies, What's more important the Neutrophils Absolute or Lymphocytes Absolute, meaning when would your doctor tell you your numbers are too low, bcs it seems to me Dani's doc goes by Lymphocytes Abs. more than Neutr. Absolute.
Moissy didn't hear from you in awhile, so glad you doing ok.
Deanna this seems like such a calming tea, i shall try it. I am taking some stuff, but I wake up in the middle of the night and have a real hard time falling back asleep. And Deanna thanks for all your help.
Shetland how are you coming along?
Guys, also, I just realized looking at the bone biopsy pathology report, it showed: ER+ PR weak (<1) this changed from the original dx, and of course the HER2 that showed a change at that biopsy. I never realized it b4, does it have any effect on any outcomes? Is it still considered strong hormonal? she is not on chemo now, but it just surprised me to see. It's from 1 yr and half ago. I figured I am gonna ask around. TIA
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Thanks a lot ladies. Keeping fingers crossed that the numbers show up during next round of lab works. This drug is so new that it will take researchers and doctors a few years to understand the correct dosage.
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MomAtt- when a bone biopsy is done it has to decalisfy the bone and by doing so it looses its ER/PR status if not done correctly. That had happenened to me twice. Accordingly to my report I should not be responding to my treatment but so far I have. I will pm you my report and what I am referring too.
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Hi.
I started Ibrance and Femera about 2 weeks ago. I have er+ pr- her2- cancer. I haven't read through the whole thread, but I've read the first 50 pages or so. In that time, I've seen a few people who are pr- like me. It seems like everyone of them did not have much luck with Ibrance. Is there anyone here who is pr- that did well with Ibrance?
Thanks,
Joellen
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jobur, so wonderful to read your good news about your response to Ibrance!! Gives us all hope.
I've got a list of supplements to pick up at the drugstore, including Melatonin for sleep (suggested by onc.). If that doesn't help, she wants me to try low dose Lexapro. Guess that works for depression as well as sleep? Couldn't hurt, especially since I'm pacing the nights away these days. I think my nerves are literally shot from all these years of treatment! Still the good outweighs the bad, and I continue to work and travel through it all.
Thinking of everyone here, and hoping for more and more good reports…
Rose.
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Girls, I have a quick question which requires an immediate response. I'm going out of town in the a.m. for four days so may not have a chance to call my oncol. I will be taking my last 75 mg of Ibrance for this cycle with Letrozole tomorrow. Should I continue to take Letrozole by itself until I start my next cycle of Ibrance? I never thought to ask my doc. as I was taking the monthly Faslodex and 125 Ibrance until this month. I noticed on my Letrozole prescription I have a 30 day supply. Please respond. Thanks bunches!
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I take letrozole every day without a break. The ibrance is the only one I take 21 days on and 7 days off. I'm pretty sure that is the protocol for this drug combo but you should check with your oncologist since we don't know if you have a different regimen. Take the letrozole with you. Better to have it and not need it than to need it and not have it.
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