Ibrance (Palbociclib)
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Thanks everyone!
Miss Rabbit...I'm sad but also glad too that I'm not alone as well. I also noticed that I get bouts of sadness or anger (about the cancer) more often too on the tablets. I hate when I have a pity party for myself but I guess we can't be strong all of the time. Anyway, I hope we hear from more ladies about this.
Candy...when I was first diagnosed back in 2009, I was 48 years old and was still getting my period normally. I was given TAC chemo and that pushed me into menopause. I was then on Tamoxifen for 5 years and the hot flashes from the initial TAC and then the Tamoxifen (and subsequent Femara) were awful! I would be standing in line at the supermarket and I would be sweating profusely where it was literally dripping off of me. So embarrassing. My joint pain started then too but not as bad as it is now with Ibrance/Faslodex/Xgeva. Now I feel like an 80 year old woman, but then again there are many 80 year olds that seem to get around a lot better than me. I guess it's has a lot to do with where the tumor was too. But, the hot flashes are much much less now. I think being forced into menopause must have much worse symptoms, especially with everything else our bodies are going through. Hang in there.
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Candy,
I am 59 and I went through regular menopause. I did have hot flashes but not the kind that drenched me. I don't get them anymore. One of my non cancer friends has been getting them for over 10 years. She said she'll wake up at night and be drenched.
I use to cry over nothing or get angry over stupid stuff. I am so glad I am over that.
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I went through menoand never knew it. I had to ask for a blood test, which said yep, you done. But I was driving a un a/c school bus in the Florida heat and humidity so was always soaked. When I started aramidex the flashes weren’t bad. I had worse sweats from glucose crashes. The joint pain was awful.
DH has bone Mets from prostate ca. He gets the sweats from his treatment like is talked about here. He looks like he’s in the shower, dripping so much. But what’s your choices? Carry a hand towel with you, roll the best you can.
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Candy, I tried ovarian suppression, monthly dose twice and then one of the 3 month doses. Had no effect on me really, a tad warm a few times but overall that was it. I then had my ovaries out because they wouldn't shut down and then Wham!! I was hot flash city, pouring sweat. Then I started the hormone therapy. Things sort of leveled off but now this summer I've noticed I do not tolerate heat. I need to be in an air conditioning consistantly now. I'm glad you mentioned the feeling of dread because thats been happening before a flash comes. I even cry before the start of one now. I've been wondering what that was so, I'm really glad someone mentioned it because I was having these reactions and kinda was going to keep it to myself, i felt the dread feeling might be judged as just depression/fear etc, when I knew it wasn't. My mother in law went through normal menopause and hasn't had anything of what I describe. Then again, I went through surgical menopause instantly at 37 so maybe the extra time to slowly over alot longer period of time for the body to lose estrogen makes the symptoms not so bad if you go through menopause normally. Maybe the drugs push the gas on the symptoms and make them more intense then they would be otherwise?
Jackie, yep, same. I really feel these tablets are more potent. The build up of 3 cycles on them has made me feel too tired to mow my lawn. Just doing a load of laundry or showering is like i've run a marathon. No rebound on the time off before next cycle either. I'm dropping down to 100mg. Will give that a couple cycles try, if i still feel like this i'll drop to 75mg. And its tiredness as well, not sleepy, just really winded tired. Did not have any of this on the capsules so, hope others having same problem will chime in. I still notice the taste/smell of the tablets as well. Did not have that with capsules either. We are strong everyday we get up no matter the emotional state. Being able to endure and press forward is strength
PS: I signed up to this page that shares unique pictures of landscapes animals etc called The Fabulous Weird Trotters. Its kinda a pick me up to see what pops up each day. Ever since I saw this little guy I was hooked. He looks like he belongs rooted in the gravel of a fish tank.
It's Saturniidae Moth Caterpillar. Pretty little fella ain't he?
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Thank you all for the responses to my hormone/hot flash issues. Crazy that I (we) have to go thru the hot flashes and dripping sweat, the dread/emotional feelings, and the joint pain PLUS the fatigue, constipation, and hair loss of the cancer meds. I know that the strong cancer meds have side effects, but seems an added crappyness to have to deal with the yuck of the lowered hormones/menopause stuff too. I sure do not feel like the person I was before all this cancer/cancer med stuff. We talk QOL. I am very thankful that the cancer is stable, but all this is not a great QOL. Yes, Radagast I too have to stay in the AC-- cannot tolerate being in the yard or at an outside event. I actually get faint feeling.
Can we do anything for these hormone/menopausal symptoms of the hot flashes, dread/emotional feelings? I wish something could make them milder. QOL.
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I keep getting capsules. Now I hope that continues. You know what I thought of when I heard about the tablets? You could cut them. I'm probably the only one to think of that. I have a really sharp pill cutter and have cut several types of pills in half. What if you just sliced off a small piece to make it a little smaller. I do not recommend that but wanted to give you a look into what it is like to be me.
Pat, I hate hate hate nausea. Could you not use the sublingual stuff other times, too? Does it not last very long? Is it expensive? I guess you've investigated other solutions and found them lacking. Nausea is horrible.
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This might be TMI. I’ve found if I can keep the constipation limited, the nausea is less. My DD says it’s because stuff is pushing up on my stomach. So if I manage to poo, and an OTC Pepcid keeps the nausea down. At least enough to take the fur kids to the dog park. And that makes one of them very happy
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Achy joints - I just got back from seeing my MO and am getting caught up. It just so happens that this is the first appointment that I complained about increasingly achy joints. I have been taking Fulvestrant since March. My MO said it’s the lack of estrogen that is no longer cushioning my joints. He made some analogy to a mouse trap and how estrogen would reduce the snap in the trap. So he said my existing arthritis is acting up due to the lack of estrogen. What he said makes sense because prior to taking a SERD I had stiff hands and feet. Now they are worse and other joints like my elbows are acting up.
Hot flashes and menopause - I’m a half and half girl. For about a year before my initial DX I was having hot flashes. Not dripping but I definitely got wet and they were frequent - all day and night. Then after AC+T chemo, I was on Tamoxifin for 3.5 years. In the beginning I had terrible night sweats - the sheets, let alone me were wringing wet but I felt cold. I was washing sheets and nightgowns constantly. Then things leveled off. For about 3 years I only had occasional hot flashes and no more night sweats. My blood test said I was post menopausal. Well apparently I was still makI got some estrogen because when they put me on Fulvestrant the hot flashes started all over again. And I also get the feeling of dread. I’m going to ask my gf who doesn’t have cancer if she gets the dread beforehand.Jaycee49 - The safety info that comes with the Ibrance tablets specifically states not to cut the tablets.
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candy, thanks for starting this discussion, it was helpful to see all common se, otherwise I would continue to keep them for myself. Every month I get zoladex injection to my belly. I thought strong hot flash is related to starting letrozole white I wasn’t completely menopause. osteoarthritis can be another se of medications. MO believes joint pain is common with endocrine therapy. I am sure my bones were quite healthy before starting treatment, very recent bone scan shows degenerative activities in hips, elbows, knees, shoulders etc. Now makes sense causes of pain in my elbows shoulder and si joint and creaky knees and knee noise, I gradually become slow and slower. Added to hot flash fatigue nausea joint pain hair loss, shortness of breath.... life is still good! Really??
by the way today is my first cancerversary! 💃
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Candy, I’ve had the constipation issue for a long time. I started taking the store brand for Miralax. You put it in water once a day. It has no taste, and it’s not a laxative. It puts water in your colon. I also take one 100 mg stool softener if I need it, and I’ve been going almost every day. it’s been much better as long as I do that every day.
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Re menopause: How do we know when to stop taking ovarian suppression medication. I’m on zoladex for a year. My labs demonstrate ovarian suppression. However I had partial hysterectomy 4 years ago, kept ovaries. In hindsight that was a bad idea. In any rate just wondering how you can tell if you are post menopause if on an ovarian suppression injection? Obviously I don’t want to be on zoladex if unnecessary. Thanks
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I beat it, 1 year and many more!
September 27th 2018 I had my first AC treatment. That was the infusion I went to having drunk 2 liters of water before hand because they told me to be well hydrated. I informed my infusion nurse I think I hydrated a bit too much. I lived in the bathroom. Infusion nurse kept asking my mother in law where I was. Had to keep unplugging myself and heel toe it to the bathroom as more stuff was pumped into me. Then a whirlwind came. May 17th 2020 I hit 1 yr MBC. I kinda relive groundhogs day. This time a couple years ago I was doing this. I was doing that. I remember all the dates amazingly even tho I can't remember much else.
Candy, QOL I think is very important. For me personally thats the ultimate goal regarding treatments etc. My thoughts mirrored yours the other day, sure do have put up with alot to hear "stable". But hearing stable is like hitting the lottery with this disease and not the normal kind of lottery either. The kind of lottery that's cruel and "kind" all at the same time. That throws us a bone and then says but this is the cost. Until is decides to be completely cruel and tries to take away all hope. I think we just become experts in adjusting and finding ways to make things work. We really are entrepreneurs in the field of invention. We find more ways to cope via each other by sharing our experiences and what worked and didn't. It's more than I could ever find anywhere else in a some book or pamphlet. I learn more amongst those grappling with the same reality. It's a good thing and a sad thing.
I Nestle in my igloo. Layer clothing for outside, half thought of getting a handheld battery fan for outside. Drink lots of chilled water and sometimes put a ice cold hand towel behind my neck. Have about a million pillows on the bed to try and help with my back. Replacing the livingroom recliner because 52lb furbaby wants to be on me with it reclined and just broke it. Im actually looking forward to winter for the cold even tho I'll terribly miss the green. I find moving helps with achenesss, but until I stop feeling like I completed a decathlon, my body movement ambitions will need to be put on hold. Sometimes I'm not sure what to do. I just go with what sounds good in the moment.
Spookiesmom, agreed! Keeping the choo choo train moving helps keep nausea and that unappetizing food thing away. My dog fur kid is 12yrs old but wants everyone to know he's still the stud. Last time we went to the dog park he tried to dominate all the other big dogs including a great Dane. Then he caught wind of all the yipping little dogs across the chain link and thought heyyyyy, those look like fun! lol.
BevJen, Sondra, Aprilgirl, Philly, hope your all doing ok.
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I learned on BCO that even if our ovaries are gone, or quit, we still make estrogen through the adrenal system. But they are the main producers. I also use generic Miralax, put it in my coffee. Can’t taste it, not gritty. Sometimes even that isn’t enough
Spookie is 8#, her poodle brother is 23#. They both want to eat up the big dogs, some whose heads are bigger than all of Spookie. But this gets me out of the house almost daily, see and talk to others. If I feel like it. And we go after dinner, so if I’m wiped out, I can chill.
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Ppl at dog park told me about this. Available from Amazon, $17. Get about an hour on high speed, rechargeable battery. Really helps there, or like last week when my power was off 4 times in 36 hours.0 -
I remember at one Zoladex injection the nurse mentioned it can only be used for five years. I said well, what happens after five years? "You should hopefully be in menopause at that point." I didn't have the heart to tell her I'm 43 and late stage.
I worry I am still making estrogen, as (oh god, this sounds bitchy) I only have a few hot flashes per day, no sweating, and I more or less feel fine. In fact, I feel better without estrogen, pretty sane and level headed. I've had many years, though, of aches and pains from old sports injuries, so maybe there are new ones and I just don't notice now!
Unless folks catch me on a day 10-13 lately when I am having nausea/upset stomach. Then watch the HELL out.
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Love you ladies !!!! Only on here we can talk about our bowels!!! Today was prune juice day for me. TMI. Results within a couple of hours. Woohoo.
Ok, so that explains my achyness-- I have untreated rheumatoid arthritis too. I was on a RA med before the cancer. When the cancer came, my rheumy stopped the med. Just had yearly appt with him and he again denied restarting RA meds on me due to them causing immunosuppression and everything with my counts anyway. So.... that explains why I hurt so much. Thanks RK2020 for mentioning that about the Letrozole making existing arthritis worse.
I-beat-it-- Yes it helps to know others are experiencing what we are. We are in this together. And I am not crazy.
Tinkerbell- YES. I have that question too. If we do blood testing, won't it just show the ovarian suppression and not really show menopausal status. And, I know, they say with "normal" menopause it is no period for a year. But with suppression we are artificially stopping our periods, so we cannot use that measure. I need to ask MO or GYN. If you find an answer, let me know.
Edited to add--- Sondra- I felt better with my periods. I guess I didn't really have PMS. Now, I feel emotional right before the flash. Anxious and tearful. Like having PMS all the time. Fun Fun.
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I-beat-it . I was given a short note on what to eat for a PET the day before. Basically, LOW LOW carbs. They give you sugar IV the day of which cancer feeds on and makes it light up. They got annoyed when I asked how many carbs? Or why is milk ok, but unflavored yogurt is not ok.
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Increased SEs capsulte to tablets. I think I am more prone to dehydration. Have felt very mild/ in the background headaches, similar to when I know I have not been drinking enough water. My dose was dropped from 125 to 100 at the same time. I am farting a little less. Fatigue much better than the first several months. I just finished cycle 12. For those still on capsules, if you can stand to read the very tiny print fact sheet that comes with the capsules, food might more important than anybody bothers to tell you. Pfeizer describes studying adsorption comparing fasting to 3 levels of calories/fat. They do not describe the time interval for eating and taking pill. But a 1000 calories / 30% fat had the best adsorption, fasting the worse. A pharmacist did not understand my question when I asked what changed between capsules/tablets , insisting that the active ingredient did not change. Do not know if the meal was eaten before/during/after over several hours or at one time.
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BlueGirlRedState...no one stressed the fact to me that the capsules should have been taken with food. It may have been mentioned in the beginning and I just didn't pick up on it because it was such a terrible time. But I thought when it said TAKE WITH FOOD I assumed it meant for nausea/stomach purposes. It never entered my mind that it was for absorption. So I always took mine around 3pm, not on a completely empty stomach but not with food either. I worry that I wasn't getting the full effect of the med for two years. I told my MO once I started the tablets and he wasn't concerned. But maybe he just figured there was nothing I could do about it now.
Anyone else here not take the capsules with food or am I the only dummy?
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Jack5ie,
I'm in my cycle 12 of Ibrance, and so the first many months were with the capsules -- I think I am on the third cycle now with the tablets.
I have to tell you -- no one at my MO's office told me about taking the pills with meals, and none of the more sophisticated stuff that I heard here about fats, etc. -- I learned all of that here (and then I grabbed the insert to verify). Nevertheless, I was never too sure if I should take the capsules with a meal or just afterwards -- or what if I was having dessert later on (come on, that's usually a fat?) so I just did the best that I could. I did read the insert that came with it, but as many of us do, I zoned out on some of it, I'm sure
I was in the habit of taking my letrozole in the evenings so as to minimize nausea and other side effects, and I take my Ibrance after my dinner bc that's been my pattern since 2006.
I'm sure your doc feels that there is nothing that can be done now. But the drug seems to be working for you, so I'd say just let it go now. What else can you do?
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Thanks Rabbit 🙂
BlueGirlRedState, thank you for information about preparing for pet, to be honest I am nervous if the pet shows more things than we know, sometimes I think ignorance is bliss!
Jackie, I used to take ibrance with a toast before bed time, I learned here that I should have taken it with a decent meal over 600 calories 300 from fat. not every day I can manage to eat that much 600 calories with ibrance though! This suggestion is based on 3 studies, not necessary that without food you cannot get benefit from ibrance, my opinion!Ladies, Suzan G Komen has a lot of events for mbc s including conferences. I attended the spring mbc conference, it was educational. They invited specialists from everywhere, and discussed many topics. Next is a conference for mbc: from LA to NY, virtually of course. The good thing about Komen is that they have local centers so you can find local events..
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Jack5ie - You are not alone. Neither my MO nor the specialty pharmacy said anything about food. I read the fine print somewhere during my first cycle. 🙄 And then I got very confused because I didn’t even know there were capsules and tablets so online I was reading conflicting information. Fortunately that was my only cycle on capsules. I’ve been on tablets ever since. I know there was a lot to absorb at the time but I’m also sure I didn’t zone it out. Neither I nor my husband heard my MO or her RN mention anything about food. 🙁
I’m also bummed to report that cycle 2 of 75 mg isn’t going as well as I would like. Not terrible but still too much blood toxicity. So far I’ve had 1 cycle of 125 (14 on/14 off) and 3 cycles of 100 (14 on/14 off) and now 2 full 21 day cycles of 75. I’m going again for blood on Tuesday and will probably make it over the 1000 ANC threshold but my other counts are suffering too - red cell and platelets. Neither my MO nor I see me tolerating 75 mg long term. After my PET scan in early October, I’m heading back to Naples. I’ll see what my MO at Moffitt says. Actually, I won’t see her. I’ll only see her APRN. Grrrr. But that’s another story. My MO up northwants to try Verzenio if my blood toxicity continues.
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Thanks ladies for your replies. You have made me feel better.
All of you are always in my thoughts and prayers.
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Hello friends! After my lymphoma diagnosis and 6mos of subsequent chemo, I am in remission x2! My only treatment for MBC since December has been letrozole. After countless appointments and second opinions to see if ibrance is compatible with my lymphoma maintenance treatment (rituximab), I have been cleared to start my ibrance again! Starting at 100mg and monitoring counts. I'm glad to be doing the ibrance dance with y'all again!
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Jackie, I just wanted to add quickly that I agree with the other ladies. My MO nor the specialty pharmacy told me to take the capsules with food. I always took it with food as more of remembering when and if I took it kinda thing. Never were adamant to take with food. My problem is remembering to take it the same time of day, bells, buzzers etc haven't been successful in reminding me. There are days I've gotten up 4 times once to do something including taking my pill and I've forgotten what it was I was going to do as soon as I got up. I'm convinced a head could pop out of my phone and say "Hey lady!! Take your pills!"...still always 1 to 3 hrs off ...hey at least its getting in there!
Hey wait a minute, that's the other difference! No gas stories to tell lately. Hardly a toot out the poot these days with these tablets. I'm officially bummed for lack of entertainment in this regard.
Hugs Jackie
Congrats Kel! Welcome back to the dance!
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Sounds like my experience is rare - at my first visit, my oncologist asked me what my most consistent meal of the day was. For me, that's breakfast, because lunch and dinner for us are usually on the fly, if at all (some days two meals, some days one in mid-afternoon). So she told me to take the Ibrance and letrozole together, at breakfast, and to include some calories from fat. I'm a big breakfast foods person (pancakes, waffles, eggs and toast, or cereal), so that was easy for me!
Okay, while I was typing that, my husband wandered in and I told him what I was writing. He reminded me that HE was the one who asked my doc how I should take the meds. He's right! In all fairness, he's a pharmacist, so that question came naturally to him...
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I have a bunch of other meds to take, as a lot of us do. Some are to be at bedtime, one take twice a day. So some go down at breakfast. When I started I/L, I took them in am. Still do, capsules. Everything seems ok on the labs.
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Ciaci - you mentioned that your hubby is a pharmacist. Does he have any thoughts on food and absorption? The pharmacist I asked did not understand my question and kept insisting that the active ingredient did not change. My oncologist did not know either, but speculated that maybe stomach acid was needed to dissolve the get capsule.
Sorry if I caused a stir with Ibrance capsules and food, always thought it had to do with nausea and did not think much about it until I finally read the insert that came with it. I take in AM and almost always have a big breakfast. Just wish I knew why and wonder if it applies to other meds / supplements. Seems like toxicity (blood counts) is the only metric, and I'm always wondering if it is working or not. CT scans - just how reliable are they if one radiologist measures/ interprets one way and another radiologist measures somewhere else. Maybe I should not think about it so much
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Bluegirl - Good advice. What’s done is done.
Ciaci and Radagast - you guys crack me up and I needed a laugh today. Some days you need a laugh more then others.
KelQ - it sounds like you’ve been through the wringer. I wish you success on your meds - Ibrance and others.
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Seems like Saturday was a posting day! Been feeling a bit sorry for myself last couple of days....sore joints and bowels misbehaving more than usual. I’m blaming the added blood thinner (Rivaroxaban) to my I/L. So it was quite heartening to hear so many of you having the same issues, sad though that is!
Like Ciaci I take all my meds at breakfast time as it’s most consistent for me. I also hope that I stay on the capsules for now. If I can get this DVT resolved I’m going to ask if the Riva dose can be lowered as far as poss for maintenance....they already know my system struggles to tolerate the full dose of anything and I’ve always been lowered except for the Letrozole ( and previously tamoxifen). Here’s hoping.
CT scan due now ( MO requested it ages ago but no appt through yet so have chased it up). Feeling pretty anxious about this one as getting to the stage where average peeps start to see progression, after 28 months and 24 cycles. Holding onto Jaycee’s 50 cycles!!!
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