Ibrance (Palbociclib)
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Sunflower Yes, I agree. Everyone can react differently. I guess she'll know soon when Ibrance gets out of her system.
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Moose, I've known people who had bile duct stents done successfully. Here's the info:
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Oh my goodness, no pomegranate?! I eat pomegranate about every other day, because ì thought that the antioxidants contained would be good for me. I does not say anything about pomegrante in the German PIL, just to avoid grapefruit. However, I did not have issues with severe SE yet, so my pomegranate uptake might not be so problematic.
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welcome Mooseontheloose. Please know that Xeloda is a good drug too. It is genetically engineered to get into liver cancer cells. I was on it for 22 months and it did a great job of knocking back my liver Mets. Clearly Ibrance isn’t what you need now. Hopefully your oncologists can find a treatment regime that works for you.
Jo
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Hi Gumdoctor.....nice to meet you. It would be better if it had been somewhere else but since you're here with us, enjoy the party! I take Lanzopram (not sure if that's what you call it in the US) to reduce the acid in my stomach and pop the odd QuickEze for the indigestion. As for fatigue, you do get used to being in a fog but I've found there are times when I just have to stop and have a nap and I feel a lot better for it.
Cure-ious....thanks darling, yes I knew that the neutropenia we get from Ibrance, although it mimics that with chemo, doesn't seem to give rise to the severe infections chemo does but just the same my oncologist isn't keen on having me travel as I'm on a trial and we're doing our best to help Pfizer persuade the Australian government to subsidise Ibrance so they want to avoid even the slightest risk of skewing the numbers, just in case. To be honest, I'm quite happy to oblige as I really don't have the energy to travel and my bone mets are too painful for plane or car travel. I'm not complaining about it, just grateful that I'm receiving Ibrance courtesy of Pfizer, unlike other Aus women who, until recently, had to travel overseas every three months to buy it. And we live in a First World country with state of the art medical care (I seem to remember writing that somewhere recently - I hope I'm not repeating myself)! It's now available here but at an extortionate price. I'm not usually a scaredy cat, exactly the opposite, but in this case I'm taking all precautions.
Moose...so sorry you're having such a bad time. I wish I could offer some help.
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Sassu and others-- pomegranate is one of the foods that is contraindicated with Ibrance...it can interfere with the metabolism of the medication and cause it to remain in your system longer than would be typical-- this would've the opposite effect than you are intending, since it would likely further suppress the maturation of blood cells (RBCs, WBCs and platelets)....
IF you are having persistent problems with the CDK6 action if Ibrance or Kisqali (the results is that these 2 medications suppress the maturation of immature blood cells) ask your onc about switching to Verzenio (abemaciclib)-- it has more CDK4 action and less CDK 6 action and so should impact the blood cells less seriously. It will, for most people, have a greater impact on the GI tract (often causes diarrhea) than those other 2 medications. But worth a try if dose reduction on Ibrance/Lisqali has already been tried and you are still having unacceptably low blood cell counts (or other intolerable/undesirable side effects).
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Hello everyone, just stopping by to give my input on getting some sleep which is so important for all of us. I've always had trouble sleeping but lately I think I've found something to help turn off my brain and get to sleep. I can be so tired and get in bed and my brain just seems to click on. I've been trying meditation to help me focus which is still a work in progress. However, one of the apps I've found has sleep stories, aka bedtime stories. I take my usual 50 mg of trazadone about an hour before bed and then get in bed and turn on a story using a wireless earpiece with my iPhone so it doesn't keep DH awake. Most of the time I fall asleep in 15-20 minutes which never used to happen.
I'm having trouble with my iPad right now so its hard to write more, but if you want the name of the app, send me a PM. Hope this helps you all. Just one more tool in the toolbox.
Love and prayers
Faith
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Unfortunately abemacicmib is not generally available outside the USA. It was only approved in the USA in the fall. Approval in other countries is much slower.
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Hi everyone - I'm a newbie here and took my first Ibrance tonight. I looked at the pill a long time before swallowing it - worried how much my life will change now. I'm trying to work a full time job and not sure I'll have the energy anymore after reading your posts on being fatigued. Have my first Zometa infusion on Tuesday. Have read both positive and negative counsel on taking Claritin the day before and after. Any counsel you can give me would so be appreciated. I'm trying to live with hope and not die with cancer. But some days I think about my mom. She didn't have cancer, but passed away from other reasons. I was her caregiver for the past ten years and watched her suffer toward the end. I don't want to do that to my kids with this cancer. Hope I can be strong like all of you
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Cloudnine, be sure of this, that you can do anything you have to do! I imagine you're on 125mg of Ibrance as most doctors give that in the beginning. If the fatigue is too much for you, you can always move to the lower dose. I'm sure you've read here how well many of us have done on this amazing drug. I started it on October 1, 2016. After 3 months my widespread bone mets were remarkably reduced. Now there is almost no uptake on PET/CT. All those bone mets appear as healed tissue and the one soft tissue spot near my sternum has only a 2.3. They question whether it is even cancer at all now. Knowing that you can stop your cancer in its tracks or turn it around will make you able to do this, Cloudnine. I will be here in Memphis praying for you and all the Ibrance Dancers here will grab your hand and pull you along. We are pioneers and so are you. That pill is in there changing you already!!
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Not sure if here is the place to post this, but I want to make sure everyone is following Barbara Bigelow's blog. Her short story: diagnosed in March 2015, put on Ibrance-Femara- it wasn't working (due to a botched biopsy) because the cancer had mutated from ER-positive to triple-negative- she then went on a trial with chemo and immunotherapy and had a port put in. The port got a minor infection, but because her immune system was hyper-activated, it quickly escalated to sepsis. In the hospital she nearly died, raging fever out of control, BP out of control, kidney dialysis, lung failure, really was touch and go. Of course the cancer cells would have gotten fried, too. She did survive, and now takes nothing for the cancer- just had a clear scan after 22 mos. Is it a cure?
https://barbigwire.com/2018/02/
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Question---
How do you know cancer has mutated from orginal status---mine originally ER+/PR+ , HER2 neg. Is this when/if scans show progression? Then do I ask MO for another biopsy to see if status changed? I don't understand how you determine status change vs meds not working and need to switch treatment. I am not there yet, and hope not for a long time. So much to learn about this disease.
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Cure-ious......thanks for sharing....so uplifting..needed it today0
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Hello, my Ibrance friends. I’ve been offline for a while. I found a nice distraction for the past few months and have been escaping the cancer thoughts. I had a couple of bad weeks in January (physically and mentally) and knew where to come for some comfort. It took a while, but now I’m all caught up on my reading here. Wow! A lot has happened in a short time.
Welcome to all of the new comers. I’m sad to hear that so many of us need this drug, but glad that we have a growing community. Since MO’s (and Pfizer) don’t all agree on dosing, SE’s, and timelines, I’m glad that there are more of us who can share our experiences so that we can at least learn from one another.
I’m on cycle #10 at 125mg. No breaks needed. That’s the good news. The fatigue is getting to me, though. With those bad weeks in January that I had, I was strongly considering an early retirement. Things have turned around, as they so often do with Ibrance. Retirement can wait - at least for now.
I am finally seeking a 2nd opinion at CTCA. (Last year’s insurance didn’t support it.) My current MO is not a fan of regular testing. I’ve never done tumor markers. He doesn’t trust them. And I haven’t had a PET since last April. I’ve never had a CT or bone scan. My MO’s theory: “We don’t need to look for cancer progression. Cancer will let us know when it progresses.” I’ve spent the last 10 months wrestling with that statement. Nobody enjoys the stress of blips in the numbers or the scanxiety. The denial is delightful. But I can’t help but wonder... shouldn’t we catch progression when it’s small? On the other hand, if something new shows up in a bone, or liver, would we really change the protocol anyway? If the protocol is the same, what’s the value in knowing about something small that will only cause stress? (sigh) Anyway... I’ve got my 2nd opinion appointment tomorrow. We’ll see where this takes me. I got a bunch of scans and blood work done this weekend that should tell us how things are going. At least I’ll know if Ibrance is keeping me stable.
Hope everyone has a good weekend.
Cheers
.
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Midwest, I am surely not among the more knowledgeable of us on this site. However, I would SURELY want to know as soon as possible if progression were occurring. Why let it get the jump on you, and perhaps become harder to control?!?
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Mica1....thank you for your valuable information. Even though I knew about it, you explained it succinctly and gave me a refresher course.
PatGMc.....I can't hear your story often enough. It's so inspiring to know that your cancer had been with you for so long and was so widespread yet Ibrance has been so successful for you!
Cloudnine....be very confident that Ibrance will change your life. For the better. From the time I started on it twelve months ago till now there has been a remarkable improvement in my health. From bed bound to freely mobile despite my extensive bone mets. Yes, there is fatigue but you can get used to it and it isn't for the entire cycle, it's only for a week or so that it's very noticeable to me now. I can't say I feel wonderful but I'm not dying now and fifteen months ago I was. That's what Ibrance will do for you.
Midwest...like JoynerL, I have to say I'm far from the most knowledgeable on this thread but I'd like to know how the "cancer will tell you when it progresses". That sounds very scary to me. My oncologist does my TMs every cycle but we don't place any significance on them because they're always high and bounce around between 450 and 520 every test but he does scan me every 3 months (I'm on a trial and have to have scans as protocol but I'm glad I do). I definitely want to know immediately if there's any progression. I think, though, there is a school of thought that, if you're on the right treatment and there is progression the treatment will do its job....not a school I'd like to be enrolled in! I can see the value in it but I would want to be sure it IS the right treatment.
Candy...again, I'm not a professional but I'm 100% sure you need to have a biopsy to find out whether your ER/PR/HER2 status has changed. Progression wouldn't reveal whether the status has changed, simply that the cancer is not being controlled for whatever reason.
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Re: Cancer morphing into something different: My first in 1994 was ER-PR- (no knowledge of HER2 then but we assume negative), the second in 2001 or 2 was ER+PR+HER2 positive, the metastasis in 2012 was ER+PR+ and HER2 negative and was the same in 2016 with bone metastasis. How's that for a whole big diverse cancer party?! Anything is possible!
I also think we get to decide how we want to do this life. I was NED after Taxol/Carboplatin in 2012, then took Femara until I couldn't take it any more (18-24 months?). The side effects zapped my quality of life. I opted out of treatment altogether and my oncologist and I agreed I wouldn't have scans unless I had symptoms. The crazy thing is that the symptoms that sent me in for the scan in 2016 ended up having nothing to do with the cancer. Bone mets changed my mind and agreed to Arimidex/Ibrance/XGeva.
I'm happy to say I've had a great cycle on the 75mg Ibrance...finished yesterday. No nausea, no hot flashes, very little heartburn. I'm praying (and expecting) that it's working as well as the 100mg. We shall see! Anyway, I'm making art like a madwoman and that feels great!
Much love to all of you as we begin another healing week here in Ibrance-Land! God has this!
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Hi Everyone.
Welcome to all new ladies! I have just finished round 4 of Ibrance. This one has really kicked my butt. I am tired all of the time and of course my hot flashes are back but I think it is because I have maxed out on my gabapentin. Plus I just had my second bone scan and also had a ct for my chest/abdomen area. I also found out I have a gallstone! So uh dunno how I feel on that. Other than that I have looked over the reports and they look good all my lesions are staying under control of the ibrance since this is 6 months out of radiation and been on four rounds of ibrance but I see my oncologist on Wed and will discuss with her about the results. I am also having issues with my left shoulder (I had issues with my right which is when they found the tumor) and now my index finger on my right hand. It has been hard lately. I also have had a swelling in my right armpit (I have had 5 lymph nodes removed four years ago from first diagnosis) so that is another thing I need to discuss.
I did retire from my job last Tuesday which was the best thing to do. My long term team through my job which is sub-contracted out through a 3rd party and since my short term team let me know when I was going over to them I thought okay it will be like my short term. Oh god no. So the last two months I was not getting paid (near the end of dec to all of Jan and this month) and I had to jump through a million hoops (lots of paperwork and me doing their job by calling and following through with my doctors making sure they got the paperwork) only for them to tell me that oh if I wasn't getting disability I would get 60% of my average pay but, now I would only get 23 bucks (including 23 bucks on each back paycheck) every two weeks. I decided last week to just finally put in my papers. My fiance agreed with me after we discussed it. My work understands completely and feel I do need to focus on me more. Which I do and luckily it has decreased my stress tremendously. So I now have time to focus on more things for myself and everything. I hope everyone has a lovely week I will try and get back on later this week to give an update to see how everything is going and also to discuss what my oncologist has said plus see if I will be on round 5.
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I started Ibrance in February 2016 (24 cycles?) and am still completely stable. I've had no acute side effects, just general lack of stamina - which could also be due to being in my 60ies and not exercising *regularly* -
and thinning hair. Pfizer has paid for my meds 100% since May 2017, but I'll have to re-apply for aid before this May. I'm now on Medicare (I wasn't when I first got the aid from them), but can't afford the $500+ monthly nut plus $3000+ in January like Junie B mentioned.I just keep happily kicking the can down the road!
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Goodmorning All,
Has anyone here experienced bone fractures (i.e, spinal) during their time taking Faslodex & Ibrance? I have one now and am waiting for an appt. with a neurosurgeon. In the meantime it's a back brace pain meds & steroids for me. Ouchie!!!
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Love it Kattysmith....just keep kicking that can down the road0
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i have had gallstones since my first CT in 2010. i have no symptoms and am getting quite ford of the gallstones! Don't panic unless you have symptoms.
Jo
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I need some advice.
I am on cycle 2 of Ibrance. The first cycle was 125mg and I had to stop after 15 days for an ANC at 900 which further dropped to 400 even after stopping med. Cycle 2 started after a 3 week break from med and then was started at 75mg.
Now after 15 days of 75mg my ANC is 1100 and the Dr. wants me to stop for a couple of days and recheck lab and come in for an office visit to discuss.
What are my options??? What are experiences of others who are reading this??
The lowest dose is 75mg, right?
How low did others' labs go and they still stayed on med? Can my body adjust to med if I stick it out?
I want to continue on Ibrance since it has good track record of preventing progression. If I have to quit, what med should I go to next? Which ones have equally good statistics? I know there are other meds out there and I am just beginning my journey thru this hell, but I feel like a failure for not being able to tolerate this med. I feeling like I am blowing thru my options. I was on Tamoxfen at first and was switched to Letrazole/Ibrance per MO recommendation.
Please help me sort thru my options so I can discuss with my MO on Wednesday.
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Dear People,
I have a question regarding Ibrance/palbociclib, so I'm adding to this thread. I hope I'm following proper protocol for this site. If not, please let me know.
My elderly (82 year old) mother has stage 4 breast cancer, and I have a question. She has an ulcerating/fungated tumor. There is some bleeding, but not a lot. She was taking letrozole for three months, which didn't seem to work, at least not enough. She has now been prescribed fulvestrant and Ibrance/palbociclib.
A medical oncologist told me that taking Ibrance/palbociclib is a bad idea if you have an ulcerating/fungated tumor, since it causes neutropenia, which could cause problems with the ulcer. So his recommendation is to get a masectomy to remove the ulcerating/fungated tumor.
I'd really not do this if not necessary. To the extent that my mother is able to follow what is going on, she doesn't want surgery either. She has dementia. Partly it's just more unpleasantness, plus we're concerned about complications/after effects from surgery. Also, if she is going to go on the medication, I would like as little delay
as possible.
However, the medical oncologist that initially prescribed it to me, as well as another surgical oncologist, said nothing about this issue. I wrote to them about it, but they haven't replied.It's also probably relevant that I'm in India. The medical community here is not known for either their competence/reliability or their concern about patients. Therefore I routinely get multiple opinions about major issues, as far as possible.
I'd really appreciate informed opinions about this issue.0 -
Faheem,
I started on Ibrance with a fungating/ulcerated tumor. Within a few months the tumor shrunk and the ulceration dried up, so I would recommend that your mom try Ibrance asap and see what happens. The surgery might be very stressful for her. I have never had surgery and I barely am aware that I have a tumor. Best wishes to the both of you.
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Greetings to all the newbies,
I'm amazed at how many newcomers. Sad and glad to meet you all. There is a lot of information on this thread and usually someone can match your exact diagnosis with theirs.
I am on my 9th cycle of Ibrance/Faslodex. I just switched from 125mg to 100mg due to fatigue and QOL concerns. I started out comparing the Ibrance/Faslodex to the chemo and radiation I had 13 years ago and felt really hopeful about the side effects. Eventually I realized that with radiation there is an end in sight with results and with Chemo there is an end in sight but with Ibrance/Faslodex you take it continuously forever until it stops working. My Onc told me that it didn't have a cumulative effect like chemo but it actually does. You get tired of being fatigued and exhausted all the time. If that's what your SE is.
The main objective is to get these tumors wiped out. Take it as the unique patient you are and when you feel that you need to change something have a discussion with your Onc. Also pay attention to your bloodwork, of course.
Awhile ago PatMgc posted some findings about reducing the mg of Ibrance and there is currently some research into the effectiveness of Ibrance even at 25mg!!! I'm sticking with 100mg for now and look forward to healing, new treatments and a cure.
Have a good evening,
Tanya
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Hi Candy 678, I am facing the same situation with low white count at 0.4 after first cycle of Ibrance. I am feeling fine though despite the low count. I have had a week off already and waiting for the count to go back up hopefully by this week then start again at a lower dosage. Hearing from long term veterans here in the forum, this may be quite common. MO says, our bodies should be able to adjust to it and we should just wait for now. I am not giving up hope that we can tolerate this med. I am sure others in this forum will give us some advice!
Thanks a million!
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Candy,
I had to take some longer breaks and after a few months of juggling with the schedule we landed in 75 mg 2 weeks in and 2 weeks off. I know they prefer a longer on to off ratio but the numbers didn't work for me I'm at 27 cycles of Ibrance...about 21 on this dose and schedule. The SEs have been very manageable. It seems to take many adjustments to find the sweet spot for a lot of us. Hope it all works out!
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Iwrite, you are my role model! If my scans look good after 6 months at 75mg, I plan to suggest to my oncologist that I do your two weeks on, two weeks off protocol. We have discussed how subjective things are with these new drugs and agree that we will adjust to achieve the greatest quality of life. I'm all for a longer life if that is to be but I'm more about enjoying the time I'm here! It would be fun to stay around for that 25mg dose though!
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JunieB, ouchie is right. I hope you're getting some pain relief. I haven't read anything about bone breaks on this protocol, but many women are on bone strengthening treatment like Zometa for bone mets. Hopefully someone can chime in here soon.
CloudNine, welcome to our band of sisters.
Midwest Laura, I echo what others said about preferring to stay ahead of progressing to the extent I can. I had a scare on an early scan with a very small spot on my liver. My MO said it was too small to cause any SE's. Follow up scan showed stable, so I'm going with fatty tissue. But what if it was cancer? I'd hate to think how far it would have to go to tell me it had arrived.
cchilders, congrats on your retirement. You sound at peace with your decision. I was self-employed and loved my job, but retiring and going on SSDI was the best thing for my health and family. Should something happen to me, my DH is eligible at age 60 to get something like 70% of my benefit.
Hope everyone finds moments of joy every day.
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