Ibrance (Palbociclib)
Comments
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airlinegal I take 125mg I am sorry I never kept the older bottles.
Ciaci - Ibrance NDC Number 0069-0187-21
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hi lauren,
I can completely understand why you wouldn’t have to take an antibiotic at the end of every cycle.
I do take 1000mg of liposomal vitamin (Dr. Mercola brand) every day.
It wouldn’t hurt to be on this as a booster and there’s other positive effects that are “anti-cancer” about it too that are getting backed by scientific evidence.
I have a cold right now (started at end of cycle) but I haven’t yet had to take an antibiotic (knock on wood!). Ibrance can cause upper respiratory infections for some maybe it’s worse than others and your MO doesn’t want to take any chances with you on Ibrance?
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Daniel awesome video, very helpful to see/hear. Thank you very much for sharing 🌸🌸🌸🌸
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Annamaria, my advice is, do whatever you feel good doing. For me, that's going out, unafraid, and living my best life. My avatar pic is me, last year, in Las Vegas, riding an ATV in the desert. Husband and I walked up and down the strip, visiting practically every casino, restaurant, and shop! Was I thinking about germs? Sure, but I wasn't about to spend a week in Vegas wearing a hot mask. And, you know what? I was fine.
Since starting the Ibrance, I've been on that trip to Vegas, a trip to Fort Myers FL, two cruises, and countless shorter excursions. We go out to restaurants all the time, visit a local theme park, and I never worry about crowds. My mother-in-law has been in and out of hospitals and rehab centers (at 87, she's on her third bout of aspiration pneumonia in three months), and while I was first nervous about it, I wasn't going to let the Ibrance keep me from seeing her. I've been there every day, even when she had the flu. I take precautions, like wearing a gown and gloves in her room, but other than that - nothing. And I've been absolutely fine. I do admit to one heart-stopping ride in an elevator with a guy who sounded like he was coughing up a lung... when I got out, I practically bathed in hand sanitizer, LOL.
I take my Ibrance in the morning, with breakfast, because that's the only meal I can control, time-wise. Since husband and I retired, we never know where we'll be for meals! I drink lots of water during the day, and I've been fine. Side effects are much easier than the literature warns, for most of us, I think.
Wishing everyone an easy time!!
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Lauren...Since my neutrophils were down at my appointment on Friday, my onco encouraged a lot of Vitamin C. I started drinking Emergen-C, along with eating foods high in Vitamin C. I have to have bloodwork in a couple of weeks to check my numbers...hoping the increased Vitamin C brings up my numbers. I've been on 125 mg. of Ibrance for 11 months...will start month 12 on Tuesday and have labs two weeks later. We shall see if Vitamin C has anything to add to my numbers.
Ciaci...You are amazing. I so admire you living your best life. A good reminder to all of us.
Hope
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question for my Ibrance 💃🏿 dancers:
I have not been sleeping due to this cough keeping me up at night. My dad recommended taking NyQuil tonight just so I can get the sleep my body needs.
Are Ibrance and NyQuil okay together? I feel like I have a vague memory of taking NyQuil one time early on in my treatment and feeling so out of it the next day. But I am wondering if it would be different now that I am fully adjusted to all my meds?
Thanks 🙏🏾
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Ciaci and Annamarie, I can see both sides of your views on living with Ibrance.
I had the same fears as you, Annamarie. Fearful that even tho only a small percentage of women get fevers that lead to life threatening infections while taking Ibrance, who’s to say I won’t be one of them? After all, I was unlucky enough to get a diagnosis of metastatic bc. And I had a very good run of stability on Arimidex. I can’t help wonder, is it my time for luck to run out? I also have those times when fate just seems to have it in for me. You know, “Fate here to bust your bubble.” So I definitely am proceeding with caution while I get adjusted to Ibrance.
On the other hand, similar to you, Ciaci, I’ve really developed a determination to continue to move forward with living. It’s ingrained in me now. Ds was coming in for the weekend with his girlfriend who had a cold, and wondered if it might be better for her not to come in with him. But I said, both of you come in! And we just took precautions to keep a distance and then she tossed her bedsheets and pillowcases in the washer before she left. I never got sick. Went to a bowling birthday party with family and had fun. Went hiking yesterday with dh at a park then got groceries. Planning for lots of activities in the oncoming months now that the weather is looking up. As I said, I will proceed with caution, but yes, I will proceed!0 -
Philly, I use Delsym for cough alone. You can get the one with no decongestant and no other stuff. People use Nyquil for sleep but that is totally not its intended purpose (thus the company developed Zzzquel just for sleep.) If it is just the cough keeping you awake, you might try Delsym to be able to stop coughing. Added bonus: it tastes really good.
And if you look at the list of meds that interact with Ibrance, it is EVERYTHING.
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Hahhaa Jaycee! You are right about that! And thank you for the recommendation. It is a cough that keeps jarring me awake. I am thinking that today I MAY be past the worst of it!! Yay!! No morecoughing spazzes happening here :-)))
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If you've had the flu or a really bad cold do you stop your Ibrance cycle?
No fever here but feeling rotten. Will call oncologist to see what she advices but thought I would ask what others have experienced here. Ibrance would just exasperate the immune system further is my guess. I don't want to have to stop mid cycle again as I did this last month with a supposed cellulitis infection in my hip/glute. (It was not cellulitis as it never went away after antibiotics) But something Jen wrote a few weeks back made me wonder if it's a common thing others may have...
Jensgotthis: my right hip feels and is swollen and sore. My skin hurts. It feels nerve related almost. No redness. No rash. No heat. No fluid (ultra sounded) Just pain. I'm on Faslodex though so I thought that was the culprit but really who knows at this point. My leg feels double the size though it's only mild with edema. No one seems to know what's going on with me. Scanning end of May to monitor lung mets but will have that area looked at too. The only thing that seems to help is rest, occasionally heat and ice alternating. I notice it worsens the more active I am.
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Ashlyn, I also have gotten what I’ve assumed is nerve damage following two (out of 3 so far) faslodex shots. Mine are numbish and sharply painful in a shallow layer of the skin in patches that are about the size of oranges. Toprocin (foot version) is a little helpful but doesn’t make it go away. It’s not at the injection locations (obv). I’ve been wondering if this is because my nurses use the dorsogluteal method for injections and are more likely to hit nerves.
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Ashlyn..I had some hip problems. I take Xgeva shots and still on Letrosole. What I thought was the hip has now turned into a pinched nerve in the lower part of my back on both sides. Had an MRI and there was nothing in the hip. It was the back. My hip hurt like crazy for the longest time and after shots in the back this week..no more back or hip troubles. Will see how long the shots last.0
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Magic medicine for a cough - prescription Tessalon Perls, the highest dose. My onc nurse said she used to call it in not knowing there was a higher dose. Her patients did way better on it.
On stopping Ibrance when sick - I did stop when I had the flu and pneumonia. I stayed off for 7 weeks as I was in-the-bed sick for half that time.
Love from PatGMc
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Yes, yes, prescription Tessalon Perls for cough. I only went off Ibrance for 2 weeks when I got pneumonia, but usually my counts stay just high enough every month that I am still on 125mg after 3 years. My recommendation is to call your onc. He/she will tell you whether to stay on the meds or not. I was told to go to ER only if temperature goes above 100.4. Since I usually run below normal (97.6) that hasn't happened either.
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Thanks for the flu/stopping insight ladies! no fever so far thankfully. I'm just nervous about having to stop again. I've barely gotten two weeks worth in me since start of March. My TMs have risen slightly also. I'll talk to my MO.
Jennyunderthesun: you describe exactly what I feel in my hip. It MUST be from a nerve being hit after the injection. There is a large area of my hip/glute that I can't feel the skin at all. But then it hurts beneath the surface and on the surface in other spots. I too have been getting them dorsogluteual which I found out from my cancer clinic nurse is not their best practice. But locally where I get it I don't have an RN here that is familiar with ventrogluteal injections. I can't get it at my cancer clinic because it's not funded there and they only administer it if you're on a trial.
Airlinegal: glad your pain improved with shots. I would be surprised if this pain was coming from my spine. Was your skin painful? Hope the pain stays away!
IntoLight: it's a miracle to me that you and others can do 125mg and be on it that long! Amazing!
I am on 75mg and my ANC doesn't recover over 0.9 for 16-18 days after each cycle. I've never been able to do 3 weeks on and 1 week off. I often wonder if the lower dose and schedule is what is making my outcome so mixed each time I scan. Even on Faslodex now I am having mixed results of progression, stabilization and a few nodules that have shrunk. I now have a new lymph node behind my heart that was 1.4cm at Christmas and 1.8cm a month ago. I also know that I had an ESR1 mutation in 2% of my tumor cells back in the fall. I’m preparing for my third line in my head
In Canada we can't access Verzenio yet and I don't know if it would be worth it to try Ribociclib or not when Ibrance fails for me. Lynparza is on my radar but again accessing it may be tough. I find the advocating for treatments and coverage so exhausting. My group plan insurance will be changing soon too and I'm tired just thinking about having to try to get approved through my husband's plan. It is assumed that healthcare/medication is free in Canada and it's NOT. 😞 I don’t qualify for Ibrance through my cancer clinic either because it’s only approved if you’re on Letrozole. I don’t know what I would do if I didn’t have my group insurance through my old job. It frustrates me that on top of being concerned about our health we have to jump so many hoops just to be on the medication that could help us prolong our lives.
Ooops random Sunday rant from my sick bed. Hehe.0 -
Cavity and DivinMsM - Thanks for the advice- I am headed to see my family. I was so literal when reading the information that came with the Ibrance -scared myself.0 -
Jumping in for those whose counts won't allow for the 3 weeks on...I've been st 75 mg, doing two weeks on and two off for three years. it's worked so far and I have fewer SEs. My countsstill tank, but are just high enough that I can keep going.
It may not work for everyone, but when I suggested it to my Onc, she was willing to try.
Hope everyone can enjoy some sunshine this week!
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Hello everyone - I am 'chirping' in - I started Ibrance 125 February 2018 and in all that time there was only 1 cycle where my neutrophils allowed me to start the next cycle, it was usually 2 or 3 weeks between. My MO just switched me to 100 and I had cbc done today, and after 10 days on 100 mg my neutrophils are 1.8 so I hope that by the end of the next 11 days they are at 1.0!!
My ct and bone scans done April 10 show that I am still stable!! I wish this for all of us! Janice0 -
WOoOh interesting re cycle times ladies. I’m now on 75mg Ibrance after 125 and 100 was just too much for my counts. After 9 months onl once have I made 3 weeks on and 1 off, usually 2 off does it. We talked about 2 on and 2 off but my Onc is happy I’m coping on a 5 week schedule and so am I. SE’s manageable and been taking glucosamine for my joints and B Complex vitamin to help fatigue ...... not sure if it will!
Good to hear the wide variety schedules on this
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I love that we don't all have to dance at the same tempo to be Ibrance Dancers! (75, 100, 125, a week here, 2 weeks there...)! We don't even have to be taking Ibrance to dance this dance!
I'm so proud of everyone who stops in here. Your courage inspires me every single day!
Love from PatGMc
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https://erc.bioscientifica.com/view/journals/erc/26/1/ERC-18-0317.xml
The above links to an interesting review of CDK4,6 inhibitors and resistance. They note that some of the cancers that emerge after I-F treatment remain sensitive to CDK4,6 inhibition, including 1) Esr1 mutated cancers; 2) MutL-defective ER+ breast cancer cells, and indeed MutL could prove useful as a biomarker to identify patients especially suitable for CDK4/6 inhibitors; 3) cancers containing PI3K activating mutations are also highly sensitive to CDK4,6 inhibitors (see Fig. 2). Interestingly, the CDK4,6 inhibitors make PI3KCA mutant cancers more sensitive to PI3K inhibitor drugs, and conversely the PI3K drugs inhibit CDK4,6-resistant cancers, which explains the strength of the 3-way PI3K/mTOR-CDK4,6-AI combination currently being tested in several trials.
By contrast, loss of the Rb protein, especially in combination with low molecular weight cyclin E (LMWE), indicates probable resistance to CDK4,6 inhibition. Amplification of cyclin E1, E2 or CDK2, or high levels of p16INK4a (or p19INK4D) are other markers indicating resistance to Ibrance, whereas loss of p16INK4a expression is associated with exceptional responders.
Inhibitors of CDK7 (or CDK2) that are in development (an injectable drug is already available in clinical trial) have been shown to be very effective for treating CDK4,6 resistant cancers in lab studies. Oral CDK7 inhibitors are expected to enter clinical trials in early 2020.
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This is great info Cure-ious! I wonder how one would find out if they any of these markers that are probably associated with CDK4/6 resistance? If you had your tumor sequenced would those markers get looked at?
And off the CDK inhibitor topic entirely: Do you know of any trials or studies being done on Viral Therapy for ER+ BC?0 -
Remember when I posted that PAN had MBC money on April 10? I said that may only last for a few days. Well, it has already closed and reopened in that very short time. Open now. I really like working with PAN. My last two grants, I have totally handled online. NO PHONE CALLS. No forms. This is a very good thing.
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Hi Fellow Warriors,
I just found out after 2 cycles that Ibrance is not working. I really thought it was, I guess wishful thinking. I think Xeloda is up next. Anyone have experience with Xeloda they can share? I know there is a thread on that too.
Trying to stay positive but am very scared. I have a 10 year old and I don't want to go anywhere yet.
Thanks xo
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Hello my fellow dancers!
This post will be about me, and I apologize in advance. Tomorrow I go in for my first appointment since starting the IF dance. Easter is coming up and I am starting to freak out.
I am worried that this may be my last Easter with my little girls. I am sort of in a dark place. At times I feel like there is light . At other times, the darkness over powers me. Is the Ibrance truly working with the Faslodex? My shoulder muscle hurts and it radiates to my neck on my left side. has it spread to the bone in that short amount of time? I think it is related to stress, as I don't feel it until I feel myself getting stressed. I have also been seeing floaters. I went to my optometrist and she says she doesn't see anything or signs of cancer. I am thinking it is stress induced, as when I am doing something fun or my mind is not on "things" I don't see them. However, I am at increased anxiety that the bc has spread to my brain. I am one hot mess! My next scan isn't for months.My question to you all: how do you fight these mind games that play in your head? Where every little thing gets thought out and comes right back to mbc? (Assuming these thoughts play in your mind)
Trying to stay positive. I try to tell my husband, but I think it freaks him out more. So I internalize. Ugh! F-cancer. We need a mbc cure! Thank you for hearing my rant.
Cure-ious- thank you for the new study. Keep them coming! Should I be asking my MO to sequence my tumor? Seems like they ought to as a standard. Why waste my time on something that won't work or isn't target for my type of tumor.
Pat - my insurance pays for Ibrance. I just have a $35 co-pay. My faslodex on the other hand costs me $6000 before insurance! When they book my appointment, they charge my insurance the same amount as an infusion and I don't even sit down! I just drop my pants!
Hope everyone is doing well. As I end this post, I am feeling better already. Thanks everyone!
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Holly we all get the anxiety. Something about MBC wreaks havoc on the brain and induces what ifs and a bunch of scary scenarios. Many of the ladies here take anti anxiety meds, CBD THC oils and such, effexor Xanax etc. we’re not just fighting this disease we also have neighbors family members and strangers who tell us what we can take and do etc. They mean well but are often annoying. We try to keep a brave face and demeanor for our families. Sometimes it’s overwhelming.
Whatever works for you to calm your anxiety do it. Aromatherapy, hot shower, soak in the tub, music, walks, rides, dancing, acupuncture, massage...
Hope you sleep well tonight. And some of us also take a sleep aide too. That’s when the anxiety. visits me the most.
Tanya
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DianeEliz, I’m sorry to hear your Ibrance was stopped. Would you mind saying how you found out it wasn’t working? I’m on cycle 3 and don't have a scan until next month. I’ve had weird twinges now and then and keep hoping they’re nothing serious. You’ll find a lot of experiences from others on Xeloda, I’m sure. Good luck with your treatment!
Hollyli, The mind games are something else. I’m kind of new to all this and am still in denial of its seriousness, to some extent. I know the reality but I so want to give myself more time, even though I know we have no control over anything. It has helped me to think positive by reading posts here. The people here are very special. They are in the midst of MBC yet carry on with their lives and take the time to support each other and all of us newbies too. Were you recently diagnosed? This is a great place to find you’re not alone in dealing with this crummy disease.
(Have you ever done yoga, by chance? The meditation aspect may be helpful to you. I really want to go but have back issues and worry about aggravating them.)
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Tanya - thank you. I don't take anything as my anxiety is intermittent. It usually happens before an appointment. And I have absolutely no trouble sleeping. I do like to stretch - a little yoga. I have also been meditating which has helped a lot. It is nice to know you are not alone on this journey.
Rosie - yes I like to meditate. It is so calming and relaxing. And all the people here are so nice and positive. I just needed you all to reassure me that I can do this. It means more coming from those who are going through it. Others just don't get it. They try, but they really don't understand fully. I was stage 3c when originally dx in 2012. I had a one year old and a 3 year old. Now stage 4 dx in Feb 2019.
Sorry to have been a Debbie Downer.
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hello holly!
Yes you are speaking to the right crowd who completely understands what your going through mentally.
Aside from antidepressants, Valium (as needed), my psychologist that I see weekly or biweekly, regular massages and lots of exercise...
I have worked with my anxiety, grief, emotional and physical pain, depression and spin outs through a couple of ways:
1) listening to the dharma talks by two wonderful speakers, Tara Brach and Jonathan Foust. I listen to their podcasts and have listened to them all through the sleepless nights, to help rock me to sleep. Here's the link to their podcasts:
https://podcasts.apple.com/us/podcast/jonathan-foust/id455422434?i=1000427644674
And
https://podcasts.apple.com/us/podcast/tara-brach/id265264862?i=1000396840472
These folks just bring calmness into my mind and body - even if it's for one hour, or 10 minutes. It is relief for that period of time from our own minds. There's many different talks to listen to. They also offer meditations, but I prefer the dharma talks, which if you check them out, you'll see there are shorter and longer podcasts.
The second thing that helped me, and it's just totally random: a good friend and my business partner (who is an MD), told me this “it's okay to have the pity party. Go there. But set a timer for 10 minutes. And when that timer rings, do whatever you can to get you out of the pity party. Change the scene, move your body, call a trusted friend."
That really stuck with me and i somehow have, for the most part, kept my pity parties to shorter time frames...this may not agree with everyone but it helps to keep me out of the dark dark places, which are incredibly easy to visit. Some days I am there it seems like every 5 minutes and other days maybe a flash happens.
Big hugs!
Philly
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Rosie24- I found out Ibrance wasn't working through a pelvic CT. My WBC dropped after 2 cycles so I am on my 2nd week off Ibrance and just got the results that showed progression. They told me I was eligible for a clinical trial IF Ibrance worked at least 6 mos - sadly not eligible now. They also said Xeloda would likely be next. Just don't wanna go back to IV but we all do what we have to. I have found a lot of help with acupuncture, meditation, etc, was actually feeling BETTER so really was hopeful with Ibrance. I do feel twinges of abdominal pain that go away, but am really bad at judging if I am progressing or not. Had lymphoma 19 years ago and felt like death warmed over then, so weird to have progression when I feel well. Baffling.
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