Ibrance (Palbociclib)
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I had to wait 14 days to get either my white cell count or my platelets to go over 1. Seven days didn’t do it. Here, in western Canada, if you have to wait 14 days they move you to 100 milligrams from 125. This protocol is set by the Cancer Clinic. Cycle 2 at 100 milligrams was a much better balance with quality of life. Still have a couple of major SEs but lost the mouth sores which were dreadful. I was advised by my doc thatmost women are on the 100 milligram regimen. My local oncologist said “only superstars remain on 125 milligrams.” I will pursue this discussion with her next week.
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Elderberry, everything you feel while going through this is okay. You are you and you can only do this the Elderberry way. (How confusing is that sentence?!) I remember those early days of diagnosis and how confused my feelings were.......up and down and all around. I personally like denial best. I thinks it's God's gift to rest our minds while we adjust to bad news. Reality is highly overrated!
If I could give you any advice (though I think a good psychologist is a great thing and I spent time with one years ago) it would be to search out stories of MBC survivors. Read them here. Read them anywhere you can. Ask your doctors to hook you up with some. The fact that even one person has a happy life during and/or after MBC lets you know you can do that too.
I'll be here pulling for you and praying for you, my new friend.
Love from PatGMcRee (25 year survivor of BC, 7 year survivor of MBC, happy and in denial lots of the time!)
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Ok, dancers, support me here. Patti's oncologist should be severely admonished for making that statement about "superstars." It is not a badge of courage to stay on 125 mg. Each person reacts differently to this (and any) drug and a doctor should not be making that judgement. Are the rest of us "less than" because we drop down in dose? Patti, when you continue your discussion with the MO, please ask what he/she meant by that. Get an answer. Let me know what they say. You've all seen me annoyed. Now, I am angry.
Sorry Patti, I should have welcomed you to the thread and told you how gad we are to have you. Lots of us have had to wait extra week(s) to continue on Ibrance and lots of us have dropped down in dose. We are all superstars.
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welcome Patti: I agree that women who aren't able to stay on 125 mg of Ibrance are no less "superstars". I've remained on 125 mg. for the past two years but not because of anything I myself have done.
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Welcome, Pattie! I have a note for your oncologist. I'm with Jaycee, mad as a wet hen!
Warning to the rest of you dancers....First time you've seen me angry.
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Dear Doctor,
It's important to remember that anyone who gets an MBC diagnosis is a superstar. Copy this and stick it on your computer screen.
In spite of the fact that we are often slapped up beside the head with words like "terminal", we get up in the morning and go on about our lives. We tolerate biopsies, chemo, surgery, radiation, pain, fatigue and other nasty side effects while taking care of families and homes and sometimes, jobs.
We show up to get stuck.
We show up to get scary scans.
We won't show up to be diminished by anyone saying we and our sister survivors are anything less than superstars!
Whether we swallow the largest dose of a medicine, the smallest dose or none at all, we deserve to be celebrated.
Doctor, on any given day our ability to hope and our sense of self might depend on your words.
Choose them wisely.
Love from PatGMc (who has never swallowed anything above 100mg of Ibrance and is a sparkly superstar with 30 months of it under my belt but so are my friends who take it for a few months and move on to something else!)
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Well ladies, I must be really crap cos I'm nowon 75mg and STILL not making the 3 week on 1 week off schedule. I need another week for bloods to recover. Only once have I made it. My onc says.. mehhh with a shrug. If it's working ( I'm currently Ned) we'll deal with it. Feel pretty ok most of the time too which helps. Next scan may/June... that I am def not looking forward to. And very well said Pat!
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I'm no scientist, but seems to me tolerance to a higher dose is something chemical? Honestly, I take no offense to what the oncologist said because to me it sounds kind of humorous in a nice way, sort of making light of a serious situation with no harm intended. I'm just very glad that the dosage can be adjusted to accommodate so many women. Like the words from a song, “we're all in this together."
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Divine, you are absolutely right. After I posted my diatribe, I thought, maybe she was joking. Not funny, in my opinion but acceptable...sort of.
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Don't bail on me now, Jaycee!
Some days you're in a benefit-of-the-doubt mood and some days you're just not!!
We'll all get over it because we know life is too short to take words too seriously....
but, seriously, Doctor?!
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VIPattie - where in Western Canada are you? I am in Central Alberta and on Ibrance 125 since January 2018 - I only had 1 cycle where I had 1 week off, then started the next cycle, usually 2 or even 3 weeks off. Now, finally, more than 1 year later, my MO lowered my dose to 100 mg, so I am anxious to see how I fare with it.
I wish all of us the best as we continue to look for the combinations that work for us!!
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In light of our recent conversation about the different manufacturers of letrozole, I thought you'd find this comment from a survivor on Facebook interesting:
"I am on the Letrozole- by Teva. I had let. by Breckinridge and it gave me the WORST bone pain so I switched back to Teva."
Love from PatGMc
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I post this in the hope that you are as encouraged as I am knowing that researchers are seeking what we need by many different avenues.
https://www.ucsf.edu/news/2019/04/413851/cancer-ki...
Love from PatGMc
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I gradually moved down from 125 mg to 75 mg due to fatigue. I notice a huge difference at 75 mg. My counts have been fine at all doses, my only ‘Ibrance vacations” have been when I have had a bad virus etc. i I am almost 4 years out on Ibrance, and after I was on it a few months, my tumor markers returned to normal and bx of my metastasis site showed all cancer dead. So I have been NED for well over 3 years. I wish everyone the same success! And I agree, anyone that goes through what we go through is a superstar. No matter what drug or what treatment. We all have our own path
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hi I’m on my 2nd round of Ibrance and I’ve been getting horrible headaches from the start of Ibrance or could the headaches b from the aromadex? Not sure why I’m getting headaches, I never had a headache in my whole life until now! Worried tho
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PatgMc, I, too, had horrible joint pain on the Breckenridge brand! I just figured it was my arthritis (combined with a horrible wet winter here!) and went about my days. Last week, when I switched back to Accord, I didn't even think about the pain, I was so glad to get rid of the gassiness, which happened almost immediately. Now, a week into the Accord brand Letrozole, I'm walking so much better already! My ankles feel better, my knees don't hurt going down stairs, I can do lunges again... I just called my pharmacist and told him to put a note in my file to NEVER give me the Breckenridge again. He said no problem, but it was funny because he had another patient who requested ONLY Breckenridge, because the others made her unable to get out of bed without pain! Our bodies are surely all very different, aren't they?
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Kimberly I had the headache too for a few months when I started treatments. Tylenol vaguely helped calm it down. Definitely report to your oncology team the side effects. It is their job to make this as comfortable as possible for you.
I went down from 125mg to 100mg of Ibrance because of side effects, one of them being headaches that were pretty debilitating. And I don't get headaches either! I don't know what else you are taking but if you are on lupron or eligard to shut down ovaries, that can also have a significant headache side effect - just an FYI. It does calm down eventually. But it is rough, I know! Hang in there and tell your team!
Thanks for the info on letrozole brands! So interesting!! I'm on day 3 of my 2 week letrozole vacation to see if the GI gas and awful joint pain calm down. I'm thinking I may ending up either switching brands (currently on the Accord brand) or maybe try a different AI possibly. So interesting how sensitive we are!
Pat sooooo happy your friend is OK!!! 🙏🏾
QUESTION: I can't tell if I'm suffering from a cold or some severe allergies here. I've never had allergies before and on Saturday I started with a tickle cough, now I am having an even more annoying tickle cough with a bit of phlegm, slightly runny nose and sinuses are getting congested. I started Claritin on Saturday (figures why not since I was getting my Xgeva on Monday) and am going to continue taking it. Any other suggestions? How can I know the difference? If our WBCs are low from Ibrance, then that includes our WBCs that fight off allergens too! Just trying to figure out best route to treat. I have full days of patients today-Saturday and want to be safe around them too!
Thanks!! Love,
Philly
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I can't say for Ibrance, but in some cases certain patients may simply more efficiently metabolize a drug to its active form than others. That means that for the same dosage, they effectively have more of the active drug in their bodies. Those patients need lower dosages of the drug in order to have the same effective dose as others.
Doing a little more reading on the subject, there is definitely human variability in the metabolism of Ibrance, aside from factors like renal and hepatic impairment, racial differences were seen, with Japanese patients achieving 35% higher plasma maximum concentration of the drug. Absorption was higher in some patients depending upon their diet and timing of dose with a meal, and no connection was observed in others. My point is that for most drugs, there isn't a one dose fits all solution, and its more than just an issue of tolerance of side effects.
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Ichangedmyname— does Claritin before xgeva help minimize side effects? I had this weird pain/tension in the front of my jaw after my first injection last month. One MO thought it might be calcium depletion, but my numbers came back normal...
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Jenny - what my MO says about it is the evidence is “currently anecdotal” regarding Xgeva and Claritin. But he said go for it! Maybe it’ll help! I think that some folks discovered by accident that it helps with certain infusions and so it is now being used all over the place. I can’t really tell if it made a difference. I was laid out pretty hard after the Lupron and Xgeva this past week and now I have this weird allergy/cold thing...so not sure what’s doing what, if anything at all! I’m going to continue taking Claritin for a week to see if it kicks in and does help my current cold/allergy symptoms. 🤞🏽0
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I've been on 125 mg. of I/L for 11 months. I sure don't consider myself a "super star"...just one of the lucky ones who can tolerate the dose. I would have taken the MO's comment in jest...trying to make me feel better and not to worry about being put on a lower dose, as there probably aren't a lot of "super stars" by his definition. But, I'm not easily offended.
Hope
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Thanks for your comment Husband. I have always needed a higher dose of medicine to work right in the past... e.g. I need double Novocaine, etc. And I do not do any drug often so it is not drug resistance, and I like your answer that I don't metabolize drugs well. I only take Tylenol and don't drink. That being said, I am doing fine on 125 mg of Ibrance and have for almost 3 years. I admire everyone on this site for taking up the battle no matter what dosage they are on. I don't feel "more super" than anyone--it is just what life hands us.
Philly, I had allergies last year that presented like you said. (I am allergic to pine trees, and yes, Christmas trees.) No cold pill touched it and it went away when I left the mountains. I was very miserable and thought it was a cold but I never coughed or had a fever. I am going back this summer so we shall see; therefore, I am loading up on the Claritin. My family lives there which is why I am going back.
Jenny, I don't know about taking Claritin before Xegeva, but I take it before my Zometa infusion and it helps.
Chris
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thanks for all the feedback. I’ll try that next time. It was certainly helpful with the Zarxio last weeken. Ichangedmyname, hope you’re feeling better soon.
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Hi all and welcome to all the newcomers. I hope you find comfort and companionship on this thread for years to come. Thanks for all the messages. I'm doing ok. Saw MO yesterday. The plan is 3 cycles of paclitaxel / gemzar and then scan. Which means one down and two to go. It's been a rough combo, especially regarding nausea, but knowing it's only 3 cycles helps. The Compazine discussion was really useful. I was trying Zofran, Compazine, and reglan. I'll skip the Compazine this round and see if it helps, because something was making me miserable. Take care, friends.
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Pat, there's so much great activity that I almost missed your research post!
I believe that's the same research lab that discovered last summer that alisertib and everolimus kicked butt when combined for use as a second line treatment, and had *much* less in the way of SEs because the dosages could be much lower. They are really driving some terrific findings. Thanks for posting!
xoxoxo
P.S. to Jaylea yes Compazine can be a killer. The Zofran alone will hopefully be much better for you!
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Jaylea, have they tried giving you Emend (injection along with chemo and pills before and after)? That really helped my nausea with Taxol/Carboplatin. I'm also a fan of Phenergen (sp?). It definitely makes me sleepy so I take just half a pill and only at night but it works well and I go most of the next day without nausea. I keep you in my prayers, friend.
Love from PatGMc
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PatgMc: I read and reread posts everyday. I look at date of DX, date of recent post - do the math. It does give me hope. Thank you for being another voice out there in the wilderness.
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I see a lot of the ladies here say their w/c count goes down. Seems that’s a s/e? Do you not get nulasta for that
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Hello Ladies - I am posting today hoping to get help from all of you that have been given Ibrance to go along with Arimdex.
I have read the medication Monograph discussing precautions and side effects of Ibrand and Ondansetron (nausea medication).
It looks like I am going to be continuley sick on this drug? Does the nausea drug work? Will I be flat out on my back?
Also, it says my hair might fall out - maybe then it says it will fall out. Did you ladies experience your hair falling out yes-no?
I would really appreciate any suggestion from this group as I am pretty nervous about what is going to happen to me.
Very scary Sid effect.
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AMP47, welcome to "Ibrance with a side of Arimidex"! I've been dancing with it for 30 months. My hair went because of something else so I started the IA journey close to bald.
Once upon a time in the past I took Femara and it didn't agree with me. (I've since learned that different manufacturers of the drug use additives that alter the side effects.) When I agreed to take Arimidex I added Turmeric and I haven't had the numerous aches and pains. I use MegaFood brand from Whole foods or Amazon.
Concerning nausea, I deal with that but most people I've met on Ibrance don't. No one ever said Zofran (Odansetron) was a no-no so I do take it when necessary, the lowest dose. Actually, Phenergen(sp?) is my anti-nausea drug of choice. I take half of the lowest dose a couple of times a week, always at night because it makes me pleasantly drowsy.
During some weeks on Ibrance I have indigestion. I only take Tums for it which also keeps my calcium levels up for the XGeva I take for the bones.
I've been less active this past year and hope to get myself back into exercise walking. Many people here say they do better when they exercise and I did too. Fatigue is definitely a thing with Ibrance and it can sometimes be hard not to give in to it. I've spent lots of time reading good books and making art. My advice would be to keep doing what you love and to search for things to laugh about. That has served me well and helps to keep the worries in a little box most of the time!
I pray that you will have amazing results from these drugs and that you dance well, my new friend! We look forward to hearing your good results.
Love from PatGMc
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amp47, I’m only on cycle 3 of Ibrance (with Letrozole) but want to tell you it’s been pretty easy for me. I had some lightheadedness and queasiness in the first weeks but they went away before long. I found snacks like nuts and peanut butter crackers helped the queasiness. That’s about it. I don’t have any scans until May but I am hopeful the drugs are working. Good luck to you. Also, from my reading, the side effects seem to blamed on the hormone blocker as much or more than the Ibrance
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