Ibrance (Palbociclib)
Comments
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Candy: Will you have to take the zoladex injections if ER-? Hopefully you won't have to receive anymore shots..
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Candy, when I was first diagnosed, mine had CK7 and Gata3. I think it’s how they can tell it’s from breast cancer. I had a separate FISH report altogether, so maybe you’ll get a separate one.
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RK2020, thank you so much. I really appreciate it.
A pool sounds wonderful. I hope you get some relief from swimming and doing some gentle exercises.
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Candy, Is Her-2 equivocal the same as Her2-low? then, you could have Enhertu? maybe endocrine with neratinib?
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News for those whose breast cancer has switched to low HER2+ status:
(Actually it could be life-altering info for all of us as the research progresses.)
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Pat, YES!! Great point!!! That story says a good chunk of ER-positive MBC either starts out as Her2-low or converts to that during therapy. There is good news to be had there, ie possible treatments that are not chemo. Not sure how that is biopsied, but its one of the common contributors to endocrine-resistance, so if I-F stops working we need to start checking for that...
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Hi Everyone, checking in after my first cycle of Ibrance. Aside from fatigue and two mouth sores that came and went in one day, I felt like I tolerated the tablets well. A couple of you mentioned things tasting strange and I agree, food and water tasted off. I also developed some small red itchy bumps on my hands and feet, although they only seem to itch at night. I also have red bumps on my thighs. My MO’s office suggested keeping an eye on it to see if it gets worse and to try to see a dermatologist. I feel like all I do is set up and go to Drs appointments. Has anyone else here developed a rash related to the Ibrance? I can’t think of any other food or product changes that could be causing it.
I had bloodwork today to check numbers before starting my next cycle. My ANC is too low, 0.7. MO wants me to take the week off and do labs again next week.I guess I run low to begin with. My ANC was 3.7 before starting my first cycle, then 1.2 at 15 days. I also had my first dose of Pfizer vax the day before starting first cycle and second dose yesterday. I’m not sure if that is contributing in any way. All this to say, I hope my numbers come back up this week so I can continue. I asked if there was anything I could do or eat to get my numbers up but MO said I just need to give my body time to rebound. Anyone find anything that worked for you?
I also take my tablets in the evening, wondering if taking them in the morning or afternoon would have any impact?
I’ve been reading all of yours posts and appreciate all the insight and support this group provides. It really is nice to have a place to go where people understand what you are going through.
For those of you in limbo waiting for results or in a lot of pain, I hope you receive the answers and relief you need soon.0 -
SunshineDaydream, I, too, have just finished my first cycle of Ibrance. I didn’t fare as well as you. I had nausea the entire time, acid reflux, loss of appetite, deep fatigue, and lots of belching. I will have my bloodwork taken this coming Friday when I see my MO. I’m really not liking Ibrance right now. Dreading having to start it again this coming Sunday
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Sunshine and FGodmother, don't start worrying about your tolerance of Ibrance yet! On to Cycle 2.....You can do this!!
Unlike some of the other BC treatments where side effects are pretty cut and dried, Ibrance and the partners it brings along for the ride (hormonal, bone stuff) are less consistent. I remember terrible mouth sores for a period of time (Greek yogurt was my cure) and a wild itchy rash ankles-to-knees for a period with one red spot still persistently remaining on my foot.
Fatigue, nausea and indigestion have hung around for the long haul but I still feel like they're do-able. (Pepcid and Tums are my friends as are Phenergen and Zofran.) It'll be 5 years for me October 2 (MBC first in 2012) and I've taken some breaks. My doctor doesn't give 125 mg. so I've gone back and forth between 100 mg. and 75 mg. and notice some but not a dramatic difference between them. I've only had one cycle delayed a week due to low counts.
If this is your first time on an Aromatase Inhibitor (Femara, etc.) some of your side effects may be caused by that. I've been pleasantly surprised at the absence of a persistent ache in my arm now that I've switched to Faslodex. (I might add that I didn't remind a new nurse to warm the Faslodex this time and the injection was really uncomfortable. I won't do that again!) [Adding that Femara was especially difficult for me as a stand-alone in 2012-2013 and I quit treatment due to that.]
Cure-ious, I'm counting on you to follow that Her2 research! I've watched my MBC friend who is Her2+ use a constantly updated group of medicines for more than 20 years. I believe that can be true for us too! I found this interesting in the article - "There is currently no standardisation of how to determine levels of the HER2 biomarker in metastatic biopsies, which could be biopsied from skin, liver or bone and give different results."
Wishing all of you good days ahead!
Love from PatGMc
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FGodmother, I love your quote, "Even Miracles take a little time." There's so much truth in those words! That a drug like Ibrance made it through many years of trials and is available just when we need it - a miracle, indeed!
To the people here who participated in the trial, playing a huge role in that miracle, thank you!
Love from PatGMc
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I had a similar first cycle to you Sunshine and was ultimately dropped down right away to 100 where I have been ever since. The mouth sores rectified themselves at a lower dose and I almost never have them now.
Neutrophil counts, on the other hand I am starting to wonder if there is some seasonality, at least for me. I was coming in just above 1 from November, and then Jan, Feb, Mar came in low - around 0.8 at the end of my week off. MO had me hold a few extra days usually, but end of March was starting to talk reduction to 75. However, in April I did almost 1 at the start of my week off which was a surprise. The only thing I could think that was different was the sun was out here in April (its also finally at the right height to help generate vitamin D) and I sat in the garden most days at lunch for at least 10 minutes. It was a tough winter this year with a lot more cloud cover than I remember last year. I like to think it was the sun helping, although who knows!
With the vaccine - my first AZ was end of Jan and my second mid April so it didn't seem to have much impact on my counts.
Its a balancing act - you will eventually find the right dose and get in a rhythm!
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Sunshine & fgodmother, I also just completed my first cycle, due to start back today. I also got a small red bumpy rash on my right foot & have a loss/ distortion of taste. And some extra fatigue. Other than that seems ok. I'm due for labs this afternoon.
My best to all...
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Update---
Messaged MO nurse today to ask about FISH results. Did not show up in patient portal, but FISH was done and is Negative. So HER2 is negative. I will discuss the implications of the ER change from positive to negative at my MO appt on Monday. And still waiting for Tempus testing results.
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2 year anniversary on the 17th of this month. Anybody sit sometimes and think man, I've been through a lot of crap and I live to tell about it. Accept the crap, deal with the crap, and purge the crap...to make room for...more crap, that's my mantra now. Because crap piles await us ladies, small, medium and large as we navigate all this. I had a pretty good very painful scare a couple days ago and the result of that brought about the procurement and hunt for 2 new medical assistance upgrades. A rollator and a power lift recliner the second of which is a gift from MIL. Beloved joked I should add flair to my rollator. My first thought was a sign that said "Roll on 2". I referenced The Green Mile in my early stage days with my chemo sisters in regard to getting in the chair and getting the next infusion of AC. "Rabbit, chemotherapy shall now be passed through your body in accordance to breast cancer protocol until your about to puke, May God have mercy on your soul. Roll on 2.. That's kinda how I've tried to approach these couple years even if I've fumbled and faltered a lot. It feels strange to joke about things that were/are so hard, but hey, it beats crying sometimes and I've done several lifetimes worth of that these past 2 years. Thank you all for helping me get through 2 years of this mess, its been invaluable.
Roll on 2!0 -
IBRANCE & LETROZOL, are the 2 medications I'm being started on first for STAGE IV Metastatic breast cancer.
I'm new so not up on all the abbreviations yet but I'll get there I imagine. We have to wait on the IBRANCE until I'm off of primidone because it pretty much counteracts the IBRANCE. We don't want that❣❣
I pretty much leapfroged my way through breast cancer, March 2, I received my diagnosis of stage I, ok we can handle this. No problem, I got this one in the bag❣
Met my Oncology surgeon and decided on bilateral mastectomy because breast cancer runs in my family.
Ok, April 9th I go in & I'm going to have reconstruction afterwards so my plastic surgeon was there of course,, well my lymph nodes were having themselves a little convention or something.
My Oncology surgeon said the radioactive tracers never made it to the lymph nodes. There were several of them wrapped around the major vein in my arm, he told me "you never want to cut near that vein but I just couldn't leave them" well all 17 of the lymph nodes removed were cancerous,
The supposedly stage 1 got bumped to stage 3.
A bone scan and a CAT 🐈 scan was done & that showed massed on my 5th rib as well as some around the hardware I have in my lower spine.
Bumped up to stage IV....
I've had a couple pity parties one was because I have boobie flaps,,,LMAO no one could have foreseen the outcome and done anything differently. 🙃
So I gots BOOBIE FLAPS❣❣
Can't bump me any more I'm at the highest I can get,, I won the CANCER LOTTO❣
.🤣😂🤣😂🤣😂
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Thanks to those of you who have been reporting first Ibrance cycle results. I just finished my first cycle a week ago. I would be starting up tomorrow, but had VERY low neutrophil count on a CBC at the end of the cycle (.47). Onc said to retest this week (tomorrow) and wait for him to call me before I start again. I am on 125 mg. Hope to see numbers rebound (WBC was low too, as were hemoglobin and RBC), especially since pharmacy had already shipped second cycle of Ibrance and I can't return it. I can't imagine insurance would pay for a new cycle until my second cycle was up, but maybe it would be different with a dose change. Still, I'd rather he would wait a week and see if things get better. Otherwise SEs were bearable...no rashes that I noticed, nausea which occasionally advanced to vomiting, but with Zofran, Pepcid and eating snacks more often have been able to control that. fairly well. Some fatigue, more napping. I'm in the midst of trying to plan a trip to California in a couple of months (where I grew up, and one of DDs in college there and planning to remain much of the summer....illness has me homesick for ocean and hills), so rather anxious that all this resolves so I can go. Meanwhile just trying to finish the end of the academic year.....
Pattay 64, sorry to hear about new diagnosis....and that you are here, but it is a place with a lot of support and information. Welcome.
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Rabbit- Love it !!!! Roll on 2. Love that movie. And so true to compare it with all this crap of MBC.
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FGodmother - I’m sorry to hear you had such a hard time with side effects. I hope they aren’t persistent and get better with time. Also - perhaps some of PatGMc’s suggestions can help with the nausea. I take my tablets in the evening with dinner as I read a few other people did that to help with nausea, I’d not already, maybe change the timing of when you take you pill. Good luck with your labs later this week!
PatGMc - thank you for your words of encouragement. I know it’s early and there are options with dose reduction, I am really hoping this treatment works for me and for a very long time. I have two little girls, aged 3 and 5, and there is nothing I want more than to be here for them.
Sondra F - thanks for reminding me to get some sun. I’m sitting outside now as I type this out. I work from home and often go days sitting inside my apartment without getting out. Need to add walks and sunshine to my daily calendar!
Amanda6 - glad to hear you have tolerated the Ibrance well. Once I get an appointment with my derm, I will ask if the rash could be a side effect/reaction. Good luck with labs today!
Prairiesea - I’m sorry to hear about your low counts, I hope they come up for you too!
Rabbit - you have a great attitude, and I hope to also be able to roll with everything that keeps coming my way.
Pattay 64 - despite what has happened to you, you sound like you are still able to maintain a sense of humor, which I think is so great. I hope this first line works well for you.
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I wasn’t told to take Pepcid, so this is what I did instead, I ate dinner, then an hour later I took the Ibrance. I drank a ginger beer and ate a small stack of Ritz crackers right after taking the Ibrance. That helped somewhat. Then I would take an alka seltzer. If still feeling the acid, I would drink baking soda water. I was given a nausea drug, but it made me constipated, so stopped it. Barely was able to eat anything except plain white rice, mashed potatoes, plain pasta, bread and crackers. Even water made me feel sick. I sipped a bit of green apple flavored Gatorade to try to keep electrolytes balanced. Now I am on day three on the Ibrance break and feel like I could eat anything and am human again.
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You may still be able to return the 125. I’ve done that, they can give it to someone who is waiting for insurance authorization.
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Fgodmother - Boy you are sure having a rough go of it. I hope things get better. Even though your ibrance dance is quite elaborate, I think you are better off not taking Pepcid. Once you start taking Pepcid, you have to be weaned off or else you will experience a worse rebound effect. We already have enough issues. 😞
Also, although I didn’t experience reflux or nausea on Ibrance, when I started on 125, I had a plethora of other side effects. Due to low ANC I was dropped to 100 after 14 days and then 75. The side effects are so much less on the lower dose. I know that lowering your dose can be scary sounding but I would not hesitate to tell my MO the type and severity of SE you are experiencing. We take these drugs so that we can enjoy more time - quality time. You will not be able to sustain your routine long term. And your body needs more nutrients then it’s getting. Please speak with your MO. Hugs.
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New ladies - are you all taking the Ibrance in tablet form? I think most of us "veterans" started 125 when it was still in capsules, and the tablets, while you don't need to take them with food supposedly, have anecdotally had reports (at least here) of stronger side effects.
RK2020 is right - no reason to be putting up with side effects on blast month after month because with luck you will be on these drugs for a while. Stage IV is all about the marathon and not the sprint of early stage treatment and powering through a few crap days post chemo infusion. Your care goals should include something around best quality of life possible and making a few dosing adjustments should help!
FGodmother - you may want to see if you can work a bit of fat (like a piece of good cheese) in when you take your Ibrance as it helps the drug absorption. But I hear you on consuming those white easy carbs, I had a 12 hour indigestion bout last weekend and boy did white rice sound like the best idea ever!
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Candy, best of luck with MO visit. Is it a telehealth or in person visit?
KBL, I missed your sweet post as well, please no apologies needed, we are all in this together.Rabbit, happy 2nd cancerversary! like about crap comments, especially... make room for more crap... nobody understands us better than us!
New dancers, you have valuable advice from ladies. What I can add- based on my own experience- Greek yogurt and kefir, and salads (cucumber + lettuce) helped me for mouth sore, water and dried prune for constipation, and light work out can boost your energy, see “yoga for metastatic breast cancer” by Chicagoan. As Sondra said, taking sunshine is good for your energy and bones. Someone asked about terms/ abbreviations, you might want to see the thread “20 terms you should know”
about rashes, I had them on my back shoulders neck and ears, gradually got resolved but still have some
It is a roller coaster, some days I feel good some days not feel great, and I don’t know why! A nice social worker told me once, “it is okay to not be okay and it is not anybody’s business!”
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Snow-drop-- My MO visit on Monday is in person. We will discuss the biopsy results and the Tempus results. And I guess set up my next scan--- done March 22 and so due in June. I guess we want another scan to see what growth there has been since March and then start a new treatment then based on the biopsy results. That makes sense to me--- get new measurements and then start the new drug. Then rescan 3 months later to see if the new drug is working. But I hope the tumors have not exploded since March with all this waiting around and taking time to get these biopsy tests done. A marathon not a sprint, but makes me nervous.
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Sunshine daydream my ONC told me to take benadryl for the rash. It worked and it doesn't come every cycle. Actually the side effects can be different each cycle. Also ginger candy, ginger beer, helped me with my nausea and rice cakes.
Rabbit congrats on 2 years.
Candy I'd be scared too. You got this though, you're so organized and on top of your treatment that you will guide that conversation to get the best out of what is available.
Welcome new ladies. Please listen to Patgmc she really has been around and is very on top of treatments etc.
Many of us dropped to 100mg or lower with the same efficacy.
Take care all
Tanya
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Candy...I'm right with you. I still don't have a treatment plan either while waiting on biopsy results. I've been off meds (except Xgeva) since April 5th. I'm hoping to have answers by next week. I have been in so much pain since then anyway that I haven't really cared. I was getting occipital neuralgia type headaches, then excruciating arm pain. It all felt nerve related, but I don't even know what caused it. I'm thinking possibly the vaccine caused an inflammatory reaction, but I don't know. Finally, the last 2 days I am starting to feel myself again but I've been very down in the dumps lately. I hope the pain doesn't come back again. I hate this 'journey' we are all on.
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YES ! MIRACLES DO TAKE TIME....And mine has arrived !....13 years dealing with stage 4.....Aromasin for 10 years. .Now IBRANCE AND FASLODEX for last 3 years.....My last pet scan showed NOOO Cancer....as of right now!...SOOO! My ONG is going to cut my Ibrance to 21 days and take 2 weeks off, My Faslodex to every 5 weeks....I am thinking of going on Letrozole, as am sick of Faslodex shots...To many scar tissues. Would appreciate any input on Letrozole .I must add that in 13 years have not Drank Alcohol ,and very little sugar, exercise, And give all the glory to GOD!.....YES! AM SO BLESSED RIGHT NOW ,and want all of you to know, THERE IS HOPE.
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I am so excited for you, Ruthie! NED is all each of us hope for. I am taking Letrozole again, after not taking it for four years. I get some joint pain, but it seems to be manageable for me this time around. I hope it is easy on you, as well. I’m doing my off week of Ibrance and feeling amazing. Yet I know I have an infusion of Zometa Friday that will knock me back down, and then back on Ibrance Sunday, and all the fun for 21 days.
I am happy dancing for you, Ruthie. And am happy to celebrate your13 years of stage four with you. Party on!0 -
Aaww great news Ruthie. Re Letrozole, joint pain and stiffness is a thing, dry heat ( sauna or heat pad) definitely helps keep them moving more easily. Fatigue can kick in too but you’ll be used to that.
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Way to make our day, Ruthie!!
I can hear the dancers around the world celebrating with you!
Here's to NED for everyone!
[I found Arimidex much more tolerable than Letrozole. I took Turmeric along with it. Had discomfort but not as much.]
Love from PatGMc
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