Ibrance (Palbociclib)
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FighterLove - I had the worst flu of my life in 2013 with a similar pattern and I couldn't swallow because the lymph nodes were so swollen under my ear and along my neck. I just sat on the couch and drooled because I couldn't sleep/swallow from the pain. It was awful and took three weeks to clear up, but not before it set up camp in my lungs and I had a hacking cough. This was pre-cancer, though, and the two doctor visits just said 'virus, have to wait it out, take fluids.' Pretty hard to do that when you can't swallow. I think I finally took enough ibuprofen to knock back the swelling to sleep, but yeah, it was grim. Best you went to the ER!
When they say take food with Ibrance - how much do they mean? I take it with breakfast as I am guaranteed to be home, but I don't really like to eat breakfast. Kinda excited about these new tablets - the freedom to sleep in on the weekends without panicking about having to get up and quick eat so I can take the damn pill will be amazing. I get my next set Thursday this week, but I suspect that will be too early.
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I take levothyroxine at 5:30 am. I eat at 6:30 am then take letrozole and Ibrance. Early mornings are the most calm and consistent time for me.
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FighterLove In the early weeks following my diagnosis I went from very bad to worse. It took a consult with a second MO to diagnose that I was allergic to the opioids they were pumping into me. I say this just in case that’s a piece of what’s happening with you. Hope you get relief soon!
Hugs,
Penny
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FighterLove, glad things are improving. Sounds scary!
I take Ibrance with dinner because breakfast is not consistent for me, and I remember in the beginning they recommended taking it with a fatty meal for better absorption. That is not going to happen at breakfast for me. The conversation here lately about not having to take it with food is confusing although yes, I understand the difference between a tablet instead of a capsule. I would rather take it with food to avoid any nausea.
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Thereishope4us, I have an alarm set on my phone that reminds me to take my pills every night at 5:00. If I didn’t have that, I would most definitely forget to take them.
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I have an alarm set as well. I really don't take mine with food, but I don't take it on an empty stomach either.
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I have a funky system set up for my pills...would love if it were easier but this is what I do:
1) letrozole and lexapro and naproxen in the morning with breakfast
2) Ibrance with dinner
3) supplements and naproxen before bed
it’s what works best for me right now.
i also only take my supplements Monday-Friday and give myself a supplement break on the weekends.
Love,
Philly
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Okay, looks like my instincts this month were correct. Had my blood pull yesterday and the results just showed that my neutrophils were at .79. Last month they were 1.17. Before that, they were higher (I've only been on Ibrance for 6 cycles).
Sent the MO a note via the portal. Waiting until mid afternoon to see if the MO calls me, but if not, I'll be calling up to Hopkins. Guessing this may mean either an extra week off of Ibrance or else a dose reduction, since I'm still at 125.
Thank God I didn't pick up my next set of pills yesterday or I might be stuck with my high deductible for what may be a useless dosage for me.
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I think Aprilgirl was also low her first cycle but they gave her a week off and kept her on 125?
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Is anyone experiencing low red blood cell count, or low hemoglobin on ibrance? I have contacted Pfizer, but I am not sure if they have anything to say on the subject of whether ibrance can lead to anemia or not.
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BevJen, We have seen how our various MOs do things differently, and here’s my experience in case it’s helpful to you. My MO said she was not at all concerned about my cycle 2 low anc and waiting an extra week. She said 2 weeks off is the routine for some of her patients. I’ve needed 2 weeks off for about half of my 12 cycles. Im still on 125. I’m wondering if my 580 count earlier this month (rebounded to 1340 after second week) will change that. Usually Ive been somewhat close, 580 was very low. I’m asked about my side effects, and how severe they are at every appt so I get the feeling my MO uses them as her basis for lowering dosage. (I’d like to know if lowering dosage affects counts over time.). Let us know how it goes for you
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Rosie,
Thanks so much for the information. I think part of this whole thing is that at some point since I went on Ibrance, I got a bit "off track" on when my blood pulls are taken. I literally finished up my 21st Ibrance pill on Monday night, and my blood pull was on Tuesday. So I think that is part of the problem -- no recovery time at all to see what's going on. I am also on Faslodex, and have to have those darn shots every 28 days, so we've been timing everything so that I only need to go to my center every four weeks. This may be the result of all of that over the six months that I've been taking Ibrance.
In any event, now I'm afraid to go outside the door because I know that I can pick up anything until my white blood cells improve. Not fun at all. Big sigh. And still I wait for some information from my MO.
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Husband, my Hgb before ibrance was 12.8, but dropped to 10.5-11.2 since I started Ibrance 11 months ago & I'm on 75mg.
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Bevjen at the risk of repeating myself, I’m on 75mg Ibrance having been dropped from 125 immediately then to 100 after a couple of cycles then 75. On3 weeks on and 2 weeks off with Letrozole and was Ned after 6 cycles. Now 20 odd cycles in and doing OK.
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Karen, did you see much drop in Hgb or RBC counts, or was it mainly ANC (neutrophils) and platelets?
Edit: From the FDA Monograph, it shows only 6 percent of the 444 patients in the clinical trial had grade 3 anemia (ie 6.5 to 7.9 g/dl Hg). So it looks like it relatively rare to the degree my wife has it.
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BenJev and Husband11
Thought I’d jump in and give the info that was posted by others especially some that did some research. First both RBCs and WBCs can decrease while on Ibrance. Second, if I remember correctly, Ibrance came out after it was tested and approved at 125mg and it was not studied for effectiveness at 100mg .
My Onc says he has seen 100mg to be just as effective in many of his patients so I too will be decreasing next month as my RBCs have been dropping steadily over the last 7 cycles. My WBC’s and ANC are beginning to do the same.
Hope this helps and that we all do well with the decreases
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BevJen, I had low neutrophils on 125 mg and was immediately dropped to 75 mg. I can say three out of four times my blood is drawn, my neutrophils have been below 1.0. Most of the time I drop to between .7 and .8. I wore a mask every time I went grocery shopping and finally just said screw it. I was with a lot of people over the holidays, even some who were sick. I wash my hands more often and try not to touch my face. Do you know all of my close relatives, including my husband and my daughter, have gotten sick in the last few months. Not me. I'm more diligent than they are, I guess. I would say try not to worry, just be diligent.
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Husband11, I don’t think I will be much help, but in October of 2018, my RBC, hemoglobin, and hematocrit dropped, not to the level of needing a transfusion, but I have never recovered. I’ve been anemic since then. I wasn’t diagnosed until May of 2019 and was put on Ibrance in June. My anemia has stayed pretty much the same the whole time. I have no idea why or what kind it is, but my doctor doesn’t seem too concerned. If it changed drastically, I’m sure he’d try to figure out why.
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Hi All, just started cycle 3. Cycle 1 I had low neutrophil counts at the end and did have to take an additional week off before starting cycle 2. They kept me at 125 mg and my neutrophils were fine cycle 2 (did decrease but not below 1.0). I definitely felt more tired first cycle but was also emotionally distraught with the dx, broke my wrist and my vocal cord paralysis (due to swollen superclavical lymph nodes pressing on the laryngyl nerve) had not improved much and honestly, really bothered me as tons of people were asking me why my "laryngitis" was still present and I am not comfortable sharing my medical dx with clients and work acquaintances. Cycle 2 of Ibrance ended while I was on vacation in Hawaii. Had my cast removed on 1/15, saw my oncologist for my monthly injection and appt on 1/16 and flew to Hawaii on 1/17. My husband and I were on vacation for 11 days - the longest I have ever had away from my kids (now 20 and 22) and from my work. I really made an effort to not check email often and tried to really take a break. It was wonderful! I slept a LOT, probably had a few too many mai tai's and we had a glorious time. My insurance is making me use a mail order company (express scripts) who is contracted with Accredo for Ibrance. After many calls to set it up it arrived on time which was a relief.
FighterLove: I had quite a few neck/ear/sinus issues starting in late July that my GP insisted was viral. Mine weren't exactly the same but still the area and persistent. I did go to the ER for the sinus headache and they did a head CT that was clear so they dx it as migraines (never had those). Had they done a neck CT, they would have noticed my recurrence in the superclavical lymph nodes and mediastinal nodes. I went back to re read your post but am not sure if you called your oncologist. I would want a neck CT with contrast. ENT Doctor scoped my larynx when Laryngitis added to my other symptoms and she ordered the Neck CT after scoping showed my left vocal cord paralyzed. Nothing was obvious by looking in my throat and the nodes are so deep they weren't notable when all the doctors checked my neck when you are sick. Nerve pressure from lymph nodes created a lot of symptoms in my case that were dismissed. Good to hear that you are feeling better after your ER visit!
Cycle 3 Ibrance I am trying in the morning with breakfast. I do set an alarm on my phone just to make sure I don't forget! First 2 cycles I took it at dinner time (still using the phone alarm!).
edited to add: My vocal cord/ voice quality is much improved after my vacation. Must be the mai tais:)
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I've been having problems the last few days with mad congestion, yo! Ugh - like not possible to breathe through my nose bad, and sinus facial pain. Im prone to sinus infections and had one last March, but I also see (from a past BevJen post) that this is normal side effect of Ibrance. Ive got Sinex (for desperate times) and Vaporub on hand but I just feel yuk - tired and nauseous which suggests a sinus infection, although the yellow discharge cleared up a few days ago (sorry everyone!). When I get an infection I tend to feel really jittery too, so I still think its partly side effects and partly something else. I guess this is better than the bone and muscle pain though?
Otherwise I felt really good on 100!Did my bloods yesterday and have to see MO today where we will be talking about this in addition to other things. Could just be a passing cold since partner has been sniffly for weeks and I was able to be out in public the last two weekends and could easily have picked something up.
Aprilgirl - I know what you mean about being asked about an externally manifesting symptom and not wanting to discuss your status. Im moving better and better, can clearly walk with both legs and don't have a cast, so why the crutches. And I have no good explanation other than stress fracture, which is true. But then people want to know how. I say long period of stress and high velocity twist (true) and how much longer I will be like this (hell if I know) and what do the doctors say (umm...). Even the old man on the bus yesterday asked what I did to myself to warrant crutches!
Worst are the questions about 'and how much longer is your treatment' or 'where are you at in your treatment?' as work wants to know for accommodation purposes. I mumble 'indefinite' and change the subject quickly but if anyone has a better line I am open to it!
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Woot - WBC was fine so I stay on 100. Feel like I passed a test! Thyroid function a-ok too.
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Good afternoon ladies. Well, I have my muffins baked and I’m ready to cut em
On my week off for cycle 3. MO appt on 5th before starting Cycle 4. I’ve been on 125mg thus far and hopefully will stay there. Very Very tired lately. Enough I’ve been able to nap a tiny bit. No complaints there. I still have pain throughout spine that hasn’t reduced, have new pain on left side near ribs and in sternum where known Mets are. Haven’t been scanned since beginning of Oct so it might be time to peek soon, will ask at my appt when we will scan. Ibrance is tolerable for me just hoping it’s working! You gotta fight, for your right, to IIIIIIIbrance!!! Take care ladies!!
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Staying on Ibrance 125 for now. MO believes that my wobble in blood counts (including ANC below 1) are attributable to having had some sort of virus at the end of last week. She wants me to start up as normal this coming Tuesday evening (I take my pills in the evening) so long as I feel okay with no repercussions from said virus. Apparently tumor markers are up a bit, but they haven't posted yet on the patient portal and she hasn't told me what "up a bit" means, but we are also going to scan before my February visit. I'm hoping that TM rise, whatever it is, in tumor markers is attributable to said virus as well, since those types of things historically have affected my tumor markers.
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BevJen,
I hope the virus you dealt with is the culprit in your TMs, especially since you’ve observed this before. The wobble in counts could also be due to your labs being done at various times in the 4 week cycle, as you mentioned. I doubt I’d ever be above 1 (or 1,000 as my numbers are given) without my week off. Good luck with your next scans! I’m in for pocket duty whenever it is. 😊
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Thanks, Rosie! I appreciate it.
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RRabbit: OMG Ibrance beastie boy ear worm, LOVE IT!
SondraF: I am so with you on how annoying and mistifying it is that so many people ask very pointed questions on medical stuff.
Adding a broken wrist (casted) to my "laryngitis" put many coworkers over the top in their questioning. I can only imagine crutches really attract the questions.
BevJen: Good luck on the scans!
Dentist appt today, first one since my new dx. The first ENT I saw in early Sept told me I had tmj (as a reason for the severe left side sinus headache) and my dentist made me a guard but didn't see signs of teeth grinding. So, I told him the real story and the meds I am on figuring he might need to know. The dentist was alarmed, but nice. HOWEVER he added before he walked out that as a breast cancer patient I should avoid milk products and alcohol as he has read they contribute to breast cancer. I wanted to KICK him. I have a genetic mutation (ATM) and don't really drink much(except on vacation!). Sorry I told him. I feel like sending him an email that in the future, don't give cancer patients, working with oncologists, cancer advice as you have no idea about their specific case.
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RRabbit: OMG Ibrance beastie boy ear worm, LOVE IT!
SondraF: I am so with you on how annoying and mystifying it is that so many people ask very pointed questions on medical stuff.
Adding a broken wrist (casted) to my "laryngitis" put many coworkers over the top in their questioning. I can only imagine crutches really attract the questions.
Dentist appt today, first one since my new dx. The first ENT I saw in early Sept told me I had tmj (as a reason for the severe left side sinus headache) and my dentist made me a guard but didn't see signs of teeth grinding. So, I told him the real story and the meds I am on figuring he might need to know. The dentist was alarmed, but nice. HOWEVER he added before he walked out that as a breast cancer patient I should avoid milk products and alcohol as he has read they contribute to breast cancer. I wanted to KICK him. I have a genetic mutation (ATM) and don't really drink much(except on vacation!). Sorry I told him. I feel like sending him an email that in the future...don't give cancer patients, working with oncologists, cancer advice as you have no idea about their specific case.
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aprilgirl,
It's amazing how ignorant the medical profession is about MBC. I've had several doctor s ask me when I'll be done with treatments.
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I'm on my 51st cycle of Ibrance (75 mg, 2 weeks on and 2 weeks off). I take it with dinner most of the time. The tiredness and brain fuzziness is regular and the hand and foot neuropahy is annoying. I think there's some hair thinning, too and I've had mouth sores at times. It's worse when I enjoy Franks Hot sauce!
Overall, this has been very doable and I'm grateful for the 4 plus years without progression. I know it won't last forever.
On another note...I stagger my Atorvastatin doses (every other day) when I'm taking the Ibrance. My feet hurt quite a bit more when I try to push through and take every Atorvastatin dose plus there can be issues combining these drugs.
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That is great to hear Iwrite. The atorvastatin might be assisting in holding the cancer at bay. At least that is what the COC protocol people believe.
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