Ibrance (Palbociclib)

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  • chicagoan
    chicagoan Member Posts: 1,063
    edited May 2017

    Sadiesservant-Sounds like you have a good doc-glad to hear your lung fluid is decreasing and that you can stay the course with this treatment so that silly lump will disappear soon!

  • fight4two
    fight4two Member Posts: 34
    edited May 2017

    I'm on my first cycle of Ibrance and unfortunately caught my kid's cold after 9 pills! After 14 pills, my neutrophils are at 700. My oncologist has advised me to stop taking Ibrance for this cycle and we will start again in a week or two when my counts rebound. I tried reading the Ibrance literature and it seems like the advice is to continue Ibrance for the remaining 7 days if your counts are between 500 and 1000. Should I push to continue or just be thankful my neutrophils have a chance to rebound while I'm fighting this cold

  • Casun19
    Casun19 Member Posts: 77
    edited May 2017

    hi just popping back in to follow up with my blood / liver results. I think Micmel said she was following. Happy birthday by the way 🎂😊. My AST/ALT was slightly high, then low, then shot up to 200(alt). One week has passed and my alt dropped to 100 and ast remains in normal range. My doc says, we sit and wait because this was a dramatic drop. But we are now thinking about gallbladder, and other meds impact. More blood to be drawn next week....

    Z- I saw many many many pages back you answered my question again about lymph nodes popping up on one scan and disappearing on another. Thank you for alway remembering what people ask about and giving such detailed thoughtful responses.

    Also, regarding that kaytruda article posted on the previous page, does anyone know about that microsatelite defect they talk about? This board always seems to have some sharp ladies. Was curious if it's a pathological test or something your doctor could tell from a scan.

  • zarovka
    zarovka Member Posts: 2,959
    edited May 2017

    The "Rule" is that if your absolute neutrophils drop below one on the day before you are supposed start Ibrance, you should delay until the rise above 1 (or 1000mm). At some point, if the situation persists, you should drop your dose. There was not a significant difference in outcomes between 125mg and 100mg in the trials. We all metabolize this thing different. If your neutrophils are diving, one likely cause is that you are a slow metabolizer of ibrance and the stuff is accumulating in your system. In that scenario, your effective dose is actually too high.

    I re-read the Ibrance dosing guidelines that comes in the package and they've changed! The package itself now says your neutrophils can go down to .5 (or 500mm)

    Whatever the insert says, doctors have been starting the Ibrance cycle even if the neutrophils drop to .5, absent other symptoms, for a long time. The low neutrophil count we get on Ibrance is different than the immunosuppression you get on other chemos, much less dangerous. Long explanation for that, but you are not much more likely to get sick (35% vs 55%).

    Some doctors don't follow the guidelines and personally I think it is a sign that they are dosing basing on their experience with chemo and a) they are not very familiar with the drug and b) they didn't bother to read the packaging. I would not dump an oncologist over this, but I would watch that carefully. The dosing guidelines are not hard to read or follow.

    >Z<

  • fight4two
    fight4two Member Posts: 34
    edited May 2017

    Thanks, Z! I'm having trouble understanding how people can start a cycle at 1 though. I started my first cycle at 3.8 and was down to 1.4 by day 11, and .7 by day 14. If I start my second cycle at 1.5ish I don't think I could even make it a week before my neutrophils would be below .5!! Does the die off of neutrophils slow down or plateau or something? Guess I'm picturing it as a constant rate. I'm getting so impatient to start killing off these cancer cells

  • Aliciastewart63
    Aliciastewart63 Member Posts: 8
    edited May 2017

    I am on my 4 th cycle of Ibrance and femera. How often should I be having my blood tested

  • midwest_laura
    midwest_laura Member Posts: 114
    edited May 2017

    Hello, Ibrance ladies.  I will start my first cycle of Ibrance on Sunday.  This is an expectedly early timeline.  I started Letrozole earlier this month based on my chemo-pause status.  I'm schedule for an oophorectomy in mid-July.  My MO and surgeon both wanted to wait until after the surgery to start the Ibrance in early August.  However, at my 2-month post-chemo checkup yesterday, my MO said that he is concerned about the size of the tumor and that it hasn't shrunk as expected.  The DD AC chemo reduced the size 30%, but the follow up DD Taxol did nothing.  And there hasn't been any progress since.  If anything, my MO is concerned that the beast has grown larger since the end of the AC.  So, on with the Ibrance and surgery risk be damned. 

    The change in plans was devastating.  I went into my appointment feeling great.  I was able to report that I have been feeling good on the Letrozole (just joint pain and hot flashes).  I've been getting some good exercise every day.  My diet has never been better.  I was actually bragging about how well I'm doing.  Then the breast exam.  (sigh)  The appointment ended with "we might have to start thinking about mastectomy."   I knew that this was always a possibility because the tumor is so close to the skin that there's a chance of ulcerating, but hearing those words took me to a dark place.  If Ibrance can't get this situation under control, then I need to get my head around the major surgery and reconstruction.  I don't know how to find the silver lining in this one. 

  • cive
    cive Member Posts: 265
    edited May 2017

    fight4two:  My white counts stabilized after the first dose.  Similarly to you they were 3 or 4 before Ibrance, but after the first dose they rose not to where they were but close to 2, but didn't drop as much, so I stay within the same range.  I got a two week vacation this cycle due to low white count although I'm still on 125 mg.  I think my MO is waiting for scans at the end of the month since my TMs have zoomed to figure out if we'll continue this or go to something else.

  • PatgMc
    PatgMc Member Posts: 1,312
    edited May 2017

    Dear Midwest-Laura, I'm going to start with the Silver Lining...My friends and I who have had bilateral mastectomies laugh as we picture ourselves in nursing homes at age 90 with our perky breasts while all the "lucky" ladies have theirs hanging to their knees! Laura, as hard as it seems to contemplate losing your breasts, you can do this to save your life. My plastic surgeon now does them so that you keep your own skin and nipples and the breasts look like they always did. Back in my day, it was a multi-step process with grafts and tattoos. We did that and you can do this! The Facing Our Risk of Cancer Empowered website (http://www.facingourrisk.org/understanding-brca-an... ) has a whole section on breast reconstruction that you might find helpful.

    I'm glad you are starting the Ibrance. Since your treatment will be daily pills, you can always take a week off before surgery if your counts are low. If you are like many of us, your tumor could almost immediately begin to shrink. I'm going to pray for that! Also, you might ask your oncologist about taking 100mg. Mine starts everyone on that dose. I've been on them for 9 cycles and my counts stay at or just below the normal range. My best to you!

    Pat

  • PatgMc
    PatgMc Member Posts: 1,312
    edited May 2017

    Alicia, some people here only go in every 3 months. My oncologist sees me each month but that may be because I'm getting regular XGeva shots anyway. But he does get a full blood profile each time.

  • PatgMc
    PatgMc Member Posts: 1,312
    edited May 2017

    Casun, I re-read the article and it looks like there's a separate test:

    "Tests for "mismatch repair" typically cost between $300 and $600, according to Johns Hopkins. Dr. Vogelstein said the cost is minor compared with other costs for cancer care." (That's for sure compared to Ibrance though it looks like Keytruda is even more expensive!)

    I sent the article to my oncologist so, hopefully, I'll find out when I see him on June 5th. I have scans next week and I just wanted to be prepared should anything "unpleasant" show up though I'm not expecting that.

    Z, I second what Casun said about your thoughtfulness!

  • intolight
    intolight Member Posts: 2,388
    edited May 2017

    Alicia, I see my MO every 12 weeks and have labs each month before picking up my Ibrance for the next cycle. (My insurance won't mail Ibrance since it is a chemo drug, and my MO has to order it each month instead of a standing order.) I started out with labs every 2 weeks, but I am stable so I now go 4. I get Zometa (for the bone mets) every 3 months and was just moved to 6 months instead of 3 for a PET scan. I have been on Ibrance 1 year with good results.

  • cure-ious
    cure-ious Member Posts: 2,898
    edited May 2017

    I was just reading the upcoming ASCO Abstract for Abemaciclib. This version of Ibrance may be more potent and work through a somewhat different mechanism than Ibrance. The Monarch2 phase 3 trial just concluded for Abemaciclib with Faslodex, and here are their findings:

    Background: Abemaciclib, an oral, selective inhibitor of CDK4 & 6, dosed on a continuous schedule, demonstrated clinical activity as monotherapy in patients (pts) with treatment refractory hormone receptor positive (HR+) metastatic breast cancer (MBC). The tolerability and activity of abemaciclib + fulvestrant (F) supported Phase 3 evaluation. Methods: MONARCH 2 is a double-blind Phase 3 trial of abemaciclib + F vs placebo (P) + F in women with HR+/HER2- advanced breast cancer. Women who progressed on (neo)adjuvant endocrine therapy (ET), ≤12 months from end of adjuvant ET, or on first line ET for MBC and who had not received chemotherapy for metastatic disease were eligible. Pts were randomized 2:1 to receive abemaciclib at 150 mg Q12H (or 200 mg prior to amendment) or P plus F (500 mg, per label) and stratified by metastatic site (visceral, bone only, or other) and resistance to prior ET (primary vs secondary). Pre/perimenopausal pts received a gonadotropin-releasing hormone agonist. The primary objective was investigator-assessed progression-free survival (PFS). Secondary endpoints included objective response rate (ORR) and other efficacy and safety endpoints. Assuming a hazard ratio (HR) of 0.703 in favor of abemaciclib + F, 378 events were needed for 90% power at one sided α=.025. Results: 669 pts were randomized to abemaciclib + F (N=446) and to P + F (N=223). 56% of pts had visceral disease, 72% had measurable disease, 25% had primary ET resistance, and 82% were postmenopausal. In the ITT population 379 PFS events were observed with a median PFS of 16.4 m for abemaciclib + F and 9.3 m for P + F (HR: 0.553; 95% CI: 0.449, 0.681, P<.0000001 by log-rank test). In pts with measurable disease, the ORR was 48.1% (3.5% complete response [CR]) for abemaciclib + F and 21.3% (0% CR) for P + F. The most frequent treatment emergent adverse events for abemaciclib + F vs P + F were diarrhea (86.4% vs 24.7%), neutropenia (46.0% vs 4.0%), nausea (45.1% vs 22.9%), and fatigue (39.9% vs 26.9%). Conclusions: Abemaciclib + fulvestrant was an effective treatment in patients with HR+/HER2- advanced breast cancer who progressed on endocrine therapy with significantly improved PFS and ORR. Clinical trial information: NCT02107703

  • zarovka
    zarovka Member Posts: 2,959
    edited May 2017

    Everything I have read says abemaciclib is better. Looking forward to switching to abemaciclib. Ribociclib doesn't look like it is worth the trouble. Pretty much the same drug as palbociclib.

    At a minimum, with three similar drugs availability will increase outside the US. For those of you stressing out for lack of access to a CDK 4/6 inhibitor, it's coming.

    Thank you Cure-ious.

    >Z<

  • midwest_laura
    midwest_laura Member Posts: 114
    edited May 2017

    Thank you for your response, Pat.  The website link is helpful supplement to all of the great information here.  I'm starting Ibrance at 125 mg.  Maybe my MO will switch me to the 100 mg temporarily.  But he seems to take "You're young and healthy.  You can handle it" approach.  Thus far he has been right, so I'll stick with his advice for now.

  • PatgMc
    PatgMc Member Posts: 1,312
    edited May 2017

    Thank you for the info, Cure-ious!

  • zarovka
    zarovka Member Posts: 2,959
    edited May 2017

    fight4two - there is a lot going on even with measuring neutrophils. there are people who run up a flight of stairs before their test to increase their absolute neutrophil count. apparently it works pretty reliably. illness can increase neutrophil count as well.

    it seems we can get by with very low neutrophil counts ... the "normal" range just means that, at a given lab this is where 95% of healthy people fall. it doesn't mean you have to be in that range to be healthy.

    finally, i also dropped way down ... and then kinda stayed just above 1000 at the end of my week off. so for me it was not linear.

    i'd go with how you feel. i dropped down to 100mg not because my neutrophils were low, but because of other side effects. my scalp was burning and I was getting weird rashes. nothing super serious, but it concerned me that it might be effecting things i did not know about adversely. that should not happen and i am big on maintaining overall wellbeing as much as possible.

    >Z<

  • JoynerL
    JoynerL Member Posts: 1,392
    edited May 2017

    I have just changed oncs. I wasn't comfortable that my original, who has a stellar reputation but perhaps was on overload, was paying close enough attention to my situation. Didn't suggest loading dose when starting Faslodex (I learned that that was recommended from the nurse who calls from the specialty pharmacy for palbociclib and from this site). Doesn't check blood regularly. Wasn't prepared to review my first scans when I went in for my review (wasn't aware that they had been done).

    New onc says to do blood work every 30 da before beginning next cycle of palbociclib. Doesn't believe in routinely scanning every 3 mo unless necessary: says doesn't like to use radiation unless deemed necessary. He said that my next (second set) of scans will be in 3-6 months, to be determined. He also had very interesting comments about the changes in best practice recommendations related to Tamoxifen: 5 years recommended at first, now 10, and he thinks it is likely to be changed, for those with good tolerance, to indefinite. I was on it for 11 years (1991-2002) and wish that I had stayed on it. He believes that the Tamoxifen is a strong reason why it took my BC 26 years to reappear in my bones. He also noted that Ibrance + Faslodex is the "gold standard" of current treatments for those who tolerate it and recommended by continuing on it. I've just started my 4th cycle.

    Cure-ious: Great information on abemaciclib. Thank you. Onc #1 had described ribociclib as "cousin" to palbociclib.

    PatgMc: Excellent and caring advice (as always) and with which I concur to Laura.

    Laura: The very best of luck to you with the decisions you face. We're with you.

    Alicia: My new onc says to do bloodwork every mo before starting next course of palbciclib. He also noted that he would have tested me weekly during my first month.

    Z: Endless thanks for your consistently thoughtful and educated responses to all. We all so value your input.

    Happy Memorial Day weekend, and hugs to and prayers for all!

  • cive
    cive Member Posts: 265
    edited May 2017

    My MO does cbcs every week, cbc, cmp and TMs once a month.  Actually it's not my MO since I go to a commercial lab that does them and sends them to him.

  • JFV
    JFV Member Posts: 341
    edited May 2017

    Hi ! Just started Ibrance 125mg this past Monday. Yesterday I realized I have a UTI. I toddled of to my GP and am taking 500mgs of Cipro for the UTI. I just got a packet of new patient info about Ibrance and there is a warning about calling your doctor if you think you have an infection. This feels like a dumb question. But, should I call my Oncs service this weekend ? I fear I'll be sent to the ER since its a holiday weekend. I feel a bit better than I did yesterday. Any suggestions?

  • micmel
    micmel Member Posts: 10,057
    edited May 2017

    JFV~as long as you're on medicine, I don't think they would make you go to the hospital unless you had a fever. If you're feeling better and can rest comfortably with no further irritation and the medicine seems to be working for you, I think you would be ok. But keep track of your pain and temperature, they always tell me to call if my temp gets to be 100.3. That way anything can be caught early. But if you're feeling well and aren't in obvious discomfort, watch yourself day by day. If you see a rise in temp or you're uncomfortable, then you should call, just to be on the safe side. I'm sorry you're dealing with things like this. I believe I have been borderline a few times with one. Take care of yourself and drink a lot of water to filter out those toxins!!! Feel better soon. ~M~

  • MJHJAN1014
    MJHJAN1014 Member Posts: 622
    edited May 2017

    JFV, If you are already treated for the UTI, it is probably OK not to call MO. If you do not start to feel better in 48 hrs. or so, I would call. Will MO's office automatically get your records from your GP? You can have them sent so they have documentation of the infection.

    Best, MJH

  • zarovka
    zarovka Member Posts: 2,959
    edited May 2017

    same thing happened to me. I took cipro along with Pablo and everything came out fine. Cipro is strong. Just make sure you test again for UTI before you stop taking it ... don't want to let some monster infection develop.

    And load up on probiotucs

  • JFV
    JFV Member Posts: 341
    edited May 2017

    Thank you so much ladies. I planned on calling the Onc on Tuesday before I get my blood work done because for the infection. Thanks to your advice I'll ask my GPs office to send the info to my Onc. Never thought aboIt being retested. I'll keep my eye on my symptoms and keep chugging the water. Enjoy your we

  • zarovka
    zarovka Member Posts: 2,959
    edited May 2017

    and, yeah, water. get in some water with electrolytes so you don't dehydrate.

    hang in there.

    >Z<

  • LynnFish
    LynnFish Member Posts: 9
    edited May 2017

    Hello Everyone....I don't post very often, but I am in NYC (live in Dallas) for doc appointments, and have had quite good news re: mets...After a significant spread 6 months post-Ibrance, most tumors (bone only at this point) are sclerotic (non-active) and the few that are active have decreased FDG uptake rate to the point where the highest rate is 2.0 (indolent). I've been on Ibrance for 26 months, remaining at the full dose of 125mg. A few times my WBC/neutrophils went very low, and my doc (in Dallas) thought about reducing my dosage, but I said "Wait! Give me a month to get them up!" (with no actual plan in mind, btw) My counts would come up, at least long enough to remain on the 125. Then they'd go down...rinse, repeat. I have felt very strongly that my priority is to remain on full dose, and it has worked out great. In my view, the important thing is to fight the cancer, and if you get a cold or something in that process, so be it. Inconsequential. Both of my docs (NY and Dallas) are thrilled by my response, but I know that there were several occasions on which my treatment could have changed. But I pushed back, and am glad that I did. By the way, I'm vegan, as of 18 months ago...not sure if this is making a difference (who knows, but who cares, because I just feel better day by day, regardless). In my view, Ibrance -- full dose -- has bought me almost two years of good living. Best wishes to all...Lynn

  • intolight
    intolight Member Posts: 2,388
    edited May 2017

    LynnFish, thanks for your post. I have been on 125 Ibrance for 1 year now also with good results. My mets to my bones and liver are what my onc calls "resolved". I have no reason or thought to change either with these results. Today I am tired and my stomach is a bit upset, but I can play with my granddaughter and go to the grocery store. I am thankful for the year I have had and look forward to more. One day at a time!

  • PatgMc
    PatgMc Member Posts: 1,312
    edited May 2017

    Lynnfish and IntoLight,

    I'm so glad I popped in tonight to read your hopeful stories! I have scans on Tuesday and, of course, find my mind wandering into "what-will-I-do-next territory". I had a remarkable response to Ibrance after 3 cycles and hope to do even better after these 6 additional cycles but whatever happens, I am always encouraged and so happy to see people like you living well!

    Thank you so much for going to the trouble of sharing. God bless you and all the others who keep us uplifted.

    Pat

  • LynnFish
    LynnFish Member Posts: 9
    edited May 2017

    Hello Fight24...My advice: Get as much Ibrance into your system as you can. Infections, etc., might come with the territory...could be related, could not be. Stress, too, reduces immunity, so I wouldn't necessarily look to the Ibrance as the cause of an issues. FIG!HT THE CANCER. Deal with the rest. If I could take 250 mg. of Ibrance, 28 days a month, I would. In fact I've suggested this to my docs! :) "If 21 days is good, isn't 22, or 23, or 28 days better?". The protocols are based on averages, like one size fits all, but I would suggest that you aim to be way better than average. In fact (confession), I've taken an extra dose or two, when I knew insurance wouldn't notice! :) All working out wonderfully. Stay strong, and fight hard! :) All best! Lynn

  • Grannax2
    Grannax2 Member Posts: 2,387
    edited May 2017

    LynnFish that's a very encouraging story. So, your liver mets have resolved? I've been on Ibrance /femara since January 5th, 5 months, for mets to lung, liver and chest. I've just had my second y90 treatment. I live in the Dallas area, too.

    I have not had any big problems with 125 of ibrance, either. My first scan in March showed mixed results. That's why we did y90. The liver didn't respond much. My next scan is in July.

    I have not met anyone living in Dallas on this board, you're the first.