Ibrance (Palbociclib)

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Comments

  • pedsnurse
    pedsnurse Member Posts: 10
    edited July 2017

    PatgMc...tell me about the Tumeric you are taking

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

    Melmcbee, good luck with your restarting! I pray that your mouth will stay clear this time.

    Sadie, I started Ibrance and Faslodex in Feb/March of this year and am finishing my 5th cycle today. My first set of scans showed neither progression nor regression, but they did show "increased activity" in my bone mets, which are extensive in ribs, sternum, and spine. The MO and radiologist both noted that this could be healing and that I shouldn't be alarmed by this finding. Is it possible that this is what your MO was seeing? I expect to have 6 mo scans in August sometime and am praying to see healing as well as no progression.

  • sadiesservant
    sadiesservant Member Posts: 1,875
    edited July 2017

    Hi Joyner,

    How did they pick up increased activity? Through a bone scan? This was a CT so I would think they would be referring to size and/or number of lesions but need to get a copy of the report to be sure.

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

    I'm going to private message you, Sadie.

  • Dianarose
    Dianarose Member Posts: 1,951
    edited July 2017

    The 18 year old now doesn't feel well and has diarrhea 😖. Whatever is going around is terrible. Seems to last about a week. Hoping to eat at some point today but right now can't even look at food.

  • micmel
    micmel Member Posts: 10,039
    edited July 2017

    Diana~ Sorry to hear everyone's not feeling well. This is a crappie week. I hope you all feel better really soon! You've been through a lot this week. You clearly deserve a break! Hugs! ~M~

    Usually, on these weeks I get more energy and able to do more things, but I am starting to think the longer I am on this ibrance or even the dreaded hormonal. I get more and more fatigued. Each month. I am useless! Useless!!! It's very upsetting, only so much sleep or resting can Be done, before you start going stir crazy! I want my old summers back at the pool where my son would be lifeguarding and life was a tad bit easier. Hoping all are having a better day! ~M~

  • airlinegal
    airlinegal Member Posts: 252
    edited July 2017
    Having a thoracentesis(?) tomorrow to draw fluid off my lung. Wish me luck, please.
  • JoynerL
    JoynerL Member Posts: 1,392
    edited July 2017

    Airlinegal, we'll say a collective prayer. Good luck!!

  • micmel
    micmel Member Posts: 10,039
    edited July 2017

    Airline~ gentle hugs and a huge good luck. Think of us all packed in the room with you telling the doctors what to do! We're all so bossy with our treatments! 💜Color of hope! ~M~

  • sadiesservant
    sadiesservant Member Posts: 1,875
    edited July 2017

    Sending positive thoughts Airlinegal. I've also had a thoracentesis and it was not too bad. You will likely cough a bit and your lung will be irritated for a day or so as it reinflates. Hope it all goes smoothly.

  • mimistewart
    mimistewart Member Posts: 19
    edited July 2017

    Hi there pednurse, I'm on my sixth round of ibrance and letrozole.I have had a whole body bone scan and a ct since starting and im coming up on another ct scan very soon i suppose. I have no side effects from my meds and am confident they will show progress once again through my ct scan.i was diagnosed with Metastatic breast cancer first and have had no surgery and the tumor in my breast has gone back to whence it came........along with my lymp nodes and other mets have shrunk....I'm just concerned how long with this combo work......seems like alot of people have been on a while and are doing great



  • KC1010
    KC1010 Member Posts: 69
    edited July 2017

    Hi, Everyone - I've been a voyeur on this page for a few months, and have learned so much from all of you. I have been praying and rooting for everyone from behind the scenes.

    Well, I'm now hoping for some advice. I was dx'd with MBC this past January with very small lesions on my sternum, pelvic bone, T4, and a couple small in my liver (initial BC dx was only 2 years prior). Started on Ibrance/Femera/Xgeva, and first scans in April showed no progression--yay! My tumor markers were normal up until April, now they have been slowly/steadily rising for the past 4 months, today in the 90's. Had Bone and CT scan Monday. Results are mixed--no progression in bones, but small growth in the 2 existing liver mets, and one new small met. MO wants to switch me to Gemzar, but I'm considering giving the Ibrance combo a couple more months. My doc would support this, but is not optimistic, given the steady increase inTM's 4 months in a row. Any thoughts or advice on this?

    As with all of us, I want a good quality of life for as long as possible. We have a 5 yr old dd, and I plan on seeing her start a family of her own some day!!

    #IHATECANCER


  • auroaya
    auroaya Member Posts: 784
    edited July 2017

    KC welcome to the thread. I too read every day but only post when I think I have something to contribute. Like now. I think you would be wise to give Ibrance more time as even in the initial trials they saw that the Ibrance took sometimes 4 or 5 months sometimes even a year to give good results. Your doctor can add another drug like Faslodex and that way you both would be happy. Good luck!

    Aurora

  • sadiesservant
    sadiesservant Member Posts: 1,875
    edited July 2017

    Have any of you had problem with your hemoglobin on Ibrance? Just received the results of today's blood draw and the hemoglobin has dropped again to 9.9 which is the top end of moderate anemia. My MO did not seem concerned yesterday (based on last week's blood work) but it just keeps dropping....

  • faith-840
    faith-840 Member Posts: 926
    edited July 2017

    Sadiesservant, I saw your post and just checked mine, it's 10.3 at last blood draw in June, which is a bit higher than yours but has never been very close to 12 which is what my center shows as the low end of normal. My onc has never seemed concerned about it.

    PatG, we may have had the discussion on planar fasciitis but my brain is no better than yours. I added turmeric several months ago. Not sure if it made any difference but I guess it can't hurt since it's an anti-inflammatory. I use the "Curamed" brand which is supposed to be very good and highly absorbable. After my visit to the back doc today, I don't know if a different AI will help but I'm certainly going to ask when I see him next week.

    Micmel, I think we are all different but for me I remember thinking just a few months ago ( I'm just finished with rd.#19 today). that I no longer notice that I feel better on my off week but everything has just leveled off as far as fatigue and side effects. I guess this is the new normal unfortunately, or fortunately depending on your view point, I guess it could be worse. There are certainly days when I think I don't want to do this anymore but on other days I think this is not so bad and could be much worse. With all that being said, I'm certainly in a different stage of life than most of you here, my kids are grown and I have the luxury of taking easy if I need to. Not sure how I would feel if I were in my 50's or God forbid even younger.. There's no getting around it, having CANCER SUCKS, # I HATE CANCER

    Sending warm gentle hugs and lots of prayers to everyone.


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

    This is an article about Prilosec. It could explain some of the side effects people here are having.

    http://nativestuff.us/2017/07/maximum-spread-omepr...

    I've found that some of my most annoying physical problems were caused by over-the-counter drugs/vitamins. Magnesium, Prilosec and Calcium pills were the major culprits. I'm getting calcium from TUMs and my counts are actually higher than with the "horse pills".

    Faith, I wonder if my Bragg's Apple Cider Vinegar could also be helping me avoid the discomfort. I'm so afraid I'll wake up one day and have that terrible foot pain again. I feel so bad for all of you who suffer with it.

  • JFV
    JFV Member Posts: 341
    edited July 2017

    sandieservant, I became quite anemic my first try with Ibrance. I got as low as 7.5 and had two blood transfusions. I took a month off from Ibrance and finally got up to 9.5. I will try Ibrance at 100 mgs starting next week. We'll see how that goes.

  • cive
    cive Member Posts: 265
    edited July 2017

    Sadie, I thought maybe that your catheter might be plugged.  On both sides, I had to get unclogged a couple of times before we could take the catheter out.  My pulmonologist used TPA (tissue type plasminogen activator) and injected it into the catheter with a special valve that changes the catheter valve so it can go two ways.  The good news is that the plugging happened at the end shortly before I got the catheter removed.  It took until cycle 5 before we started seeing my tumor markers going down rather than up on ibrance.

    airlinegal, for me the thoracentesis was fairly easy.  I did have the coughing that hurts a bit when my lung re-inflated as Sadie mentioned, but it only lasted for 5 mins or so.

    My MO did just put me on femara as my first line treatment and I got almost 18 months from it without progression.  Now I'm on faslodex and ibrance.  I think he is a minimalist when it comes to treatment since I started Xgeva every other month and have now moved to every three months.  Of course I'm the weirdo that looks forward to my Xgeva since I swear it gives me energy. 

  • alicepot
    alicepot Member Posts: 2
    edited July 2017


    Sorry have taken so long to respond to the welcoming and supportive words.

    I really appreciate it, IntoLight, JoyherL, and PatgMc, as well as others .

    I'm getting Zomeda. Thanks for that book recommendation.


    I hope to be able to post more in the future. In the meantime, I'm wishing you all only good scans and less pain. My prayers are with you.

  • intolight
    intolight Member Posts: 2,338
    edited July 2017

    I am leaving in the morning for a road trip to Colorado for a couple of weeks to see family and attend a wedding. Not sure if I will be able to post much. Know you all are still in my prayers everyday. My doctor is not too concerned with my arm since an ultrasound ruled out a blood clot and I can attend a Kaiser facility in Colorado if I need it. I am hoping to leave this all behind for a couple of weeks...blessings!

  • sadiesservant
    sadiesservant Member Posts: 1,875
    edited July 2017

    Hi Cive,

    Looks like you may be right. While the nurses did not think the catheter is plugged, my MO and the thoracic surgeon both think it is. The CT indicates that the catheter is in the right place to drain the fluid. So now I am waiting to hear from the surgeon. Hope he calls soon as I'm tired of not being able to catch my breath. Between that and the lovely Ibrance fatigue I'm wiped.

    I see my MO on the 24th and hope things have progressed by then. Not sure what he is thinking in terms of Round #4. I think he may be leaning towards a switch to Xeloda. Not wild about this for a number of reasons. In any event I will get a few extra days off as I should be due to start again on the 22nd.

    Sending everyone positive thoughts and hoping Ibrance continues to be tough on the cancer cells (but perhaps kind to the rest of us).

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

    KC1010 you might talk to your MO about having a y90 for those growing liver mets. That's why I had mine. There's lots more info about my procedures on the the local treatment thread. You might not be a candidate for it, but it's worth researching. I was a candidate even though I have mets in lung, chest and liver. I would advise you to consider this TX before you start chemo. They let me stay on IF during the two months I was having y90. There's only a certain window of time that y90 is appropriate. Also, have a consultation with a interventional radiologist who specializes in this procedure.

    I won't know the results for awhile. It can take up to six months to show up on scans. but, it's supposed to be an effective TX for stubborn liver mets.

    I did see my MO on Tuesday. My PET is scheduled for August 3. I told her about some back pain I've been having so she ordered an MRI of lumbar spine. I have a herniated disc there that does not give me too much trouble. But, a couple of weeks ago it must have gotten inflamed, at least I hope that's all it is. You know the drill, my mind goes to what if I have mets to the spine now? Ugh I won't get results of either of those tests till August 8.

    Meanwhile, I have a cold or "the thick mucus" from Ibrance. She put me on antibiotics for a few days.

    I'll leave you with a funny, unrelated, story. Imagine this......a 69 year old lady at the mall having her ears pierced! Yep, that's what I did yesterday. For some crazy reason my right ear got sort of infected and then completely closed off! So there I was with all the teenagers and babies waiting for my turn to sit in the tall stool right by the front window to get my ear pierced. No, I would not let my daughter take a picture! Ha LOL

  • Dianarose
    Dianarose Member Posts: 1,951
    edited July 2017

    This flu bug is kicking my butt! Nurse called and said my LDH was elevated and potassium was low. Tumor marker went up two points and platelets were 184. Considering how I feel and the whole stent failure I am surprised it wasn't worse.

  • mimistewart
    mimistewart Member Posts: 19
    edited July 2017

    my white counts have been a little low but my onc is not concerned.I'm on ibrance femara and exgeva . my side effects have been slim to none.I would give it a chance to work.Unless of course your doctor can figure out something better for you.

  • Dianarose
    Dianarose Member Posts: 1,951
    edited July 2017

    Doc wants me to hold off on starting a new cycle of Ibrance until labs are done again next week.

  • mimistewart
    mimistewart Member Posts: 19
    edited July 2017

    hopefulgirl I would suggest you request ibrance from phizer directly..........After being diagnosed in Jan. i had to figure out how to get femara and ibrance......i went directly to the drug company,through the nurses at my oncologist and they were happy to help.once my insurance kicked in i let them know and i now use my insurance.hopefully it will work out for you. my mets and tumors has shrunk considerably using this combo....im also on exgeva. Good luck





  • Scwilly
    Scwilly Member Posts: 232
    edited July 2017

    Just a silly question. We are told not to eat Grapefruit because it interferes with Ibrance (I think its said to increase the potency) What about on our week off? Could we eat grapefruit then? Say after 2-3 days so Ibrance has a chance to be out of our system. I just love those little pots of grapefruit from Costco - and we haven't stopped buying them as the whole family likes them - and I'm so tempted! lol

  • hopefulgirl
    hopefulgirl Member Posts: 60
    edited July 2017

    mimistewart. But I live in Canada and I have contacted Pfizer and the have now closed the compassionate funding as at May 31st 2017. Pfizer is kicking in 20 percent but the 80 percent is the hard part. The company I work for is doing their best to get the insurance plan up to speed.

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

    Scwilly - if some very limited pharmokinetics research is to be believed, grapefruit interferes with the pathway that breaks down ibrance. if that is actually happening in your body, then ibrance stays in your system longer at higher concentrations when you eat grapefruit. that said, there are no known problems with getting a higher dose of ibrance. i love grapefruit and eat it occasionally. especially on my week off.

    if the side effects bother you or if your neutrophils are low, i would definitely lay off the grapefruit, even on the week off. but if you are doing fine with your prescribed dose, i wouldn't deny yourself grapefruit. the pharmokinetics of drugs are very individual and may grapefruit may have zero effect on you. its a healthy and tasty food and life is short, as they say.

    >Z<

  • nextmoondance
    nextmoondance Member Posts: 7
    edited July 2017

    While I was seeing MO today, he had a group of internists visiting and a chart coordinator. I was really tired today and over worked myself yesterday house cleaning. I strained my patella ligament so badly I had to take half a pain pill just to get to the appointment. The coordinator told me about a service that will clean your home for free if you are a woman undergoing cancer treatment. I wanted to share this with the group. This is going to be so invaluable to me as it can help me continue to work and not feel guilty about neglecting house work.

    It is called Cleaning For A Reason.

    There are two services in my community. Enter your zip code to see if their is a provider in your area.

    I start my fifth round of I/l tomorrow, which is the reason I cleaned house this week. My 13 yo daughter is visiting my niece this week riding horses and it was my week off Ibrance, plus I took a week of vacation just so I could clean house. I can't afford to make the universe align like that every month though! LOL!