Ibrance (Palbociclib)

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  • gailmary
    gailmary Member Posts: 523
    edited July 2019

    WOW i continue to be amazed at the news here, both the good and not so good. Though I am not taking ibrance for now i find this a very informative and encouraging thread to follow.

    I want to chime in about the mouth sores. Initially on ibrance for 1 yr and I too had the minor sores that would go away a day later. I'm only on faslodex and xgeva now and I've had longer lasting sores a few times. Is it the xgeva?

    Yesterday was scan day for me. 1st since January. Tomorrow dr. I have no reason to believe there has been progression. So of course I hope to hear NED. I know tumor markers aren't always reliable. Dr said that he would start me on ibrance again when they start to rise. Im taking a list of topics to discuss tomorrow. Ill keep you posted.

    GAILMARY

  • BevJen
    BevJen Member Posts: 2,341
    edited July 2019

    Lauren,

    I noticed that you slipped into your note that you take a daily Claritin. I have not yet started on Ibrance because I just did a liver ablation, but I have started on Faslodex. Based upon info from bco, I have been taking Claritin for 2 days before, day of, and 2 days after the shots (I've only had two loading doses so far). But about 5 days after the shots, I have noticed a weird allergy-like stuffiness in my nose, running nose, etc. I do have some environmental allergies, although I've only taken stuff sporadically for them before this. Do you take the Claritin on a daily basis for allergy-like symptoms from the Ibrance? Just trying to figure out what the heck to do here. Thanks.

    Bev

  • LaurenH
    LaurenH Member Posts: 382
    edited July 2019

    Hi BevJen - I also have environmental allergies for which I get allergy antigen shots (since a few years before MBC). I have always supplemented the shots with an allergy med and I had been taking a generic from costco. Once I saw all the comments here about Claritin before and after Faslodex and even before and after Zometa/Xgeva, I switched from the generic Costco allergy med to the Claritin readi-tabs. It does seem to help, though i don’t think I have ever had an specific issues with the Faslodex shots (outside of menopause symptoms), but I’m sure I blame some things on ibrance that may actually be Faslodex, but of course I have no way of knowing. Hope this helps!

    Love to all,

    Lauren

  • simone60
    simone60 Member Posts: 952
    edited July 2019

    For those of you who eat Greek yogurt for mouth sores: how much do you eat and how often? I would like to try that. I've tried just about everything.


  • jaycee49
    jaycee49 Member Posts: 1,264
    edited July 2019

    The eye thing has caught my attention. After my two cataract surgeries in October, I had to use eye drops for edema in both my eyes. Cataract surgery is known to cause edema in the eye. Then, after a few months, I thought huh, edema. We sometimes end up with edema in various places (lymphedema, etc.) because if the meds we take. I keep using the eye drops and if I stop, it comes back. Could this edema be linked to the meds? Asking eye doctor next time.

    Simone, I eat a container of Greek yogurt every day. I don't get mouth sores. Connected? Did I just learn something else here today?

  • intolight
    intolight Member Posts: 2,376
    edited July 2019

    Simone, I also eat one small container of Greek yogurt every morning. I believe it helps both with mouth sores (I don't get them anymore) and gut issues.

  • LaurenH
    LaurenH Member Posts: 382
    edited July 2019

    Simone - I eat Greek yogurt (vanilla with berries and granola) pretty much every morning (as well as a banana) and I get mouth sores - though not often and now I’m wondering if they coincide with the days that I am traveling and maybe can’t easily get yogurt or when I run out and can’t replenish for a few days.... Hmmmm

  • simone60
    simone60 Member Posts: 952
    edited July 2019

    Thanks all. I'm going to add Greek yogurt to my diet. I hope that helps, it would be nice to go a month without canker sores.

  • nicolerod
    nicolerod Member Posts: 2,877
    edited July 2019

    Huband11 AWESOME NEWS!!!!!!! YAY!!!!!

    All those that responded about eye issues, thank you for replying. I have an appointment tomorrow night at an Opthmologist. I do use moisturizing drops usually in middle of night for dry eye. So we will see what they say.

    So I get up this morning eating some cereal and my lower jaw feel sore almost like tired like it doesn't want to chew. All of a sudden there is huge lump under my jaw left side bulging out???? My husband and I are like What the HECK is that?!!?! Then fast as it came...it goes away??? I call the MO nurse she says it doesn't sound related to the breast cancer...I tell her I called my dentist because on the inside of the lip on that left side I keep getting this 1 tiny little clear filled pimple like thing...doesn't hurt, really tiny just weird. She says see what they say if they are not sure just to come in tomorrow. My goodness...each day now I am like what new is gonna pop out??!!!!

    Reference to the mouth sores I have been getting them too and use the biotene mouthwash, thanks to the poster that mentioned they also have toothpaste because I think my Crest may be causing new ones.


  • TnQuilter
    TnQuilter Member Posts: 6
    edited July 2019

    HI ALL,

    I haven't posted in a while and hope everyone is doing as well as possible. Currently on Ibrance, Faslodex, and Xgeva. Everything has remained stable for the last year but my back pain has recently increased, which is worrisome for me because this was my pain when diagnosed. I'm worried that this combo has stopped working. I was on Femara for a few months after diagnosis but changed to Faslodex (dr thought scans were a bit worse but it was unclear). I was hoping to get more time from the Faslodex/Ibrance. I see onc tomorrow and I'm assuming they will order a scan. I'm worried! The back pain has ramped up pretty quickly. No other symptoms. Has anyone else had this happen?

  • candy-678
    candy-678 Member Posts: 4,171
    edited July 2019

    Hi all. Just checking in. Woohoo Husband 11 on the great scan. I made appt for my next CT for next Wed July 17. Praying for stable. Cycle 19 for me.

    Hoping all with upcoming scans have good results.

  • divinemrsm
    divinemrsm Member Posts: 6,614
    edited July 2019

    I get mild mouth sores and don’t care for Greek yogurt but find a container a day of vanilla Activia yogurt seems to help.

  • spookiesmom
    spookiesmom Member Posts: 8,178
    edited July 2019

    Why is Greek yogurt better than the regular kind? When I had really bad diarrhea from chemo the first time around the nurse recommended activa. Took me 2 years to be able to look at it in the case.

  • jojo68
    jojo68 Member Posts: 336
    edited July 2019

    I wanted to ask probably a stupid question....does I Ibrance NEED to be taken with a hormone blocker or can it be taken on its own?

  • jensgotthis
    jensgotthis Member Posts: 673
    edited July 2019

    JoJo, current studies says that it needs to be taken with a hormone blocker too (either an AI or faslodex)

  • jensgotthis
    jensgotthis Member Posts: 673
    edited July 2019

    Have any of you felt like part of your outer ear was numb? I can't imagine this being an Ibrance SE but you just never know.

  • PatgMc
    PatgMc Member Posts: 1,312
    edited July 2019

    Jojo, Ibrance is given with a hormone blocker because that's the only way the trial was conducted.

    A similar drug, Verzenio has been approved with or without a hormone drug.

    I don't know if Kisquali, the 3rd of these drugs is approved only with a hormone blocker.

    Love from PatGMc

  • divinemrsm
    divinemrsm Member Posts: 6,614
    edited July 2019

    jojo, here’s my understanding of how the Ibrance and the hormone blocker work together against hormone positive bc.

    The Ibrance helps stop the cancer cells from growing and dividing by blocking certain proteins.

    The hormone blockers basically starve the cancer cells so they can’t grow.

    So the Ibrance/hormone blocker combo gives bc the old one-two punch.


  • PatgMc
    PatgMc Member Posts: 1,312
    edited July 2019

    DivineMrsM, I'm feeling that happening in my body right now! Thanks!

    Love from PatGMc

  • spookiesmom
    spookiesmom Member Posts: 8,178
    edited July 2019

    I'll ask again. What is so special about Greek yogurt?


  • intolight
    intolight Member Posts: 2,376
    edited July 2019

    Spookiesmom, All I know about Greek yogurt is that it helps gut balance and for some reason it seems to help keep my mouth sores under control. It goes through a process that removes the whey in milk (that contains the lactose). I like it because it is thicker and perhaps that factor keeps it in my mouth longer, or maybe it is how it helps my gut. I don't know. I am not a great yogurt lover, and I only like certain ones, but it seems to help me.

    And YES, please ask questions. Newbies are VERY welcome. This site helped me so much when I was a newbie and I will be forever grateful for all of those patient Ibrance users who share and share again! And it seems like I learn new things all the time from this site even though I have been here awhile. No question is wrong to ask. Someone lurking here probably has the same question and just hasn't asked yet.

  • spookiesmom
    spookiesmom Member Posts: 8,178
    edited July 2019

    THANK YOU. As you can see next to Spookies pic, I am not a newbie to BCO. Just this thread.

    Thank you again.

  • jaycee49
    jaycee49 Member Posts: 1,264
    edited July 2019

    Spookiesmom, I eat Greek yogurt because it has less (sometimes none) fat than regular yogurt. I have to stay away from fat because of my missing gall bladder. Maybe regular yogurt would work just as well against mouth sores. But, here's the really great thing I have discovered about plain Greek yogurt. It can be used in place of mayo in all the Summer salads we love but with less/no fat. We use it in coleslaw, chicken salad, potato salad, etc. and it is really good. I know you didn't ask that but there it is. We had people over for dinner last night and had lots of salads made with plain Greek yogurt and everyone liked everything. Gotta love Summer. It was only 104. We stayed inside.

  • LoveFromPhilly
    LoveFromPhilly Member Posts: 1,019
    edited July 2019

    I love using plain yogurt (Greek or whatever I have) on so many things! I have a dear from who is from India and he taught me how yogurt is used as a side dish or condiment to help cool down the fire caused by all the spices. I find that it helps me incredibly with indigestion and acid reflux, which I somehow now have thanks to Ibrance and apparently now the scans show I have a hiatal hernia?? When and how did that happen??? And I DO get mouthsores but they are pretty calm lately. An occasional one or two.

    About the sore throat - my MO believes that my end of Ibrance cycle sore throat is due to the Ibrance causing mucositis (which is the same reason we get mouthsores). They think that it is mucositis in the throat...so they say to swish with the magic mouthwash and gargle with it. Seems to make sense for me as I am not having any other symptoms!


  • nicolerod
    nicolerod Member Posts: 2,877
    edited July 2019

    So I am no longer getting hot flashes???? I thought it could be bc I had done 4 days of the estradiol cream because it was right after that, that they stopped..then I spotted 1 time...but now I have not used that at all for 4 days and still no hot flashes??? I am very concerned right now ...that my body may be making estrogen....?? I left a message this evening with my MO's nurse. Any ideas??

  • jensgotthis
    jensgotthis Member Posts: 673
    edited July 2019

    I believe Greek yogurt also has more of the good bacteria as compared to a yogurt like Yoplait

  • gailmary
    gailmary Member Posts: 523
    edited July 2019

    Shall I celebrate? My scans on Tuesday showed bone lesion is stable. Also showed a 2 mm cyst on liver. Likely benign as tumor markers are normal. Will rescan in 3 months this time. MO believes tumor markers are indicative 80% of time.

    I hope your all feeling good tonight.


  • blmike
    blmike Member Posts: 195
    edited July 2019

    My wife is just finishing up her first cycle of Ibrance with her "off" week scheduled to conclude tomorrow night. Fortunately, she's had relatively few side effects other than low white blood count and low neutrophil count. The low white blood count has been in the "safe" range to continue Ibrance, but her neutrophil count is too low for her to continue. Today she came in at 500 neutrophils/mcL (0.5). This is going to cause her to delay the continuation of Ibrance as she will have a second off-week to allow her neutophils to replenish. At least her sore throat is gone.

  • gailmary
    gailmary Member Posts: 523
    edited July 2019

    Shall I celebrate? My scans on Tuesday showed bone lesion is stable. Also showed a 2 mm cyst on liver. Likely benign as tumor markers are normal. Will rescan in 3 months this time. MO believes tumor markers are indicative 80% of time.

    I hope your all feeling good tonight.


  • divinemrsm
    divinemrsm Member Posts: 6,614
    edited July 2019

    Nicole, I have no answers but let us know what your doctor says.

    Gailmary, good news on the stable bone scan and here’s hoping for benign liver cyst.

    BLMike, is your wife on the 125 mg of Ibrance? Because it can be lowered to 100 if need be to keep the neutrophil count up.