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Ibrance (Palbociclib)

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Comments

  • candy-678
    candy-678 Member Posts: 4,173
    edited August 2018

    Oh, PatgMc I love you girl !!!!!!

  • Penny-78
    Penny-78 Member Posts: 271
    edited August 2018

    Ain’t PatgMc something! :-

  • karpc
    karpc Member Posts: 192
    edited August 2018

    Thanks everyone for posting about the SOB. My onc looks at me like I'm from another planet when I mention any side effects from Ibrance. She even pretends like fatigue is unusual! I am so grateful for everyone sharing on this thread. I feel less crazy and alone.

    The day before I was diagnosed, I skied hard all day long. I felt great with no symptoms. I am accustomed to exercising daily. I was diagnosed with a 9mm liver met. I had it ablated within a month of diagnosis. My scans have been clear ever since.

    I still exercise quite a bit, but I go much slower because of the Ibrance fatigue. Also, I have noticed the SOB. It started 6 months ago with my first cycle of Ibrance. It scared me at first, but I am getting used to it.

    While my onc can pretend I shouldn't have any SE's, I know the fatigue and SOB is from the Ibrance. I would love to figure out why this happens. Perhaps from lower RBC?

    ~Kar

  • dsodasso
    dsodasso Member Posts: 16
    edited August 2018

    I just caught up reading posts from the past week. Great news for many of you! I just finished 2 weeks of my first Ibrance cycle and received my second loading dose of Faslodex. I had nurse inject each over 1 minute and I am not at all sore. Hoping I feel the same overnight.

    However, after 2 weeks on Ibrance my neutrophils were 0.88. Still taking 3rd week doses but they want to do blood work again next week. Has anyone else dropped low on first cycle? Do most rebound on off week?

    Love reading all your posts!❤️

  • janky
    janky Member Posts: 478
    edited August 2018

    dsodasso- after cycle 1 of Ibrance my neutrophils were .3 (critically low) so I had to wait 3 weeks before cycle 2. After cycle 2 they were .4 (critically low) waited 2 weeks, then finally after cycle 3 they were at .8 so I still had to delay 2 weeks, hang in there and be patient. I have had 2 sets of scans done 3 months apart, and even with the delayed starts I am stable.

  • EV11
    EV11 Member Posts: 86
    edited August 2018

    dsodosso-

    My WBCs and ANC could not tolerate 125 mg, nor 100 mg-- I stooped those cycles at day 14 and at 125 mg had to wait 2 weeks to resume at 100 mg. Then, we tried 2 moths at 100mg in the hopes that my body would acclimate, but it never did.I had to stop both of those cycles at day 14 for ANC around 0.8 if I remember correctly... With much trepidation I went to the 75 mg dose-- that was 39+ cycles ago. I was so nervous that it wouldn't be a high enough dose to be effective, but that has not proven true...and in fact, at the San Antonio Breast Cancer Symposium that I attended last December there was a poster presented that reported near-identical PFS lengths (only differed by around 10 days) between the three doses...oddly enough the 100mg dose had the best (by about a week) PFS and 75 mg the "worst" by about 6 days...so all in all, it doesn't seem to matter which dose you are on.

    My onc, who is also a researcher, thinks that from a cell-biology standpoint the best dose is the one that you can take on the recommended 21/7 cycle; she thinks there is less efficacy from a cell biology perspective of being on a high dose but with extended time off. The more time on drug as opposed to the time off drug is important. Plus there is also the potential benefit to the rest of your organs and sense of well-being to be on the lowest effective dose--since that causes the most minimal side effects possible, and keeps your body in the best shape it can be in to allow you to be on treatments for the long haul that is MBC.

    As I complete cycle 42 on Ibrance I must say that I greatly appreciate her perspective--I have had very minimal side effects since going on the lower dose and it obviously has been very effective for me-- so if you happen to find that you can not tolerate the higher doses, don't feel too concerned.

    I hope that you fare well for a very long time on Ibrance; lots of response and little side effects is my wish for you!

    Elizabeth

  • njgirl13
    njgirl13 Member Posts: 13
    edited August 2018

    Hey All,

    Is anyone having a probelm getting Ibrance? I pick it up at my doctor's office. That was my decision because the whole cost issue and I didn't want to take a chance...

    Anyway, I keep getting told that there's an issue with their pharmacy getting the drug. It's been over 12 days and I'm starting to get upset. I'm not sure if there's something I'm doing wrong. I'm certain the assistant is tired of hearing me say, "there's no rush, right?" Any advice is greatly appreciated.


  • junieb
    junieb Member Posts: 945
    edited August 2018

    Sandie Beach - My MO initially had me on Xgeva monthly for 9 mos, then changed it to every 3 mos. I faithfully took my Vit D3, Calcium, Magnesium, etc. My bone density appeared to improve, but then I had a fracture of L3 & L5, and now I have a fracture in my left foot.

    Since this has happened my MO has put me back on Xgeva monthly again. I sure hope it helps. Those fractures really hurt.

  • Grannax2
    Grannax2 Member Posts: 2,387
    edited August 2018

    PatG. I wish I lived near an Amish bakery!!! I'm so hungry after your description of donut, I'm going to find one, NOW. Keep on making us smile. 💞

  • Selborne
    Selborne Member Posts: 4
    edited August 2018

    i cannot believe it! i have had cravings for donuts since starting Ibrance. i thought i just was being greedy. now can we have it as a known side effect, therefore beyond my control ,please, please ? [even if it is not covered by insurance :) ]

  • PatgMc
    PatgMc Member Posts: 1,312
    edited August 2018

    candy-678 is the promoter of Amish donuts and I think she would want all of us to have one so we can get our OOMPH back!

    Happy Friday!

    I'm hoping to eat a Zofran sandwich and get to the opening reception of Shake, Rattle and Roll tonight. Cross your fingers! If you like, you can see the show at www.lrossgallery.com. I'm excited to have 8 pieces in it. Making them saved me on some hard days this past winter and I'm so thankful to God. If you click on Exhibitions, you can see the titles. It's safe to say mine are the totally weird ones!

    PatGMc

  • iwrite
    iwrite Member Posts: 746
    edited August 2018

    Into Light,

    Hope you had a great time in the Springs. I go back and forth between sea level and 6500 ft and my labs have been steady. You should not have any issues. (Sometimes they are even better at altitude.)

    Having tooth issues...did a root canal to repair a painful molar and it still hurts 4days later. I’m on amoxicillin and an anti microbial mouthwash. He wanted to take it out, but I’m pushing for extra healing time to avoid an extraction. Trying to avoid the risk of osteonecrosis. It happens more often if you been taking biosulphates (denosumab) for a long time and I’m at almost three years. Ugh...something else to love about cancer

  • peculiargirl
    peculiargirl Member Posts: 44
    edited August 2018

    My husband took me to Shipshewana on Tuesday for my birthday. I had Amish cookies instead of donuts because there's a great local bakery 2 doors down from the cancer center - whenever I have a shot or appointment, I figure I DESERVE a donut, right??? Winking

    Kathy

  • ninetwelve
    ninetwelve Member Posts: 328
    edited August 2018

    Got my results back from my latest scan. Still stable. (Yay). Coming up on my 4 year cancerversary, in September.

  • intolight
    intolight Member Posts: 2,381
    edited August 2018

    thanks Iwrite. I am sorry we could not connect but I barely had enough energy for the little I did! We are heading home and I already feel better.

    NineTwelve, congrats on 4 years! You continue to spread hope.

    I always crave donuts. All of this talk has me looking for a donut shop while on the road.

  • dsodasso
    dsodasso Member Posts: 16
    edited August 2018

    Thank you Elizabeth and janky! Just hope I can get through this week with no fever. Then we will see.

  • PatgMc
    PatgMc Member Posts: 1,312
    edited August 2018

    Congratulations to NineTwelve! We love that you're 4 years out and going strong!

    PatG

  • JoynerL
    JoynerL Member Posts: 1,392
    edited August 2018

    HOORAY, NineTwelve!!!

  • Seaway
    Seaway Member Posts: 158
    edited August 2018

    NineTwelve; 4 years out and going strong. Yahoo!! So happy for you.

    Cathy

  • holmes13
    holmes13 Member Posts: 192
    edited August 2018

    hurray nine twelve!!! What an inspiration! I go for my first pet scan since starting ibrance in September. Praying for at least stable.

    do any of you feel like your doctors wouldn't do the scans if you didn't ask? My husband gets upset about me being on this forum ( because when sisters pass I think about my own demise) but if I didn't belong to this forum I would never know what to ask or to expect. My doctor wants to go mainly by how I'm feeling. I want to know if there is progression so we can get ahead of it.

  • PatgMc
    PatgMc Member Posts: 1,312
    edited August 2018

    Holmes13, tell your hubby I've been part of the breast cancer community for coming up on 25 years, running a support center for about 20 of those. My experience has been that people do better when they have connections with other survivors. The oncologist who was behind our center told me many times that he felt like the hope survivors gave each other did more to heal people than all his medicines. I believe that is true. The more people isolated themselves, the worse off they were. Yes, sometimes friends die from MBC but lots of people don't. We grieve when they do but we also learn that the world keeps turning. I've lost many dear friends to cancer but I've learned from all of them, how to live and how to die.

    It's especially important in this world of new cancer treatments that we share our experiences. These doctors are just learning about what they do to a body. Ibrance has so many side effects that come and go, varying with each patient. When I saw on here that someone's doctor blamed her Ibrance fatigue on a lack of exercise, I nearly passed out! For years my friends were telling their doctors they had joint aches from AIs and the doctors said it was all in their heads. Of course, that finally made it to the SE lists! Women often came to me in tears because they told their doctors they had gained weight due to Tamoxifen or an AI. Doctors told them to "push away from the table" which made me crazy! My doctor writes down all the side effects I report. A few years ago he expressed doubt that my foot pain was related to Femara until I stopped that medicine and the foot pain ceased in 6 weeks. My hearing loss and the popping in my ears are not on any Ibrance SE list but they were real and improved when I reduced the dose. Now the doctor knows when the next patient brings it up.

    About the scans: I have chosen to have them less often than my doctor would like. You get to do this your way. I chose not to have any scans for a few years when chemo for the first mets got me to NED. I took the Femara until my quality of life suffered dramatically, then quit and just lived my life. I had a new pain (which turned out to be arthritis), asked for a PET/CT and the widespread bone mets showed up. I started Ibrance/Arimidex/XGeva and got almost back to NEAD in 3 months! I have no regrets.

    I know we're all at different places in life. I'm 68 years old. If I were younger and still raising children I might feel more anxious about this. I have my moments but mostly I try to remember that God knew how many days I had before I got here. I also know that however long a life is, it's a complete life. I'm expecting many more years and hope to die in my sleep from nothing some day!

    I'm thankful to have supportive family members who understand that I'm not desperate to live endless days if they're not pretty good days. If I can't manage treatment comfortably and have some good time, I'll decide to stop it.

    Now I'll take my longwinded self off the Saturday Survivor Soapbox! Have a happy week-end, everybody!

    Love from PatG


  • Grannax2
    Grannax2 Member Posts: 2,387
    edited August 2018

    PatG.I love you, keep on writing your Saturday Night Survivor Soapbox. I read it last night, it made me smile and relax. You always know the way to put things in perspective. Was this the weekend of your art show? I hope you did well.

    The past four days I've had a worker here doing my guest bath and misc. Finishing things up in guest room and hall. I am completely out of remodeling budget. Gone. But I'm happy with the five rooms that are complete. Ill send pics when I get things back in place

  • buzzy06
    buzzy06 Member Posts: 12
    edited August 2018

    hi, new to this page,,,but I just started on ibrance two days ago,,no side effects yet  and im hoping it stay that way...started out as breast cancer in 2006,clean for 9 yrs then moved to colon,then,urterer,now a very small spot on my upper spine...so dr started me on ibrance..praying that this helps and gets rid of it all and never returns...any helpful hints would be great,if I get side effects..thanks..

  • buzzy06
    buzzy06 Member Posts: 12
    edited August 2018

    yes, dr told me and the info booklet said no grapefruit or grapefruit juice too..

  • janky
    janky Member Posts: 478
    edited August 2018

    buzzy06 - Welcome! no pomegranate or blood oranges either! It seems like the first cycle gets done, then on the week off I experienced random nausea, off and on, not too serious, then the random diarrhea resolved with 1 imodium pill, more overall fatigue than before. The worst for me is low neutrophils, so that when I get my bloodwork done at the end of the week off, I generally have to wait at least 1 or 2 more weeks to start next cycle - just gonna start #6. You will find all manner of advice and support here, don't ever feel like you have 'stupid' questions, they are all valid in the MBC journey....

  • TnQuilter
    TnQuilter Member Posts: 6
    edited August 2018

    I too have extensive bone mets and wondering how you're doing now?

  • TnQuilter
    TnQuilter Member Posts: 6
    edited August 2018

    Thanks for your reply. All positive news gives me hope. I'm wondering if your bone aches and stiffness go up and down? After about three cycles of Ibrance, my pain was almost nothing but now extremities are getting more achy and stiff. That concerns me. CT scan tomorrow.

  • NettaGER
    NettaGER Member Posts: 128
    edited August 2018

    TnQuilter: Are you on Ibrance plus Letrozole? I had the same experience wrt bone aches and stiffness, starting after about 5-6 cycles of Ibrance. I learnt that this is a Letrozole SE. Our bodies just do not like not having any estrogen.

  • MuddlingThrough
    MuddlingThrough Member Posts: 655
    edited August 2018

    I'm on the fifth round of I/L. I'm noticing mild skin irritations such as anywhere there's a little friction as in the elastic leg openings on the panties, under the bra band under the breasts etc I changed panties to ones with no elastic in the legs and I'm putting powder in areas of friction. It doesn't appear to be yeast, but who knows?! Just wondering if others have had problems and what you did about it if so. It's annoying.

  • Seaway
    Seaway Member Posts: 158
    edited August 2018

    muddling through; I have new itching around my elastic leg openings and under my bra. It is annoying but never thought of it as a se. lol. I do much the same and this month (my 4th) is not as bad as the last.

    Pat; I do hope you're enjoy great success with your art show. Your work is amazing. I love your posts and they give me so much positive encouragement. I'm not sure I'm brave enough to go without scans or treatments but we'll see. Thank you so much for your presence here!!!

    I remember when I had my first chemo's back in 2005....AC and Taxol. I complained about a poor memory and was ignored They have since confirmed chemo brain...which we all know exists. So I guess in time with enough of us complaining the same will happen with these drugs too. I told my onc about my dizziness and vomiting and was told that wasn't likely from the drugs. Hahahaha. Right.

    Hope you're all enjoying your weekend.

    Cathy

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