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Ibrance (Palbociclib)

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Comments

  • nonahope
    nonahope Member Posts: 695
    edited September 2017

    Good morning...

    Txgatata....Great news about your ANC. We love good news on this board. But, we know there will be not so good news, too. We are here for all news -- with open arms.

    PatG....Very interesting article - thanks for sharing.

    Well, someone called yesterday to schedule my first scan. I wasn't home and it was too late to return her call. I will be seeing my onco on Oct.5, so I'm presuming my scan will be scheduled a few days prior to seeing him. Am I scared....you bet!!

    Have a good day/weekend!

    Hope

  • Topaz122
    Topaz122 Member Posts: 12
    edited September 2017

    Hi Marianeelizabeth,


    I received Fulvestrant monthly in 2 injections until a newer nurse hit a vein and vigorously rubbed my hip in June 2016. Until then the other nurses were wonderful in making sure that syringes were warmed and injecting VERY slowly and If I said "that stings" they went slower. My onc. switched me to oral Arimidex (Anastrozole) afterwards. That nurse knew my "posse" and I were going for Thai dinner after appt. so she thought if she gave me hot packs to sit on in the short drive I'd feel better by dinner. Needless to say there was blood all over the hot pack and car seat. We made up compresses in bathroom, enjoyed our meal and ended up in the ER.I don't miss them.

  • nkb
    nkb Member Posts: 1,561
    edited September 2017

    Topaz12- that sounds awful! I can't wait for an oral SERD. Maybe the one that AnimalCrackers is on will turn out to be a great drug.

  • ciaci
    ciaci Member Posts: 315
    edited September 2017

    My first Xgeva shot was excruciatingly painful. As soon as it started going in (it only took half a minute, tops, but felt much longer!), it felt like the nurse was stabbing me, deep into the muscle. My husband rushed forward - he was waiting by the door - and yelled at the guy: "didn't you warm it up first?!" Apparently not... :(

    Before I could even say anything the second month, I saw the nurse (a different one) palm the vial, explaining that he had taken it out of the refrigerator twenty minutes before, but was checking to make sure it wasn't cool at all. I braced for pain, but quite literally felt NOTHING, not even the prick of the needle. What a difference! He said they were told never to administer anything straight out of the fridge, and would be sure to remind the nurse who had done my previous injection.


  • Jaylea
    Jaylea Member Posts: 440
    edited September 2017

    Nonahope, good luck scheduling your scans. I just had my first CT and bone scan at 3 month and am awaiting results. MO was pleased with my overall labs and initial response to treatment, but troubled that I'm experiencing pressure in my sternum (met site). So I'm somewhere between hopeful and terrified.

    Z-sending you prayers for safe and successful travels.

  • airlinegal
    airlinegal Member Posts: 253
    edited September 2017
    Z.....wishing the very best. I feel so sad right now. This is not easy to take all this in....keep the spirit and please let us know how you are doing. God bless us all.
  • cure-ious
    cure-ious Member Posts: 2,897
    edited September 2017

    Thought this was an interesting story and the discussion in the video at the end is not to be missed!

    https://www.newyorker.com/culture/personal-history...





  • jensgotthis
    jensgotthis Member Posts: 673
    edited September 2017

    Z, I'm so sorry about the progressions and am cheering you on all the way to Japan. Prayers for yo

  • nonahope
    nonahope Member Posts: 695
    edited September 2017

    Good morning...

    Jaylea...Thank you. I am a nervous wreck thinking about this first scan. Keeping you in my thoughts and prayers hoping your pain is "nothing"...keep us posted.

    Hope

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

    PatgMc-

    Sent you a PM this AM.

  • 50sgirl
    50sgirl Member Posts: 2,071
    edited September 2017

    Hope and Jaylea, I will keep you in my prayers and hoping you both see good results on your scans.

    Hugs and prayers, Lynne



  • singlemom1
    singlemom1 Member Posts: 260
    edited September 2017

    Hi everyone, I have not posted in awhile and I just starting reading last week to try and catch up. In the meantime, just wanted to check on something. Has anyone had a fever over 100.4 and just waited to see if it went down? I was originally told to go to the ER if I had a fever this high when I was first prescribed ibrance. I really don't want to go the ER and I am pretty sure it is just a bad cold. I want to wait it out until tomorrow when I can go see internist or speak to MO. Has anyone else done this? It is just 100.4.

  • airlinegal
    airlinegal Member Posts: 253
    edited September 2017
    I had a 100.4 back in Feb and they told me to go to the ER. I did and after 2 hrs it was obvious I was going to be the last on the list for blood work. SoI left..checked myself out and the next day my fever had gone down. I had a bad sinus infection. I was due for blood work the next day and they delayed the Ibrance an extra week because immune system was down.
  • airlinegal
    airlinegal Member Posts: 253
    edited September 2017
    Also it was after hours when I called about the fever and did not speak to my MO. Whomever I spoke too was not sure what I should do. So they said go.
  • sadiesservant
    sadiesservant Member Posts: 1,875
    edited September 2017

    I am not a fan of emergency at the best of times so must admit that I have waited it out on more than one occasion. If the fever persists or increases I do go. Not recommending this approach but I am still here..

  • nonahope
    nonahope Member Posts: 695
    edited September 2017

    Good morning...

    Singlemom....I was told that it was imperative to call the oncologist if I ever had a temp of 100.4 for a period of 24 hours. Fortunately, I've never had this issue. Hoping yours is just a cold and nothing more.

    Hope

  • cive
    cive Member Posts: 265
    edited September 2017

    My pulmonologist and the hospital said to call if I had a fever of more than 101.  Otherwise take Tylenol as needed.  Of course I wasn't on Ibrance at the time, but I did have a chest tube. 

  • teacher911
    teacher911 Member Posts: 152
    edited September 2017

    Hello,

    Hoping that someone has information on the their iron levels since starting Ibrance. I have been on 125 for 11 cycles The past few cycles I have had to wait to start again but neutrophils do come back up to 1. I have been complaining about fatigue and hair thinning and low wbc, rbc and neutrophils like everyone else. The past few months the fatigue is worse, shortness of breath etc... I said to my oncologist that I felt better when I was on dose dense chemo back in 2013. So she completed iron studies on me and of course she is now out of the office for a week. Curious my Ferritan is high along with my iron saturation. Not really sure what it means. Sounds like too much iron can be as debilitating as too little. Does anyone on Ibrance have the Iron looked at in their blood work?

    Thanks, Michele

  • tanya_djamila
    tanya_djamila Member Posts: 1,541
    edited September 2017

    Hi Teacher911,

    I have only been on the 125 Ibrance for 4 months. My most recent bloodwork I had low iron but not low enough to reduce the mg. of Ibrance to 100. My doctor said that would be the course for me if my WBC dropped to a certain level. I'm sorry that I don't know what that level is. Do you know why you have to stay at 125mg?

  • nkb
    nkb Member Posts: 1,561
    edited September 2017

    Teacher911- iron studies can be complicated to interpret. Your MO who is also a hematologist will put together all the results to figure out the cause. Did you get a thyroid test also? (called TSH )

  • teacher911
    teacher911 Member Posts: 152
    edited September 2017

    I've been hypothyroid for 28 years. My levels are checked twice a year. Never this level of fatigue, and so persistent.

  • Hobbes12
    Hobbes12 Member Posts: 88
    edited September 2017

    the concern on Ibrance is that you will develop febrile neutropenia. In febrile neutropenia your immune system is so weakened that it cannot resist the normal, healthy bacteria on your skin, in your gut etc. It starts with fever but can rapidly progress to multi organ failure and death. In the Paloma II trial 80% of women on Ibrance developed neutropenia but only 2% developed febrile neuropenia. I had febrile neutropenia when I was on docatexol. I had a fever of 100. I went to the ER and in five minutes I was in an isolation room and seen by a physician.

    This is why you should go to the ER if you run a fever while on Ibrance.


    Jo

  • cive
    cive Member Posts: 265
    edited September 2017

    Teacher, low wbc and low hemoglobin can also cause tiredness.  Fatigue is my major side effect and would get better because I was alternating months with 2 weeks on with 3 weeks on when I was on 125 mg.  I got my MO to lower my dose to 100 mg, and I am less fatigued and do 3 weeks every month.

  • Jaylea
    Jaylea Member Posts: 440
    edited September 2017

    Hi all, my MO just called with my scan results which were mixed. Lungs and lymph nodes are responding with stable or smaller tumors. Bones mostly stable, but doc is seeing activity in my right rib cage. Also seeing area in my liver that looks different, very small (6mm). She's not convinced either is evidence of progression, but will keep me on a tight leash, with next scans in 2 months.

    Anyone else have this kind of "mixed response" on Ibrance? It's hard to figure that it would work in some areas and not others.

    Teacher, I hope you find the right drug combo to get relief from the fatigue.


  • cure-ious
    cure-ious Member Posts: 2,897
    edited September 2017

    Jaylea, Sure, lots of reports like that on our threads. How long have you been in treatment is important. If its been awhile and the cancer looks like its stirring from a while of slumber, is different that if you are early on, and its showing improvements but not complete. It can take 6-9 months or longer for full effects of this combination to show. Two month check-up scan sounds like a very reasonable course.

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

    Jaylea, Cure-ious is right. Ibrance is known for weird things like yours. The reason we didn't read about situations like yours in the studies is that people were removed from the trial if they had progression. Remember that we are pioneers and it's entirely possible that many of us can live for years and years with these ups and downs. One of my local friends had two tumors she could actually feel come up on her neck after a year or so on Ibrance. Our oncologist left her on the drug and they've completely dissolved. She has passed the two year mark on the Big I! I might add that she is more than 17 years past the first bone metastasis. We just have to keep praying and believing and living our lives. Words and numbers on a paper cannot control us!!

  • pedsnurse
    pedsnurse Member Posts: 10
    edited September 2017

    Jaylea, I had my first scan in August after starting Ibrance in May. I too had mixed results. Every I had previously was healed although I had 2 new spots show up on my left hip. Both my primary MO and my MO from City of Hope still felt I was on the right tx and need to give it more time for full effect. I was quite nervous about that but feel reassured and am in agreement! Such a tough road we have so many ups and downs

  • nonahope
    nonahope Member Posts: 695
    edited September 2017

    Good morning...

    I will be having my first CT scan and nuclear bone scan on Friday. I am so scared, but reading the various results from those on this treatment eases my mind a bit, so that I might not panic if my results show mixed results from being on the meds for only 3 months. I'm feeling ok on this combination, so hoping I can stay on it. The initial fatigue has not been an issue of late, so hoping this is a good sign.

    Hope

  • singlemom1
    singlemom1 Member Posts: 260
    edited September 2017

    Thank you for the feedback on the fever. It was gone the next day, so never needed medical care.


  • tanya_djamila
    tanya_djamila Member Posts: 1,541
    edited September 2017

    I will be having my first scan since starting Ibrance next week. I have anxiety when I think of it. I also had a hysterectomy and radiation since my diagnosis. I'm expecting the area in my back and hip to be smaller the pain was reduced after the radiation. I feel other twinges of pain in other places so... I've been trying to swim just to be active. Today I didn't do it and I have an appt. soon so...

    I also have night sweats since the hysterectomy. Has anyone tried acupuncture for hot flashes?

    Thanks for the support ladies. I don't want to burden my husband with any of this right now. I need him to remain optimistic and calm.

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