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Ibrance (Palbociclib)

16768707273945

Comments

  • Kaption
    Kaption Member Posts: 2,934
    edited September 2015

    Great news Myra! So happy.

    My scan is September 21. My TMs have gone down twice. I'm at the end of cycle 4.

    My MO did blood work weekly, then every 2 weeks. Have another lab Thursday.

    Strange that there is so much variability on TM responses.

  • Kaption
    Kaption Member Posts: 2,934
    edited September 2015

    Great news Myra! So happy

  • artistatheart
    artistatheart Member Posts: 1,437
    edited September 2015

    With everyone's posts about blood test every two weeks I am beginning to wonder about my Onc....I've just finished my 2nd week of 3 and am doing pretty well. But my first blood test since being on the Ibrance is not scheduled until the third week is done? Should I worry?

  • Mama2twinsplus2
    Mama2twinsplus2 Member Posts: 98
    edited September 2015

    I am on day 8 of my first Ibrance cycle and my only side effect has been a little nausea and lots of fatigue which does not help when trying to run after 4 little kiddos! I am so new to all of this that I have a hard time sorting out what is what! This is my first treatment, I was just diagnosed this summer. I know that TM is tumor marker, and I just had them drawn for the first time, but there is no where I can find what should be normal or at least a range? Is it just one of those tests that will be specific just to you and there is no normal? Sorry for the newbie questions! My onc is having me come back at the 2 week mark for bloodwork and then a PET scan at the 3 month mark, which seems so far away.

  • Kaption
    Kaption Member Posts: 2,934
    edited September 2015

    my understanding of tumor markers is to not worry about "normal" range, but to look for trends. Up is not good news, down is. Docs have differing views on which TMs to use and how reliable they are. MyMO uses them, but believes symptoms and scans are more telling. I'm anxious to hear what others say.

  • pearlady
    pearlady Member Posts: 390
    edited September 2015

    My onc uses them also and has stated that they need to be considered along with scans and symptoms. My onc also uses Circulating Tumor Cells (CTC) test.  Not many oncs do that test, but I am all for additional ways to track this.  The thing about TMs is that they are not always reliable for everyone.  My onc relys on them greatly for me, since they have always been reliable.  But not the case for everyone. 

  • Lynnwood1960
    Lynnwood1960 Member Posts: 1,107
    edited September 2015

    My tumor markers are reliable also. Had them checked on Tues and my CA27/29 is now 58.6, was 64.1 last month and started at 203 in April before I began Ibrance

  • pearlady
    pearlady Member Posts: 390
    edited September 2015

    Lynnwood that's great news.  So happy to hear this. I hope we can all look forward to such a great response.

  • dlb823
    dlb823 Member Posts: 2,701
    edited September 2015

    My TMs have always been very reliable, but like your onc, Kaption, mine does not go on TMs alone. However, that said, I wish we had paid more attention to them sooner during a recent upward trend, because although I was not having increased pain and my March 2015 scan was stable, by the time my next scan came around in July, my TMs had continued to increase significantly and I was suddenly in considerable pain. Looking back now at the upward trend -- although I tried to chalk it off to normal fluctuations because I didn't have increased pain initially and my March scan had been stable -- it was by far the most reliable indicator of worsening bone mets.

  • Kaption
    Kaption Member Posts: 2,934
    edited September 2015

    That is interesting dlb823. It does seem important to pay attention. My MO now uses CEA. She used to use CA 27/29. I'm not sure why. I used to be borderline HER2+ but when things got active again I had a new biopsy and I'm HER2- now. That's when I started on Ibrance.

  • friends1
    friends1 Member Posts: 6
    edited September 2015

    I'v been on Ibrance since May and faslodex since February., but the past few months Iv noticed that my nose always has dried blood inside. It always hurts so I always know when I have blood in my nose.

    Why is my nose always bleeding? Does anyone else have this problem? Is it caused from my medication?

  • babs6287
    babs6287 Member Posts: 1,619
    edited September 2015

    Lynwood

    Great results. Wonderful to hear!!! It certainly makes us all hopeful

    Babs

  • Myra1211
    Myra1211 Member Posts: 532
    edited September 2015

    Good news Lynnwood!

    Friends1 , yes I have bloody noses from time to time, but seems to have stopped the last few cycles. When u look up Ibrance you will see it is listed as a SE.

    My onc does CEA and CA-15. This month after cycle 6 both finally went down. As I said previously my onc has another patient who has had very rising TMs for 3 months and improving scans. Some MOs don't even do TMs. It's the big picture that counts.

    Have a good day all. Myra

  • Bobcat86
    Bobcat86 Member Posts: 12
    edited September 2015

    Starting my 4 th month on ibrance and Femara TM went  down the first 2 cycles (started at cea 16 and ca-15 was 12 ) ca-15 went to 6.9 then 6.1 then the third cycle went to 7.3 and Cea went to 23 now cea 27 and ca-15 went to 7.3 but pet scan show great reduction Breast tumor is 1/3 the size and I had a met on iliac area of hip they can't see anymore  and met on left condyle ( skull between ear an base of skull)  has not gotten larger but they can't tell if it got smaller because of the glucose up take in the brain lights everything up but headache is gone. But I am worried about the TM has this happened to anyone else.

  • dlb823
    dlb823 Member Posts: 2,701
    edited September 2015

    friends, I am just on cycle #2, but what you're describing happened to me during my last week of cycle #1, then it cleared up during my off week. I would definitely mention it to your onc, just so he/she knows you're dealing with this listed SE.

  • keetmom
    keetmom Member Posts: 299
    edited September 2015

    I think the plan is to start on Ibrance next week for me, is it hard to get it approved? Is this just approved for off trial use? How is everyone doing on it???

  • friends1
    friends1 Member Posts: 6
    edited September 2015

    what does SE mean?

  • Myra1211
    Myra1211 Member Posts: 532
    edited September 2015

    Side Effec

  • artistatheart
    artistatheart Member Posts: 1,437
    edited September 2015

    Keetmom: I have had very few side effects from either Femara or ibrance (which makes me worry...Is it working???) I do have some fatigue going into my 3 week with Ibrance, but also started back to work full time, so my exercise regimen has suffered. Need to get back on that! I got a rather sore jaw for about a week, just felt like fatigued too. Also got some inner mouth irritation but switched to a soft toothbrush and mouth rinse and it is all better. Maybe a few joint pains but very minor. All in all I feel very well. I have my first appt with Onc on Monday since starting Ibrance so am anxious about results to say the least....Jury is still out on my onc. My first two appoinments she just impressed me as someone just going through the motions and really had no words of encouragement which was extremely disconcerting, and most definitely adds to my anxiety levels.

  • Florence2006
    Florence2006 Member Posts: 19
    edited September 2015

    Just saw my oncologist today. Finished 9 days of Ibrance and 3 weeks of Femara with no side effect either. Also, my white blood count was fine today. Hop

    e it is working as well. Just got approved by PfizerRxPathways to cover Ibrance. My copay would have been $1,800 a month. I am 71 years old and still working. I am strong. Having bone mets in the vertebrae radiated next week. Been struggling with all of this since 2006. Getting tired. Have had liver, lung, and bone mets. Hope Ibrance works, believe me. I am so tired of chemo. I am usually very positive and strong. Sorry for being a little down today, although I've some very good news!

    Had the first meeting of a breast cancer support group in my community this morning. Live in a 55+ "active adult" community. Amazingly, we have 12 members. The meeting was very positive and edifying So good to share.

    Stay strong.

    Hug

  • artistatheart
    artistatheart Member Posts: 1,437
    edited September 2015

    Florence, you have every right to have those down days, never apologize for that, we all get it. I can totally understand that you are getting tired. But you have made a least one person today (ME!) feel hopeful and reenergized by the fact that you persevered through so much. You just cannot put a price on the value of that and I thank you! Stay Strong!

  • ABeautifulSunset
    ABeautifulSunset Member Posts: 600
    edited September 2015

    Myra, are you saying your TMs didn't start going down until 6 months on Ibrance? Did they go up at all? Mine have been slowly but steadily climbing every month on Ibrance. I just started my 5th cycle. Scan last month showed no further progression, but ONC says just because you can't see it yet, doesn't mean it isn't there. Up is bad, no matter. He wants to switch me to Xeloda if things don't start to shift.


  • Myra1211
    Myra1211 Member Posts: 532
    edited September 2015

    Stef, no the first two months each one went up and one down, then 3 times up, now finally both down. Good stable scans with some regression, and I feel fine. As I said be fore he has another pt. Whose TMs have been going up consistently with excellent scans. He insists on the whole picture. He is an internationally renowned onc with many years experience.

    Will he do another scan before switching you? Many onc's don't do TMs and some all different types. I get CES and CA15.

    I feel good and my bloodwork every month has stabilized beautifully. Only still somewhat anemic. I have been able to cook, shop, play mah Jong and canasta and work part time like a normal person, like I told him, just slower

    Myra.

  • Florence2006
    Florence2006 Member Posts: 19
    edited September 2015

    Hi, All,

    Well, I'm feeling very tired (Ibrance, Faslodex, and Letrazole). My last scan showed some mets in the vertebrae. I saw a radiologist last week and am planning to radiate the affected area on Wednesday. I'm a little concerned and not sure that I want to do this. The spot is small but I can feel it. The radiologist was going to take a "wait and see" approach until I told her that I could feel it and could point directly to the spot in my back. They do a CT Scan and an MRI first (both in the same day) and a mold of the back. Obviously, they want to avoid the heart. Anyone have any experience with this?

  • Kaption
    Kaption Member Posts: 2,934
    edited September 2015
    Florence,
    I have had radiation to all lumbar areas in 2 separate occasions. Both times were done specifically to relieve severe pain. Both procedures did what they were meant to do. There was fatigue-that was my main side effect. (I also had radiation after my first lumpectomy to the left breast in 2005. Again, fatigue.)
    Best wishes!
  • Florence2006
    Florence2006 Member Posts: 19
    edited September 2015

    Thanks, Kaption. Sounds encouraging. I am not yet in severe pain, just annoying at this point. But my feeling is that it's best to address it early.

    I also had radiation (mammosite) after my first lumptectomy In 2006.

    This forum is great!

  • dlb823
    dlb823 Member Posts: 2,701
    edited September 2015

    Florence, I'm not an expert, but there is a lifetime limit to how much radiation we can have. That's why RT for pain is usually reserved for severe pain that can't be controlled any other way.

  • cjanet
    cjanet Member Posts: 288
    edited September 2015

    Personally, I wouldn't radiate unless the pain was severe. I worry about radiation hitting other parts of the body and causing side effects (gastric distress, etc). You said the pain is annoying not severe. It's up to you but maybe give the Ibrance some time to work if it is going to work?

  • Kaption
    Kaption Member Posts: 2,934
    edited September 2015

    I coincidentally just asked my radiation onc about the lifetime radiation limit I had heard someone mention. He said that with the small, targeted amounts we get now there really is no limit. The only real issue is that one spot cannot be radiated more than once. So, you do want to choose what to do. Even with thatlimitation, there are techniques and choices.

  • Florence2006
    Florence2006 Member Posts: 19
    edited September 2015

    Thanks everyone for the advice. Will give this serious thought. Will let you all know what I decide.