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Ibrance (Palbociclib)

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Comments

  • Kaption
    Kaption Member Posts: 2,934
    edited September 2015
    Shetland Pony, thanks for the tip. Potato chips are not very healthy, for sure! Just quick salt.
  • Kaption
    Kaption Member Posts: 2,934
    edited September 2015
    Cjanet, I know you are scared, but listen to your doctor. You want to find the right medicine in the right dosage. Most cancer, as far as I know, does not grow or respond really quickly. Take time to sit and talk to your doctor so you can both make a good decision. Breathe!
  • Chattykat40
    Chattykat40 Member Posts: 37
    edited September 2015

    How many cycles did it take for you ladies to start seeing significant improvement in your tumor markers. I'm almost done with my second cycle and so far mine have gone up not down. Really worried that Ibrance isn't working for me. Next labs will be on the 11th... crossing my fingers they go down.

    Welcome Mamatwins... I was also recently diagnosed with Stage IV this past June... also straight out of the gate. Totally blind sided me, so I'm also a newbie to all of this. You are exactly where you need to be. This is a great forum for support and information.

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

    Chatty, my tumor markers came down after the first cycle, but I was told before I even started Ibrance to expect them to go up before they went down. Maybe they are seeing this happen, although it didn't happen to me.

  • Kaption
    Kaption Member Posts: 2,934
    edited September 2015
    Chatty,
    My tumor markers were down after 6 weeks. But as Lynnwood said, I think it has been different for others.
  • Chattykat40
    Chattykat40 Member Posts: 37
    edited September 2015

    I did read somewhere that the hormone therapy also might cause a temporary spike... since I started hormone therapy the same time I started Ibrance that could also be a possibility. Guess I'll just have to be patient and see how the next cycle goes.


  • ABeautifulSunset
    ABeautifulSunset Member Posts: 600
    edited September 2015

    chatty, i just finished my fourth cycle. TMs gone up every month so far. Onc wanted me off after 3. He said if it doesn't start going down by third cycle it probably won't. But my scan showed no further progression, So I wanted to try it a couple of more months. I feel like this drug is so new, you just never know. That said, I won't be surprised if next month is up again... Then I'm off. I hate being in the minor it if women it didn't work for.. But I think that is where I am at. Good luck with your next labs. That'll tell you a lot.

  • Chattykat40
    Chattykat40 Member Posts: 37
    edited September 2015

    I'll bear that in mind Steffajoy... I am willing to keep going longer as long as there is no progression just to give it a fair chance. Two cycles just probably isn't long enough to know for sure. It's just so exhausting... I try not to worry but how can you not. I hope yours go down soon...

  • susan_02143
    susan_02143 Member Posts: 2,394
    edited September 2015

    Month one my blood markers skyrocketed as a percentage. Then month 2, the numbers came down a bit. And now, end of month 3 is my Eureka month. Hoping for more downward trends next month, cause I am greedy that way. :-)

    *susan*

  • Zillsnot4me
    Zillsnot4me Member Posts: 2,122
    edited September 2015

    Not greedy.

    It makes sense if you've started multiple new meds that you would have more circulating dead cells and higher numbers. But I'm no doctor.

    I'm still waiting for my appt with mo but he mentioned trying this. Crossed fingers.

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

    Does anyone else get their Alk Phos checked regularly? I was a bit shocked to see mine went from 232 the day I started Ibrance+Faslodex a month ago to 325 yesterday. I'm still waiting for my CA27-29 results, but I was sick when I saw my Alk Phos continued to climb -- and pretty significantly -- the first month on these new meds.

  • susan_02143
    susan_02143 Member Posts: 2,394
    edited September 2015

    dlb, mine haven't changed that much. I hang between 72-78. I looked at the past year.

    *susan*

  • Myra1211
    Myra1211 Member Posts: 532
    edited September 2015

    While my TMs rise, my aik phos has come down from325 to 175. Whacky stuff. Congratulations Susan, kaption and Lynnwood on your numbers. Myra

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

    My all phos has been elevated ever since I was diagnosed with cancer the first time in 2008. My onc was always checking it because she said it is indicative of bone or liver involvement. She had me get a bone scan every year which were clear until this year. I get a CMP which includes the alk phos every 4 weeks. Mine has been as high as 404, coming down to about 178. My onc also says that Xgeva can make it elevated

  • car2tenn
    car2tenn Member Posts: 132
    edited September 2015

    Dear Cjanet,

    Don't overreact to being taken off Ibrance initially...This is one more powerful drug combination...We have to work within the guidelines regardless of how frustrating it is. Hint: I almost wiped out all resistance by taking the 125 mg and shaking some out trying to make 100 mg pills. Anyway, I am now on a wait because even on 100 mg. my neutrophils are way too low. We just have to bide out time...Hard yes...good luck! Carolyn from Music City

  • duck1255
    duck1255 Member Posts: 15
    edited September 2015

    Unfortunately when I had scans done a couple of weeks ago they show some increase in size of the bone met in my hip. It surprised me because there hasn't been any pain. So I stopped the Ibrance/Femara and have started Faslodex. I did 4 cycles of Ibrance 1 at 125, 2 at 100 and 1 at 75 with extended time before I could start each cycle. My onc doesn't use tumor markers and felt we should move to the Faslodex instead of trying to fight the low white counts. I read somewhere how can your body fight the cancer if your immune system is almost non existent. I'm really happy for those Ibrance works for it would be great if there was a way to tell who it would work for without wasting the time of trial and error. I was on Femara only for 10 months with no progression but added Ibrance and then it stopped working it kind of makes me wonder what would have happened without adding Ibrance

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

    My markers elevated the first 3 months then started going down. What's more important is your scan results. My scans at 3 mos were iffy. Waiting for the next set of scans!

    Babs

  • cjanet
    cjanet Member Posts: 288
    edited September 2015

    I was on 125 mg for about 2 weeks and came off. A week later, this week, I started 100 mg for 2 days. They checked my levels just to see where I am at, and decided they were too low. I don't know the exact levels, she told me but I forgot. So now I am on nothing, though I did sneak a dose last night as I was feeling angry about stopping. The doctor ordered 75 mg. They will check my blood levels this Tuesday and if they are ok, I can start the 75 mg.

  • Florence2006
    Florence2006 Member Posts: 19
    edited September 2015

    Good to know that the fatigue decreases, Stafajoy. I'm still waiting to hear from Pfizer about my appeal with PfizerRxPathways. My income level was too high, but an $1,800 copay is too high for anyone!

  • 3Holly
    3Holly Member Posts: 201
    edited September 2015

    Florence, that is ridiculous, hope they will fix the copay soon for you. My onc said (at today's appointment) that the blood clots are a side effect of cancer, and he doesn't think it was from the Ibrance, so that's good news for you. Unfortunately since my cancer is not curable, they will probably never take me off the shots (they have found the shots to be more effective than cumaden pils). Maybe someday there will be no shots since there is another pill that recently got FDA approved, but I haven't seen any reports yet on how it is working or the SE's.

    Duck, that is weird that your femora stopped working when they added Ibrance. Wish they could figure out why it works for some and not others, and why TM's are accurate for some and not for others.

    There is a new finding that people on beta blockers (for high blood pressure) have been tolerating chemo much better than others for some reason. Makes me want to have high blood pressure (I am on the low side, unfortunately!) Hopefully they can figure out why the beta blockers work, and hope it will lead to something that can help everyone on chemo, no matter what the blood pressure. Beta blockers are very inexpensive so potentially could help many people.

    I will get a blood test next Wed or Thurs to be sure my blood is high enough to start Xeloda, then on to Xeloda. Also might need more radiation if my upper back doesn't improve - having a hard time lifting the laundry basket,etc with pain up near my neck (seems everything involves bending, and deeper bending for us tall people).

    CJanet, I would ask what the policy is at other hospitals for your blood levels, maybe your doc is being too cautious with the Ibrance? I would get another opinion.

    Good luck everyone, praying for all good results!


  • Piemaker2
    Piemaker2 Member Posts: 37
    edited September 2015

    I have 1 pill left but feel so awful today that I don't want to take the last one on this cycle . Have no idea what my counts are don't get checked til wed. Low temp and chills, no appetite, many bm and soooo fatigued.called dr twice, no response yet??!!! Should I take the last pill of cycle 1 or not?

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

    So I just checked on-line and my TMs went up just a bit (307 vs. 298) during my first Ibrance cycle. I'm not disappointed because last time (pre Faslodex+Ibrance) they had gone up 50 pts. in two weeks, and the time before that they went up over 100 pts. in two months. So hopefully these new meds are slowing things down.

  • car2tenn
    car2tenn Member Posts: 132
    edited September 2015

    Ibrance: the End. My tumor markers are up. Progression was diagnosed from a CT with contrast and PET that was done yesterday. Sorry: so sorry to end Ibrance but it did not do for me...I am off to IV chemo therapy next week. I still feel well and have minimal pain...I am so sorry to have "failed" Ibrance and Femara but onward and upward. Carolyn from Music City. With credit to Dr. Roi Dagan of the Proton Center of the University of Florida. What a stellar physician in this difficult medical world.

  • 3Holly
    3Holly Member Posts: 201
    edited September 2015

    Piemaker, I doubt skipping one pill will make much of a difference. It sounds like your counts may need time to rebound, and if you are feeling that lousy, my guess (it is only a guess) is that they will tell you to skip this last pill. My counts were too low this week (had some chills, too, but no fever) - didn't feel sick or anything, but the nurse said to throw away the last pill since I was low and since I am going off Ibrance after this cycle (hated to throw it away due to the cost). Hope you are feeling better soon - I think you will recover during the off week - or maybe they will adjust the dose.

    Car2tenn, so sorry to hear you have to move on. I hope you do well on the chemo and tolerate it well. My first chemo was IV (adriamycin/cytosin and taxol) and it worked well for a long time (that was back in 2008) and I tolerated it well. I am praying for you!


  • marymcp
    marymcp Member Posts: 1
    edited September 2015

    Hi,

    I am new to this community. I was diagnosed with metastatic breast cancer in my spine in November. My recent pet scan was clear although my tumor marker levels have been increasing the past three months up to 125. I was at 175 when it showed up on my spine. I have been on Anastrazole with shots of Lupron to put me into menopause , and my oncologist wants to now put me on Ibrance with Letrisole.


    I do fit the specifications for taking it although I do have a few concerns:


    - This wouldn't be my first endocrine based therapy since I have already been on Anastrozole
    - I wasn't postmenopausal at the time of my recurrence, but have been chemically induced into menopause with my shots of Lupron
    -Ever since Anastrazole and Ibrance, I have had chronic bladder infections. This concerns me since Ibrance causes low white blood cells. My white blood cells have already been below normal since my first diagnosis.


    Any help would be appreciated!!!


    Thanks,
    Mary

  • Sunshine57
    Sunshine57 Member Posts: 13
    edited September 2015

    Well, I guess I will bid you ladies farewell. Ibrance is not working for me. Since May of 2014 I have tried 4 hormone therapy drugs and two chemo pills. Xeloda worked the longest - 6 months. My cancer is not just in the bone but the bone marrow. I will begin Halaven some time next week. It has been 14 years since I have done chemotherapy and I am not ready for this party juice but am thankful for what is available. I am praying for those of you that Ibrance is working. Hang in there and try not to get inpatient. This thread is a great support group and loads of individual information.

  • Hummingbird4
    Hummingbird4 Member Posts: 220
    edited September 2015

    Suzanna, I'm sorry to hear that you did not have success with Ibrance. Such a disappointment when we are hopeful but have progression. I know the dread we feel to have to move on to traditional chemo, but as you said - at least we have that option and hopefully you will have a long success on Halaven with minimal to no side effects. Good Luck.

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

    Suzanna, I'm so sorry that you didn't get the response you were hoping for from Ibrance. Hopefully Halavan will work great for you!

    Mary, for what it's worth, I was also on Anastrzole for approx. 18 mos. until it failed me. When my onc (UCLA) recommended Faslodex+Ibrance as my second tx, I asked her about going to Femara (Letrazole)+Ibrance, since so many women here are getting great results with that combo. Her response was that when an A/I fails you, it's best to switch to something that works by an entirely different mechanism. And since it's the Anastrazole that's failed you, you might want to ask your onc about this. And chronic low white counts could be a problem with Ibrance, since your ANC has to be at least at 1,000 to start Ibrance.

    UCLA played a key role in the development of Ibrance, so they have quite a bit of experience with it already. Of course, your situation may be different than mine for any number of reasons, but I thought my onc's rationale for going to Faslodex made sense and might be something to bring up to your onc. Deanna

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

    Suzanna

    Sorry to hear that Ibrance didn't work for you. Hoping Halaven is your answer!

    Babs

  • susan_02143
    susan_02143 Member Posts: 2,394
    edited September 2015

    Sunshine,

    How disappointing. So sorry that you are leaving us.

    *susan*