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Ibrance (Palbociclib)

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Comments

  • Myra1211
    Myra1211 Member Posts: 532
    edited July 2015

    Just got a call from Pfizer Appeals. Been approved until 12/31/15!!! Hooray, I'll worry Insix months. thx for all your support. Myra

  • mimipickle
    mimipickle Member Posts: 160
    edited July 2015

    Holly,

    Sending you pink light

  • mimipickle
    mimipickle Member Posts: 160
    edited July 2015

    Myra,

    Fantastic!

  • pearlady
    pearlady Member Posts: 390
    edited July 2015

    Great news Myra!!!  That was quick.

    When my Ibrance was approved in February it was for one year.  So I'm hoping for two things. First that the Ibrance is still working in February 2016 so that I can deal with the lengthy approval process again.  Hoping that for all of us.

  • Romansma
    Romansma Member Posts: 650
    edited July 2015

    Shoot, Holly, I'm sorry. My only thought is that 4 cycles is still very early on for a hormonal drug. They tend to work slowly before picking up momentum. Was the progression significant in most areas? How long since your last scan?Really hope you can find something that works for you. Did your MO mention switching to Faslodex and Ibrance? Might be worth thinking about since the SE should be very tolerable.

    Myra, I am taking Dilaudid for breakthrough. I've had it for a while, but wasn't using it much, just when things got overwhelming. However, I was taking Oxy 7.5 4x a day and the Tylenol was getting to be too much. So, I'm trying to cut back to 3 Oxy and use the Dilaudid to extend the time between Oxys. I have 4mg Dilaudid. It still only lasts 3-4 hrs. It's really meant for breakthrough pain since it's short acting. Can you get higher Vicodin, maybe 7.5mg without upping the Tylenol? I'm really considering a patch because I feel like I'm on a roller coaster all day. Mornings are so tough. I hurt so bad I don't want to sit up to take the pain meds. Hope you find something that works for you

  • Lindalou
    Lindalou Member Posts: 598
    edited July 2015

    Myra, Hope,

    I have used Fentanyl 12 MCG/HR patch which is used for 72 hours and then you take it off. It helped me when I had my spinal surgery. It worked well and the side effects are similar to Oxy. It may provide you with some long acting relief.

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

    Myra, great news! For all of the ladies with pain issues, I can't imagine how hard it is living with chronic pain. I have been fortunate that my pain is minimal still and controlled by Tramadol. As a nurse, I do know that many people get good pain relief from the Fentanyl patches. They are easy to use and provide time released pain relief for 72 hours. They also come in different doses that can be increased if needed. Many people report pain relief without feeling " loopy" from the narcotic in it.

  • starbrightlyshines
    starbrightlyshines Member Posts: 73
    edited July 2015

    Myra-I take 2 mg and used it every 6 hours for quite a while. Now I use it in the morning and afternoon and take a muscle relaxer at night. When I took the 4mg it did make me a little loopy, but I was in so much pain that I didn't care! The relief was worth it.

    Hope-Sometimes I will take it in the morning early and then go back to sleep. It makes the mornings much easier.

  • Romansma
    Romansma Member Posts: 650
    edited July 2015

    I just remembered that someone asked about which tumor marker I get. It's the CA27-29. It seems to be a good indicator for me, so far.

  • mscal02
    mscal02 Member Posts: 167
    edited July 2015

    Hi All : I've been approved for Ibrance , I'm already taking the Femara. I have a new PC and when I went to see her yesterday she asked how long I'd had cancer and I told her since 2001 and she told me I was a miracle . Xeloda failed me, so I'm hoping to chip a few years with this drug,If not I'm prepared to try something else. All we can do is keep hoping for more time here with our families as we try different drugs and bear the side effects. I just thank God everyday for a reasonable portion of health and strength.

  • pearlady
    pearlady Member Posts: 390
    edited July 2015

    Hi Mscal02.  Welcome.  I hope we all will get the years you are looking for on Ibrance.  You will find this a very supportive group of women.  Interesting that your PC told you that you were a miracle.  I have been Stage 1V since 2001, but I never considered myself a miracle.  Just lucky and having the right medical and support team.  Xeloda didn't work that long for me either.  My onc is very hopeful for the future with the Androgen blocking drugs.  So I'd like to stay on Ibrance as long as possible.  Its certainly more doable than some of the other treatments I've had.

    Best of luck to you with Ibrance.

  • Myra1211
    Myra1211 Member Posts: 532
    edited July 2015

    hey all, my onc took me off 5/325 hydro because my alkaline phosphate is elevated. It has been all along. It started at 345 a year ago and now it is down to 200, so I am confused. It keeps my pain away 6-7 hrs and all nite,w/o problem. Dilaudid 2 mgs doesn't even do 3 hrs. I am going to insist on going back.

    As for Pfizer, I had the nicest rep who told me exactly how to write and word the appeal. It worked and worked fast, so I am thrilled.

    Good day to all myra


  • mscal02
    mscal02 Member Posts: 167
    edited July 2015

    Thanks pearlady : I've learned so much from these discussion boards . When I go in to see my Oncologist I can already have a plan before he discusses his intent with me . I have people calling me that are newly diagnosed for advise, and it's all because of these boards that I can explain the side effects from the drugs and they can have a decent and knowledgeable conversation and know what questions to ask their doctors. Whenever I change treatments, I know that I can come to these boards and get reliable information and be informed of side effects by all of you trailblazers.

  • intothewoods
    intothewoods Member Posts: 179
    edited July 2015

    Hmmm.. just spoke to the oncology pharmacist. My WBC counts are a little low- 910 which surprised me since I'm on just 57mg. We'll see what onc says.

    Myra, so happy about the appeal's success, and sorry about the pain meds thing. I would be confused too.

    and Pearlady, wow! I hadn't clued in to the fact that you are almost 14 years in. That's wonderful and inspiring.

    Lisa


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

    Myra

    So happy for you!!

    I had what I think is some good news today. Since March, my cancer blood markers have been steadily going up. That, coupled with the spots of activity on my spine (which are not definitive at this point) really made me nervous. Today, I found out that my markers went down (had the blood test last week) Maybe the Ibrance/Letrozole is starting to work on me-certainly hope so! Fingers crossed!!!!

    Babs


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

    Great news Babs!!! Fingers crossed for all of us!!

  • ABeautifulSunset
    ABeautifulSunset Member Posts: 600
    edited July 2015
    That's so great, Myra. One less thing to worry about.


    Babs, good news.i hope that trend continues.


    Mscal, it's true for me too. Now when I go to the Onc, I'm loaded with questions that I have because of conversations on this board. It's feels very powerful to have information.

    Stefanie
  • pearlady
    pearlady Member Posts: 390
    edited July 2015

    Babs great news! Hoping the trend continues.

  • Romansma
    Romansma Member Posts: 650
    edited July 2015

    Interesting that you mention Androgen blocking drugs, Dorothy. I am having testing done on my tumor sample to see if these drugs might work for me. I need to learn a bit more about it.

    Babs, great news!

    Myra...wooohooooo!

    Sorry, can't leave you guys yet!


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

    Hope, please don't leave! I have learned so much from you!!

  • Myra1211
    Myra1211 Member Posts: 532
    edited July 2015

    Hey Hope, how about we do an honorary Ibranceland guinea pig club! We can all stay as long as we want!

    Enjoy your day all....Myra.

  • pearlady
    pearlady Member Posts: 390
    edited July 2015

    Hope please let us know regarding the androgen blocking drugs. My onc also told me that if/when the time comes I will need to get another bone biopsy. Ugh. But of course I will do it. From what I've read even women who are ER/PR-' are very likely to be positive for the Androgen.

    Hope we know you are not going to leave us! We won't let you. We have all learned so much from you.

    Am at my onc now getting my C and D. The great news is that 2 days after the end of my 5th cycle of Ibrance my blood work is very good. Reds only slightly low. All else normal.

  • JFL
    JFL Member Posts: 1,373
    edited July 2015

    Pearlady, is a bone biopsy performed?? Very curious

  • mscal02
    mscal02 Member Posts: 167
    edited July 2015

    Hi All: I've been approved for the Ibrance and it will be delivered tomorrow, so I guess I'll start tomorrow . I went grocery shopping today to get dinner items. I'm not a breakfast eater and lately have been drinking a bottle of Boost and eating fruit, mostly watermelon since it's in season.I can't thank you all enough for all the help you've given me before I start this drug. The pharmacist was glad to be able to breeze through the side effects with me because I told her that I had plenty of support from you all. She asked if I was lactose intolerant because lactose is an active ingredient in the Ibrance. I told her yes and I already take lactaid tablets when I have dairy. So Sam's club here I come to purchase a large box of it !

  • ABeautifulSunset
    ABeautifulSunset Member Posts: 600
    edited July 2015

    hmm...I did not know that about the lactose. I am also lactose intolerant, but don't usually take lactaid. I just refrain from dairy. I haven't had any digestive issues on Ibrance. You might want to hold off on all of that lactaid until you actually have an issue, as you might not.

    :)

    Stefanie

  • mscal02
    mscal02 Member Posts: 167
    edited July 2015

    Thanks Stefanie : My husband keeps a big box here because he is lactose intolerant too ! I'll see what happens with the first few doses.

  • mdillard04
    mdillard04 Member Posts: 83
    edited July 2015

    @Stefajoy... I too am seeking legal recourse!! Fingers crossed... I hope I get a favorable outcome. Yes, I am only on Ibrance+Femara and the once a month Zoladex shot... That's it. I am seeking a second opinion at the end of the month

  • ABeautifulSunset
    ABeautifulSunset Member Posts: 600
    edited July 2015

    Monika, I'm glad you are seeking a second opinion. It's not that I think the first one is wrong, I am just used to women going straight into the hard stuff knock it out,get sick, lose your hair kind of chemo stuff. Your doc may actually be a more modern thinker, in that the hope for the future is less toxicity, less surgery, better outcomes. Ibrance may just be your saving grace.

    Still, a second is a good idea.

    As far as your legal recourse, we chose a lawyer who not only specialized in medical malpractice, but specifically breast cancer with a strong emphasis on delayed diagnosis. He has almost never lost a case. We had to drive an hour to see him, twice... Not so bad. Was totally worth it. You can PM me if you want more detail.

    Try not to freak out. I know that is easier said than done. You are probably still whirling from the news. I'm four years out at stage 4. I feel fine and, except for lots of doctors appointments (and a few reconstructive surgeries), my life feels pretty normal.

    Stefanie

  • car2tenn
    car2tenn Member Posts: 132
    edited July 2015

    lynwood, I so appreciate you..You are not in my business at all. I went to CVS and asked a pharmacist about what I was doing (piercing a 125 mg pill and shaking some out to make it a 100 mg pill). He said it only had to do with dosage. It would not hurt me in other ways and a that was what I wanted was to reduce dosage. In addition, I have waited all week and nothing has been approved. We have TriCare and it is supposed to be a last ditch approval...Ho Hum...no one has called . So I am so happy I have had the Ibrance to mutilate down to what I think Might be 100 mg. Holly: I am astounded at TM's going down and progression happening..It just shows we do not have the full information on Ibrance....oh dear. Carolyn from Music City

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

    Carolyn, I am so sorry that you have to wait so long for an important medication like this! Thanks for understanding my concern. I hope you get approval soon

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