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Ibrance (Palbociclib)

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Comments

  • Hummingbird4
    Hummingbird4 Member Posts: 220
    edited November 2015

    Golfingirl - welcome to the Ibrance thread. Sorry to hear that you might have had progression. Hoping Ibrance works for you for a very long time. Good Luck with your bloodwork on Thursday.

  • Springlakegirl
    Springlakegirl Member Posts: 10
    edited November 2015

    I have not been on this thread much, but have been on Ibrance/Letrozole for about 8 months now (although I took one month off to feel good for a marathon, and I usually have had to take 2 weeks off between cycles for low WBC count.) I had a PET scan after my first 3 months, and it showed a slight decrease in size of my two tumors (in bone). We waited for 5 months, and I just had another scan last week. This time I still just have those two spots, and one is the same size, but one is slightly increased in size. I don't have tumor markers in my blood, so that is no help to me. I meet with my oncologist tomorrow to discuss. She indicated that she is not sure if this means I need to move on to another drug, or if we wait a few more months and do another PET to see what is happening. What do you ladies think? And if I need to move on, what is new and exciting for my next treatment? ;)

  • Springlakegirl
    Springlakegirl Member Posts: 10
    edited November 2015

    Update, I spoke with my oncologist's nurse on the phone just now, and they are thinking I do need to change to a new drug, but they don't know what yet. We will discuss tomorrow. Is there anything out there that is more targeted, kind of like Ibrance, so that I can continue to feel well? If not, what is another good option? I have only done Tamoxefin and Anastrozole in the past, so I know there are still other options, but I don't know what other women like?


  • mimipickle
    mimipickle Member Posts: 160
    edited November 2015

    Springlakegirl--I am on Ibrance/Femara as my only ever treatment. Stage iv de novo in June. I had a spine MRi just be starting treatment. Four months later I had my second MRI and the mets that were largest in June looked like they had slight improvement but some smaller ones looked more active. So mixed results I guess. My MO said we will scan again in 3 months. He doesn't use TMs. I did look at my Alkaline Phosphatase on my blood work reports (4 of them) one before tx started and 3 since, and the Alk Pho has decreased 5-8 points each time. There was some discussion up thread about declining Alk Pho levels are a sign of declining bone met activity. So, I am focusing on that as positive news for me. When I posted about my mixed results scan several ladies told me that had happened to them and the general consensus was that bone mets are craazzy and hard to read.

    My MO doesn't use PET scans for me just MRI's. Trying to spare me radiation I guess. Do you have copies of your blood work?

  • Springlakegirl
    Springlakegirl Member Posts: 10
    edited November 2015

    Update, I spoke with my oncologist's nurse on the phone just now, and they are thinking I do need to change to a new drug, but they don't know what yet. We will discuss tomorrow. Is there anything out there that is more targeted, kind of like Ibrance, so that I can continue to feel well? If not, what is another good option? I have only done Tamoxefin and Anastrozole in the past, so I know there are still other options, but I don't know what other women like?


  • sandilee
    sandilee Member Posts: 436
    edited November 2015

    springlakegirl- You are obviously ER+, so there are still options before chemo. I had 3 1/2 pain free years on Faslodex. I could have stayed on it happily forever had I not had progression. But over 3 years, I guess I shouldn't complain. Very few side effects for most women, it seems. It's an injection that you receive once a month, so quick and easy. If you have a good nurse, you can hardly feel the shots. Good luck!

  • 513mgv
    513mgv Member Posts: 54
    edited November 2015

    now on my 4th cycle of ibrance 125 mg, I've lost a little hair and get small nose bleeds at end of cycle. All other side effects went away. Tm stable at 52. Good luck to all. Marilyn

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

    Thanks Hummingbird, it was good news for me today! TM's have been cut in half, tumors have shrunk "substantially" and all metabolic activity has decreased. She said the liver enzymes elevation could be a number of things including meds but just to be safe I am going to see a gastrointerologist. But we are not switching meds. Yay! All in all a very good day. The relief is indescribable.....Hope you are well as well and best to all. Moissey, So sorry you have to wait longer, that is the worst. We'll be thinking of you. Welcome golfingirl. So far so good with me on this combo. I have experienced several SE's but they have changed through each cycle which is weird. None of them have lasted very long or been severe at all. I do notice by the end of the Ibrance cycle my fatigue is the worst but not terrible. I hope this combo works for all of us for a very long time....

  • Hummingbird4
    Hummingbird4 Member Posts: 220
    edited November 2015

    Artist - Yeah!!!!!!!!! So happy to hear your fantastic results!! Do something fun - after that anxiety of scans, it's good to focus now on something you really enjoy. Yes - That is tremendous relief!!!

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

    Hummingbird, I am going to make some jewelry and play my guitar! Something that caught me of guard today was how emotional my DH got when he heard this news. He is so good at being the strong rock of support for me but I know him well enough to know he is experiencing extreme stress too. He had a little emotional break down for a few minutes, which reminds me that I need to take care of him too.

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

    Artist, GREAT news for you! I know what you mean about the relief, it really is a heavy load we carry, but waiting for scan results is the worst! Hope you do something to celebrate! Golfingirl, welcome! Lots of great information and support here

  • jobur
    jobur Member Posts: 494
    edited November 2015

    Springlakegirl, What Sandilee said. I started on Faslodex in April and added Ibrance in July. My last scan in July (before I started Ibrance) was my best so far. I was barely stable during 9 months on Anastrazole prior to 1st progression. Seems like some gals get years out of Faslodex alone, many with minimal or at least tolerable se's. Good luck on whatever is next for you, may it work well for a good long time.

    Welcome to Ibranceland Golfingirl! Best wishes on your first blood work.

    Artist, Congratulations on your good results! Give that DH an extra tight hug tonight. I'm afraid we sometimes forget how hard this is on our spouses.


  • moissy
    moissy Member Posts: 371
    edited November 2015

    Artist - So excited to hear your great results! That's fantastic! Sounds like you have one great hubby who loves you immensely!

  • Myra1211
    Myra1211 Member Posts: 532
    edited November 2015

    Artist, congratulations on your scan results and being in a relationship with so much love. I too know what that's like! Myra.

  • Mama2twinsplus2
    Mama2twinsplus2 Member Posts: 98
    edited November 2015

    Hey ladies, I feel so confused with my recent results!! I am almost finished with my 3rd cycle of Ibrance/Letrazole and my onc has scheduled a PET for 11/23. She can manually palpate the mass in my breast and every month it has measured 7(mm I would assume???) well, on friday it was measuring 5x5, so obviously smaller, finally something good!!! Well, I just received a phone call with my tumor markers and they have once again gone up!! Started at 36, then 46, now 56. I am so confused and just now anxious for the PET. I just finally got to feel some relief and it only lasted 5 days!! If the mass has shrunk, the Ibrance should be working right!! No one told me menopause would make me so emotional lol!!

  • jobur
    jobur Member Posts: 494
    edited November 2015

    Tina,

    Regarding Medicare Part D and expensive therapies such as Ibrance, I happened on to this video on tips for open enrollment. Possibly of interest, Medicare Advantage Plans where drug coverage is part of the plan. Don't know a lot about this, just starting to try and educate myself as I will be eligible for Medicare in 2016.

    http://www.morningstar.com/cover/videocenter.aspx?id=721798

  • jobur
    jobur Member Posts: 494
    edited November 2015

    Mama2,

    Try and relax and wait for the scan & results. From what I read here, TMs can do funny things on this drug. I would think having a palpable mass that is shrinking would be the best indicator of your response to this treatment, and that sounds like it has been good. Is this your first tx? Remember, there are other treatments and a person may not respond to one, but the next one can work wonders.

    Yeah, menopause is a #itch. And this disease and it's treatment is an emotional roller coaster anyway. Hang in there!

  • Mama2twinsplus2
    Mama2twinsplus2 Member Posts: 98
    edited November 2015

    @Jobur, thanks for the encouraging words!! Yup, first tx, just dx 06/15 de novo with mets to the liver, so still trying to sort everything out in this new phase of my life!! hugs to everyone!!!

  • Myra1211
    Myra1211 Member Posts: 532
    edited November 2015

    Moma2, I am the queen of mixed Ibrance results! Feel good, TMs up, next TMs down, scans good, so good that MO reviewed with RO, TMs one up, one down. 2 weeks new PET scan so we shall see. That is why I named this experience Ibranceland. You never know where this roller coaster will go next. Hope that helps. Myra.

  • mimipickle
    mimipickle Member Posts: 160
    edited November 2015

    Mama2, I'm like you (de novo-6/15) and I am on my 6th cycle and got mixed results (from an MRI a few weeks back) with my spine mets. My MO said this should work for you so we are sticking with it. My MO does not use TMs. I had a mastectomy before I knew I was stage iv so no tumor to monitor. You couldn't feel it anyway. i think that yours shrinking is great feedback :)

    We've checked into Ibranceland and we are staying put.

    Ellen

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

    Yes Mama, My Tm's went up at the end of the 2nd cycle although my breast tumor shrunk quite a bit. Now I had high liver enzymes but the scans were good and TM's are way down. Like Myra says , Ibrance roller coaster. Although it is hard, also listen to Jobur that there are many places to go besides this med regiman. So many of these ladies have been through years and many treatments that work for a long time. I am the worst person to advise not panicking over a "bad" test reading. But just learned my first lesson that is is not necessarily bad news! Thanks all you ladies for the happy dances and cheers. I makes my day. Yep, my DH is a keeper!

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

    artist,

    So great to hear you got positive news! Also glad to hear you husband is so supportive, it makes such a difference to have such support, we all need it. My hubby is bringing home a movie tonight to lift my spirits (in bed a lot lately with spine pain). These seemingly small things can make such a big difference.

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

    Thanks Holly, I am so sorry your spine is giving you so much trouble. It sucks when you can't do the "regular" things. How people do this without a supportive hubby just makes me want to cry. Let me know if the movie is good!

  • Hummingbird4
    Hummingbird4 Member Posts: 220
    edited November 2015

    Holly - so sorry to hear that you have been having pain. I can't remember - have you moved on to Xeloda? Or are you still on Ibrance? Sometimes things move quickly here on this thread - I try to keep up. Sending hugs and hoping your pain subsides. Enjoy your movie tonight!

  • Springlakegirl
    Springlakegirl Member Posts: 10
    edited November 2015

    So I met with my onc today and we decided on Afinitor/Aromasin (not sure if I'm spelling correctly, but you know what I mean!) ;) I feel good about it, although I wish I had been able to stay on Palbociclib longer, but not much I can do about that. What side effects have you ladies had on these drugs?

  • Hummingbird4
    Hummingbird4 Member Posts: 220
    edited November 2015

    Springlakegirl - I was on the A/A combo for 5 months, 10mg per day, when I was first diagnosed metastatic. I had the common se of rash, a few mouth sores, fatigue. But in my 6th month I became short of breath due to a bad inflammation in my lungs from the drugs. I had to stop the treatment. That se is more rare, but can become very serious. I don't mean to frighten you, but I want to be honest. On the whole - before that happened - it wasn't too bad. There is a great thread on afinitor/aromasin that can give you more information. Good luck. Wishing you a long success on A/A.

  • Springlakegirl
    Springlakegirl Member Posts: 10
    edited November 2015

    Thanks Hummingbird! I'll look it up. :) If anyone else has experience with A/A, please let me know. I'll check out the other thread too. Thanks everyone!

  • jobur
    jobur Member Posts: 494
    edited November 2015

    Good luck with A/A Springlakegirl. That will likely be my next tx. Let us know how it goes.

    Hummingbird, how are you and Mom doing?

    Holly, Sorry you are hurting, hope the movie with hubby made you feel a little better.

    I just got results from my first PET since starting Ibrance in August. Rad report says minimal residual metastatic disease with highest SUV 3.07! Xgeva and Fas shots went well and behind me (literally!) for another month. Happy dance time.

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

    I must say that everyone on this thread is such an amazing source of help, support, and information. I'm so sorry I had to leave you-but not really, I keep checking back to see how everyone is doing!!!!

    Babs

  • junieb
    junieb Member Posts: 945
    edited November 2015

    I started the IBrance 125 mg dose 2 months ago and took it for 14 days, but had to stop it because my white cell count fell too low. Then the next round I took the 100 mg dose for 14 days and had to stop that as well, again for a too low white cell count. During the second round and beyond I have experienced significant nausea and even had to visit the E.R. for the nausea, stomach pain & dehydration.

    I had been using Zofran for the nausea, but it had no effect. Then I tried Phenergan, but it is too sedating, so my oncologist has now prescribed Marinol. And oh geez! is that expensive. Will be calling manufacturer of the Marinol for patient assistance in the morning.

    Next week I'll start the 75 mg dose and hope things will go better this time.