Ibrance (Palbociclib)

18687899192945

Comments

  • moderators
    moderators Posts: 8,643
    edited November 2015
    Dear Jazzy, welcome to Breastcancer.org! We hope you find the information and support you're seeking here in this wonderful community.
    Until other members post with their personal experiences around the symptoms you're mentioning, here is an article from our main site that you may find helpful: 10 Ways to Manage Breast Cancer Treatment-Related Nausea

    Let us know how it goes next week with the new dose!
    Best,
    The mods
  • Myra1211
    Myra1211 Member Posts: 532
    edited November 2015

    Hooray jobur!!!!! Doing the happy dance with you!!!! Myra.

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

    it is wonderfully reassuring to continue to hear of good responses on Ibrance. I feel for those who are struggling with SE and pain and less positive results. I'll have my second scan in about a month. TM went up a tiny bit last month, but MO considered it "stable."

    Has anyone had a conversation with your doctor about the MCV count? Mine just keeps rising. All other counts are acceptable. I'm not sure I understand MCV. I know it's related to anemia. Info??

    Thanks to all for information and support. What an amazing group of women! So positive and inspiring

  • moissy
    moissy Member Posts: 371
    edited November 2015

    Welcome to all the new folks on the thread!

    Artist and Jobur -So glad to hear your good scan news!

    Babs - Great to hear from you. We love it that you are still tracking here! Were you able to connect with anyone else who is doing the same trial as you?

    Jazzy - Sorry to hear you have suffered so many side effects. What are you taking with Ibrance - Faslodex or Femara? I've had to drop my Ibrance dosage down also. I've had fewer side effects on the lower dosage. Hope they are able to get your nausea under control.

  • masonsmawmaw
    masonsmawmaw Member Posts: 119
    edited November 2015

    Hi Ladies! Hope all of you are doing well :) Have a quick question about TM's. My initial TM was 238, second one was 202 and now I'm down to 165. This is for the CA 27-29. Although I'm very happy to see that my number is going down, what does it mean in general to have a "higher' number? I'm midway through my 2nd cycle of Ibrance and also on Faslodex. Has anyone else experienced nose sores? Also, seem to be losing my sense of taste....

    Labs in a couple of hours...wish me luck!!

  • Hummingbird4
    Hummingbird4 Member Posts: 220
    edited November 2015

    jobur - Yes it certainly is happy dance time!!! That is fantastic news!! So glad to hear the wonderful results! I am doing ok, and my Mom has surgery scheduled for Monday to remove additional lymph nodes for biopsy to see if she definitely has lymphoma on top of the bc which we know she has. Thank you for asking and thinking of us.

    Babs - please keep checking in here. Let us know how you are doing on your trial. That trial was offered to me last year and I chose another, but I'm wondering if it still may be an option for me after Ibrance. I saw somewhere that you mentioned that the drug is similar to Xeloda but with less se, if I understood that correctly? If so, that sounds like a great alternative to Xeloda if the trial is showing similar effectiveness.

    Kaption - no, my onc doesn't mention MCV so I'm not aware of it.

    Jazzy - wishing you luck on the lowered dose. Hopefully you will feel a lot better on it.

    masonsmawmaw - good luck on your labs. Great that your ™ number has been decreasing.

  • buras54
    buras54 Member Posts: 17
    edited November 2015

    Hi Ladies: I started two weeks ago on Ibrance and Femara. Tuesday was my two week mark and my wbc is 2700. My doctor is ordering blood work again on Friday because he wants to make sure I don't bottom out over the weekend. So far not to bad. I have diarrhea and my hands itch and if that is all I have I'm good with that. Just came off of Halavan for 5 months and my big tumor in my live grew a little bit and 2 more little spots popped out while my tumor markers were going down the whole time. I have lost all faith in those darn tumor markers test now. My doctor said well there are not 100%. Well we know that now!! I was Stage 1, grade 2 IDC in left breast and had double mastectomy with reconstructive surgery. 1 bone met in 2012 and 1 liver met. Can't seem to get rid of the darn thing! It keeps coming back. Hopefully this drug will work.

  • junieb
    junieb Member Posts: 945
    edited November 2015

    Moissy, Thanks for the support. I am hoping things go better as well. MO called today to tell me my TM are 25 which I know is still within the normal range, but is higher than last time. It was 20 then.

    I'm not sure what has caused the increase. It just makes me nervous. I have a Bone scan scheduled for Nov. 19th., so we'll see.

    Also, for the sake of a little background on myself, my initial BC was in 1991 at the age of 31 and I was 23 years out when I was diagnosed with the mets. I had also had primary bone cancer at age 40.

    I'm taking the Ibrance with Faslodex.

  • hopeful34
    hopeful34 Member Posts: 522
    edited November 2015

    I haven't been on in quite a while and I have a couple questions. My onc found that the arimidex was not suppressing my estrogen through some labs. He switched me back to Tamoxifen. First off, does anyone here take Tamoxifen with Ibrance? Also, I am going to the gynecologist tomorrow to discuss an oopherectomy. Does anyone know if you have your ovaries removed, do you still have to take estrogen blockers with the Ibrance? Sorry for all of the questions. Thank you.

  • moissy
    moissy Member Posts: 371
    edited November 2015

    Hi Hopeful - Welcome back! I've had lots of times on and off the boards throughout the years as well. I had an ooph so that I could take an aromatase inhibitor and was on Arimidex for 5 years. At this point, I think most people taking Ibrance are either taking Femara or Faslodex with it because that's what the two completed trials so far were conducted with....Although there is some speculative discussion about potentially using it in combination with additional drugs.

    If you have an an ooph, no, you should not need any additional estrogen blocker.

    Not sure what test was done for you, but possibly you could inquire about Femara. It has been shown to be more effective than Arimidex although they both are aromatase inhibitors, so perhaps you need a different class of drug entirely.

    As far as the ooph, I had it done laparoscopically with very quick recovery and minimal side effects......apart from the exciting venture into menopause :) Hope your appointment goes well tomorrow.

  • hopeful34
    hopeful34 Member Posts: 522
    edited November 2015

    Thank you Moissy. He ran labs to see what my hormone levels were because I started having a period again. I am having monthly Lupron injections as well. Anyway, it showed that I was no where near menopause, so he is worried. My tumor markers are stable, but since I am ER/PR+ he wants to make sure I go into menopause ASAP. Thanks again for all of your help.

  • moissy
    moissy Member Posts: 371
    edited November 2015

    Hopeful - If your ovaries were still functioning and were not suppressed at the time with Lupron, then the Arimidex would not have been able to be effective because you would have still been considered premenopausal. So an aromatase inhibitor possibly may still be a viable option for you.

    I had a not exactly similar experience, but....after I had chemo for my early stage cancer, my surgeon and onc both said no way would my ovaries still be functional, and they discouraged me from getting the ooph. My ob-gyn said it was definitely a reasonable option, and she did the surgery. It turned out my ovaries were still in great shape following chemo when they were removed and were ready to start giving me periods and estrogen again. So the ooph was definitely the right choice for me. I wanted to be able to take the Arimidex. But as I mentioned, later studies have shown Femara to be more effective than Arimidex, so worth an ask about it. Good luck.

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

    Great news Jobur! Total happy dance! Babs, I am glad you are checking in. When someone drops off of a thread I try and catch up but sometimes it is hard. How is the trial going? Jazzy, I hope they can figure out how to keep you on this med. Staying hydrated is critical. MasonsMaw, yes I have had some mild nose sores and sort of increased mucus. yuch.... Thanks Moissy!! Hummingbird, glad to here you and your Mom are doing OK and wishing the best on her surgery. Buras, I hope it works too, the more success stories the better!

  • KristinB577
    KristinB577 Member Posts: 4
    edited November 2015

    Just completed week 1 of Femera/Ibrance and so far no side effects...when did you notice the nausea and other side effects setting in? I want to be prepared and I've heard that after the first week the side effects set in, so I'm getting nervous since this is my first round of any treatment. Although the pain from the bone mets has all but gone away so I see that as a good sign!

    Jobur I had my first Xgeva shot today in my arm and it hurt like hell. I kept it together until I got to the car and then had a meltdown.


  • ShetlandPony
    ShetlandPony Member Posts: 3,063
    edited November 2015

    Hopeful, as I understand it, Ibrance targets a pathway that cancer uses to resist hormone therapy. So you use Faslodex or the aromatase inhibitor letrozole/Femara to starve the cancer cells of estrogen, and then you take Ibrance to prevent the cancer cells from becoming resistant to it so soon. But you have to be post-menopausal or have your ovaries suppressed to use these. It sounds like the lupron was not suppressing your ovaries the way it should, so you will have an ooph instead of lupron. That will make you post-menopausal for sure.

    I have not seen anything about using Ibrance with tamoxifen. I think tamoxifen is a stop-gap until you can have the ooph and use an aromatase inhibitor, which is a more aggressive treatment than tamoxifen. One good thing: you won't have to get the lupron shots anymore. My gynecologist said she thought lupron had its own side effects, apart from the menopausal symptoms.

    (Arimidex/anastrozle and Aromasin/exemestane are also aromatase inhibitors.)

  • ShetlandPony
    ShetlandPony Member Posts: 3,063
    edited November 2015

    Hi, Kristin. That's great that your bone pain has already improved so much. Many of us notice that our side effects get more noticeable during week three. But the common one seems to be fatigue. I would say nausea is not so common. It's quite possible you will not have much in the way of side effects. So keep calm and carry on.

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

    Jobur-yes, do the happy dance-I hope your results stay positive for a looong time!

    Moissy-I haven't been able to connect with anyone else in the trial. I did start a thread about the GDC 0810 hoping someone else would show up. I might just ask my MO to hook me up with someone else that's in the trial at MSKCC-if they're even allowed to do that!

    Hummingbird-I'm not 100% sure but my understanding of the GDC 0810 is that it is in lieu of Xeloda but that definitely is on my list of questions for my next visit to my MO at the end of the month

    Glad you and your Mom are doing ok. I hope she has a very easy time of it on Monday-let us know!!!

    Hopeful-I had a hysterectomy 17 years ago (prophylactically) when my sister had ovarian cancer. And, my BC is heavy ER + and PR+ so initially I was on anastrozole until I had progression. One would have thought that not having my ovaries would have precluded that from being the case!

    Artistathea-Thus far I'm doing fine on the trial. I do get queasy and tired and I am losing more hair than normal but its all very manageable. It's just lonely without having others on the same medication to talk to.

    By any chance does anyone know a discussion board like this for those with multiple myeloma? My daughter's best friend's mom was diagnosed with this about 4 months ago. They live in Dubai where the word cancer is still hush hush and she's having a really hard time emotionally. She came to NY this week for a second opinion at MSKCC. She could not believe how much more upbeat the drs are there! We had drinks (water) last night and she said that it was great to talk to someone else dealing with cancer-it gave her more hope. I told her about this web site and how much it means to me-I really think she would benefit if there was something similar for her.

    Thanks all!!!!

    Babs


  • jobur
    jobur Member Posts: 494
    edited November 2015

    Thanks to everyone who happy danced with me. Reading Babs post above makes me all the more grateful for this forum and all of you. I can't imagine going through the ups and downs of stage IV without you ladies.

    KristinB, I'm sorry your 1st xgeva shot hurt so much. You might try getting it in the tummy next time, I think there are less nerves there. Also, make sure it is at room temperature and your nurse gives it slowly. Looks like you are new to this dx? It's really hard at first, but eventually you will get used to a "new normal" and things get a little easier.

    Hummingbird, I'm sorry your mom has to have surgery Monday, but hope it will help them figure out what is going on. I had to go back a couple of pages to refresh my memory. I'm glad she feels comfortable with her onc. That helps a lot. Big gentle hugs to both of you.

    Kaption, here is a site I found with a fairly good explanation of red blood cell stuff. I have low mchc and very high rdw. My mo doesn't seem too concerned when I have pointed it out.

    http://www.labtesthelp.com/test/Red_Blood_Cell_Indices

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

    KristinB. My nurse also gave me the Xgeva in my stomach- it was at room temp and I had no discomfort. Maybe try that next time

    Babs

  • Myra1211
    Myra1211 Member Posts: 532
    edited November 2015

    Kristin, I also get a warmed Xgeva shot in my stomach. Just a quick prick, no pain. Myra

  • Max_otto
    Max_otto Member Posts: 124
    edited November 2015
    Hello ladies,
    This week from my bc garden.
    Roses first, tumor markers consistently decreasing and scan results are ,pleural mets stable, no evidence of mets in chest , abdomen or pelvis, great news so far, and then the thorns, blood clots in lungs. I was returning home from the scan when the oncologist called and told me to go to emergency immediately , I was treated and admitted briefly and I'm now on Lovenox injections. The cause of my blood clots is unknown, cancer patients are more suspectible to clots and in my case there are several possibilities as to the cause. However, Palbociclib is not thought to be the cause and I will continue with my 75mg dosage as it appears to be working from results of the scan and TM's.
    An unexpected bump along the way but all in all, I'm happy with the results.
    Pay attention to shortness of breath and discomfort within the chest, I thought the symptoms were from my pleural mets, but it was from the clots. I was fortunate in that the clots were in the small vessels. Hugs to all.
    Kathy
  • ShetlandPony
    ShetlandPony Member Posts: 3,063
    edited November 2015

    Max, do they say that Ibrance was not the cause of the clots because they were in the small vessels rather than in the arteries of the lungs?

  • mcsushi
    mcsushi Member Posts: 71
    edited November 2015

    Hey gang! Just checking in. I had my labs checked today before restarting my next cycle. Unfortunately, my ANC is way too low even after a week off. I'm going to have the labs rechecked Monday when I go in for my dreaded lupron shot and hopefully I'll be cleared to start at 75mg. It's been such a headache working out which dose I can tolerate, but least my side effects are otherwise very mild and completely doable. I did get a bit of good news too. My tms are going down. CA2729 was 729 and is down to 642 and CA153 is steady in the 520's. I think the plan is to have scans after this next cycle. I'll be hoping for an early Christmas present!

    Max Otto: I'm sorry to hear you have to deal with this. I had a PE back in August. It's what lead to diagnosing my recurrence. Our dxs sound similar. I now take 150mg lovenox injections daily. It's not that bad and I've gotten pretty good at the self injections. Glad to hear you're otherwise doing well with the ibrance and seeing some positive results. Hugs to all!

  • Max_otto
    Max_otto Member Posts: 124
    edited November 2015
    Shetland,
    My understanding is no connection but the cause is unknown.

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

    jobur, thank you! I've also been told it is sort of a balance with the wbc. But, my wbc counts have been good and stable, while MCV and MCHC keep rising. I'll ask again next week

    Yes, a happy dance for you

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

    Max otto, Do they see blood clots on scans are do you have to get a chest XRay?

  • mcsushi
    mcsushi Member Posts: 71
    edited November 2015

    artist: PE's are found on CT's or VQ scans. Blood clots don't show up on xrays.

  • ninaca
    ninaca Member Posts: 232
    edited November 2015

    Tina, I am on a Medicare Senior Advantage HMO and pay under $20 a month for my IBRANCE. Not sure how I am so lucky but glad drugs were covered when I needed them.

  • junieb
    junieb Member Posts: 945
    edited November 2015

    mcsushi - After reading your post, I'm feeling pretty silly for getting nervous that my TM went from 20 to 25. I had no idea other people were dealing with numbers like you've listed in your post. All of this is so new to me. I'm glad you're numbers are decreasing.


  • tina2
    tina2 Member Posts: 758
    edited November 2015

    Wow, Nina. That's great! I have regular Medicare and can't do an HMO if I want to stay with my current oncologist and PCP. I have checked through the Rx plans available in my state, and cannot locate any that would charge me less than 27% of the cost of Ibrance once I'm at the "catastrophic coverage" level. This works out to be nearly $800 per month.

    Maybe there will be a way to get around this if and when the time comes. Needless to say, I'm crossing my fingers and hoping I can remain on Faslodex forever.

    In the meantime, I'm going to try to stop fretting about the cost of a treatment I may never need, and focus on things I can actually (kinda-sorta) control!

    Tina