Ibrance

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Sunshine57
Sunshine57 Member Posts: 25
edited May 2016 in Stage IV/Metastatic Breast Cancer ONLY

Looking for Ibrance friends

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  • car2tenn
    car2tenn Member Posts: 515
    edited July 2015

    Hey Sunshine,

    I have been on Ibrance since February. I am now on a stop waiting till my Neutrophils rise. Then I will start Ibrance 100 mg. I have had the first month on a coupon from Pfizer then two months on insurance followed by negotiations for this next month....My tumor markers plummeted with this med. Love it. Carolyn from Music City


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  • Sunshine57
    Sunshine57 Member Posts: 25
    edited July 2015

    Thank you Carolyn. Have you had any other side effects?  I am on my first cycle on day 14. Had fatigue today but not too bad. I am praying this works for awhile.  I have been on several hormone therapy drugs with is reoccorence in May.  This is my second chemo pill. Xeloda work about 6 months so now Ibrance. 

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  • dlb823
    dlb823 Member Posts: 9,430
    edited August 2015

    Hi, Sunshine. I will be starting Ibrance in just a few days. I'm also starting Faslodex tomorrow. I see you were on that last year. Did it not work for you?

    Carolyn, I love hearing that your TMs plummeted with Ibrance!!! Deanna


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  • ABeautifulSunset
    ABeautifulSunset Member Posts: 990
    edited August 2015

    Just finished third cycle. Blood work tomorrow.

    Fatigue has gotten better, but I'm a little lazier than I used to be, so the energy is still abit low.

    Just started getting some mouth sores. Not sure if it's related.

    PET later this month. More info then.

    Good luck on the drug

    Stefanie

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  • Sunshine57
    Sunshine57 Member Posts: 25
    edited August 2015

    Deanne, sorry it has taken so long to get back with you. I starting taking Ibrance on the 16th of July. After two weeks I had blood work and all my blood counts plumbed so I had to take a break. After a one week break my platelets have still not come back high enough to start again. Once my platelets come up to safe level of at least 75, I will start on a lower dose and hope my body can maintain good blood levels. I really didn't have any side effects but was only on it for two weeks.

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  • dlb823
    dlb823 Member Posts: 9,430
    edited August 2015

    Well, we're in the same boat, Sunshine. Had my labs today prior to my 2nd Faslodex injections, and my blood counts have also plummeted after just 12 days on Ibrance. My local onc didn't say anything about taking a break -- just that we would review in 2 weeks when I get Faslodex again. In the mean time, when I got home and looked at how screwed up all of my counts are, I emailed my UCLA onc for her input. A bit scary to be at 1,100 neutrophil (?) count after just 12 days, with total WBC going from 7.1 to 3.2 in that same 2 week period. Other than some minor gastro issues, I thought I was doing well with Ibrance. Today's lab results were a bit of a shock!

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  • Sunshine57
    Sunshine57 Member Posts: 25
    edited August 2015

    Hey elb. Your white count is VERY low. Youare at a high-risk for infection. How were your red blood counts and platelets?  I think it was my platelets that cause him to take me off for 10 days.  I also was on 100mg but now on 75mg.  What is your dose?. It does appear to be a great drug. Hang in there. 

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  • Sunshine57
    Sunshine57 Member Posts: 25
    edited August 2015

    Deanne when I took the Faslodex shot that was all I did. My ONC.only had me doing hormone therapy at first and that wasn't working by itself.  So we have tried two other chemo pills. Ibrance is my third and last chemo pill. I'm praying it works for awhile because I dread iv chemo.

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  • Sunshine57
    Sunshine57 Member Posts: 25
    edited August 2015

    Hey Stephanie how are things going since your last post? What dose are you taking? I started on 100mg and have had to go down to 75mg.  Have you had your tumor markers checked to see if the drug working? I did blood work today and things are doing mu

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  • Sunshine57
    Sunshine57 Member Posts: 25
    edited August 2015

    Hey Carolyn how are you doing? Are you still doing good on Ibrance? how is your blood work on the 100mg? Were you able to negotiate to get the medicine? Just checking on you. 

    Suzanna

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  • car2tenn
    car2tenn Member Posts: 515
    edited August 2015

    Suzanna,

    thank you for checking on me.

    I am back on Ibrance/ Femara . I feel great although I still awaken often at night due to Ibrance I believe. I have had to drop GEHA and go to Tri Care for Life in order to get my Rx paid for. I did have to take a little time off from Ibrance but not Femara. My white count is low but I am careful and do not have any skin wounds or something similar that could presage a huge infection. I am extremely grateful for Ibrance and completely understand that some day I will be on this board devastated that it has stopped working . However my oncologist is certain that a new category of meds will be available for me at this juncture. What do I do?

    I work 5 days a week. I eat no sugar but a balanced diet. And yes I have a cocktail every night with DH when we watch the news together. I am not afraid to ask for pain meds although I do not need them. Occasionally take a low dose xanax to get to sleep and have been on an antidepressant (Celexa) for many year since menopause and the death of a close relative happened at the same time. Thanks to all for keeping this thread going.

    Carolyn from Music City

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  • Sunshine57
    Sunshine57 Member Posts: 25
    edited August 2015

    Carolyn good to hear back from you.  I too only sleep about 3 or 4 hours a night.  Having alot if muscle and joint oain from the femara but managing. I go back to the doctor on the 28th. Praying thing continue to improve for all of us in the ibranceland.

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  • Sunshine57
    Sunshine57 Member Posts: 25
    edited August 2015

    Hey ladies. Not sure how many of you are aware that stage 4 cancer is a eligible for total disability on social security.  I may be in a different position than some of you but am currently receiving long term disability and social security. My job was very stressful and couldn't continue working. Just wanted to let you know it is an option for us.

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  • ABeautifulSunset
    ABeautifulSunset Member Posts: 990
    edited August 2015

    Sunshine. Thanks for asking. My TMs keep going up. Scan showed no progression but Onc think the TMs is a bad sign. We are going to watch it got the next two months. If they keep moving in the wrong direction, I'll move to Xeloda.

    In the meantime the SEs have really settled down here on my fourth cycle. I'm on 100 mgs.

    There is another very long and very active Ibrance thread with lots of great ladies and lots of information to get and to share. I hope you are lurking over there and just waiting to jump in.

    :)

    Stefanie


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  • Sunshine57
    Sunshine57 Member Posts: 25
    edited August 2015

    The link below is a large Ibrance forum. Check it out

    https://community.breastcancer.org/forum/8/topic/8...

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  • lissalou
    lissalou Member Posts: 66
    edited May 2016

    I started ibrance 125mg and femara 2.5 in December 2015. My tumor marker levels began dropping a little bit each month. However, this last month my tumor marker went up by 17 points. I am very frustrated since I was doing well with ibrance and femara. I have had the typical side effects, fatigue, loss of appetite, muscle, joint and bone pain. The only thing I have done differently this last month was spend a lot of time in the sun for 2 weeks. Anyone else have similar stories?

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  • zarovka
    zarovka Member Posts: 3,607
    edited May 2016

    Hi lissalou-

    The forum where everyone on Ibrance hangs out is over here:

    https://community.breastcancer.org/forum/8/topics/...

    I would post there in the future.

    The short answer is that hormone therapy (the letrozol side of the pair) is known to cause a metabolic flare in the first 3 or even 6 months. Symptoms include an increase in the level of cancer markers. My cancer markers went up in the first 3 months even while I was seeing and "objective response" (a reduction in tumor size). Scans are more useful than cancer markers for evaluating how treatment is working.

    That said a small rise in tumor markers like the one you had may mean nothing at all. Depending on where you are starting, your tumor could go up and down by that much if you tested them every day for a week.

    Breathe. You more than likely responding to the letrozol.

    >Z<

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