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23 months on Ibrance now am taking 1 month off

Lamho1 profile image
17 Replies

I am on chemo vacation! 23 mo. On Ibrance/Letrozole combo for Stage IV mbc to lymph nodes, lungs. I still take 2.5 mg of letrozole daily My counts are normal but I had a severe Rash & frequent heavy fatigue episodes. My dosage was 75mg. How long could I be off before restarting Ibrance? I'm hoping to stay off for 2 to 3 months to feel good for awhile. Anyone else take a break from Ibrance for a month or more than resume to their daily dosage?

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Lamho1
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equavel profile image
equavel

Am presently on a 3 week break from Ibrance due to low neutrophils and platelets. I am continuing letrozole

Interestingly I have considerably more joint pain and increased “dripping” hot flashes ... mist unpleasant ... though I do not miss the tiredness that accompanied Ibrance

blms profile image
blms in reply toequavel

Did your oncologist say how long he was comfortable with your break? Why did he or she say you should/could take a break?

I think it is a great idea and am glad to hear someone say this!

equavel profile image
equavel in reply toblms

The reason for the break is low neutrophils and platelets

blms profile image
blms in reply toequavel

So they got even lower after 23 months than during the process?

equavel profile image
equavel in reply toblms

No

They fit lower after 9 months

Lamho1 profile image
Lamho1 in reply toequavel

I'm in remission for 3 mo.now

My wbc counts were 1.4 and my platlets normal range. He gave me a break due to hives/ rash on chest and stomach for 3 mo. & extreme fatigue. Now on light ant-depressant

And itchy rash is gone. I felt better after 10 days off Ibrance, less bloated too. Still on letrozole. Labs on 9/12 & will see what's next for now I'm happy!!!

Terilyn12 profile image
Terilyn12 in reply toLamho1

What do you mean by remission?

Lamho1 profile image
Lamho1 in reply toblms

My oncologist said we'll try 1 month see what labs show before resuming Ibrance 75mg. It feels great to have a relief of toxicity that comes from the Ibrance! Labs 9/12. I'll post the next step my oncologist recommends. He did say I'm tolerating the Ibrance well & I'm in remission

Teddielottie profile image
Teddielottie in reply toLamho1

How have you got on with the break? x

Lamho1 profile image
Lamho1 in reply toTeddielottie

I feel amazing! It'll be 2 mo. Off of Ibrance on Oct.16th st which time I'll restart the Ibrance/letrozole. Hopefully i'll tolerate it fine. Ibrance is a bonus since I'm in remission.

25 mo living with mbc & counting

RubyRedBear profile image
RubyRedBear

First, I was on Letrozole & Ibramce, started Jan 2016 to treat Stage 4 MBC. Immediately, I was in remission; hair loss significantly but blood work perfect. 10 months later, severe pain bones, joints & muscles. Long story short, Letrozole to blame!!! Then, I was approved for Faslodex to replace the Letrozole. I’ve been in this chemo regimen 3 full years now. Tired, yes, weight gain, yes 25 lbs, flakey skin, yes - a lot!, hair loss, yes - very thin!, bone pain, yes - pain pills, anxiety, yes - lots!!! BUT, I’m alive, thank GOD. I’m a widow with no home support or financial help. No one has EVER suggested I take a break from the Ibrance or Faslodex; in fact my Oncologist said I’d be on this schedule FOREVER! All my PET scans are clear since March 2016. My platelets were high once so I’m taking Fish Oil and Flaxseed and this brought the platelets back to normal range. All other blood tests and CTs are fine. My MBC was extremely aggressive and I’m convinced if I stop the medication, remission would promptly end. Previously, when the Letrozole was discontinued, they said I was safe for 3 weeks. May I add, I feel bad, lifeless almost, depressed, nervous, but not hopeless! This is a life changer for sure! No one in my family has/had breast cancer. I am post menopausal, hysterectomy at age 62. I’m 66 now. Sooo bewildered WHY I have HR+ but they say estrogen is produced still after hysterectomies. Mine was stored in my right breast and spread to lymph nodes and left lung. Needless to say, I was in BIG trouble! That was 3 years ago... fingers crossed and prayers said, a cure is found. I’d SOOO LOVE to enjoy my life without the torment of endless worry. Only YOU can understand. PS- I see Ibrance tv commercials daily, sometimes hourly and don’t you know these actors look nothing like me!!! It’s not that easy, is it?!!! Maybe the Drs will find a cure, who knows... blessings to all here, you are not alone.

RubyRedBear profile image
RubyRedBear in reply toRubyRedBear

Me again, RRB, forgot to mention, I’m taking vitamin D & calcium for Osteopenia. Dr said NO to Tumeric supplements and Apple Cider Vinegar (for weight loss)... just exercise, but I have no energy and sadly not much appetite. Hope this helps gals

MMMP profile image
MMMP in reply toRubyRedBear

Can’t stand all the commercials- I’m Triple Negative and those drugs are not even on my list of options- let me tell you what they can do with their “new normal”!!

Felish48 profile image
Felish48

I just started Ibrance 125mg and Letrozole feel awful physically and mentally...😭😭😭

oysterdome profile image
oysterdome

Your last post says six months ago (Nov., 2018?) and resuming.

Would like a report on status since time off and resumption.

Wishing you well.

Red1246 profile image
Red1246

Yes, I had 5 weeks off ibrance 100 mg over the recent holidays. Low wbc had me on “house arrest”with a restricted diet for neutropenia and I became quite depressed. I also wanted to be able to have a brief holiday and celebrate my husband’s birthday while away without food restrictions and considerable fatigue.

My recent scan had shown no further metastasis so the onco nurse arranged for this schedule change.

I began a new ibrance cycle 1/17 and will have blood work done 2/13 to see what the count is. I’ve felt less than the usual amount of fatigue but Letrozole also causes that and I continued taking this so I wasn’t completely energized.

Good luck to you - how nice to be off Ibrance that long! Sending all best wishes for your break. Red

KimberlyB40 profile image
KimberlyB40

Hi was wondering if you ever took that break, and what happened. I google taking a break on ibrance and found this post. Thanks

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