Ibrance with fluvestrant: I haven't... - SHARE Metastatic ...

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Ibrance with fluvestrant

Aelgersma profile image
16 Replies

I haven't posted much here but continue to read, seeking hope. I finished my harsh chemo 5 weeks ago. As horrible as it was it is scary to let go as it was moving things in the right direction. I started ibrance and fluvestrant yesterday after hours and hours of tests and scans. Can anyone share with me, side effects, results, whatever you have. I would appreciate it. I'm like a cat on a hot tin roof . (I have bone mets with extensive liver mets)

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Aelgersma profile image
Aelgersma
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16 Replies
Tap321 profile image
Tap321

Much less side effects for me with ibrance. Just low WBC. First cycle was hardest and then got much easier. Sometimes tired. Wishing you the very best on this treatment.

Aelgersma profile image
Aelgersma in reply to Tap321

How long have you been taking it? Is it working? Thanks

Ninfa1956 profile image
Ninfa1956 in reply to Aelgersma

I have been taking since September 2015 and yes it's working. Please stay positive

tessibop2002 profile image
tessibop2002

I"ve been on Ibrance for exactly one year, very little side effects, a little tiredness and a little diareah,but I've been on it for a year and its keeping my cancer stable, im also on faslodex shots once a month, thats a estrogen blocker because my cancer is estrogen related, best of luck to ya!

Aelgersma profile image
Aelgersma

Same regimen I started. Thank you for the reply. Makes me feel hopeful! Have a blessed Easter!

daf10 profile image
daf10

Glad that you reached out and posted Ibrance seems to be quite effective Although I was not stage IV, as manager of the breast helpline, I have heard so from both volunteers here and helpline callers. Best of luck with your treatment and please continue to post Remember we are here to support you

Tap321 profile image
Tap321

I have been on ibrance since last January. I take it with letrozole. I had a walnut sixed liver tumor it shrunk to 1/3rd it's size. It brought my tumor markers down to normal level. It is an amazing drug.

MissyAnn68 profile image
MissyAnn68

I have been on this combo since january. The first was hardest because it was too strong. I had neutropenia (absolute neutrophils were 400 and wbc 1.2) and i caught the horrific flu that went around. Ended up dehydrated and with pneumonia in the hospital. I had many side effects like small mouth sores, hair was falling out more than usual, weight loss, diarhea, nausea, etc.

The Onc lowered my dose to 100 and i have done so much better! My side effects are mainly my counts are still low, some insomnia, and i have fatigue like crazy. She did agree to lower my dose again and i will start 75's next week in hopes to not be so tired and weak.

Partia profile image
Partia

I don't know about fulvestrant but I take Ibrance with letrozole (femara) I have bone mets and small nodules in lungs. I really don't feel too bad off of it at all. My joints get stiff sometimes but I think that's old age (57 lol)

Meadesmith profile image
Meadesmith in reply to Partia

i have taken ibrance and letrazole for 22 months. the aches and pains are side effects...definitely. all bone mets are gone. treat the side effects. stretch every day. get lots of cardio, as much as you can. take pain relievers.

Partia profile image
Partia

I think I heard you can get peeling hands and feet with fluvestrant/faslodex. But I haven't had to take it yet so not sure. Best wishes dear.

Mariannem profile image
Mariannem

First couple of months can be rough due to the anemia (low red blood cell count) and low white blood cell count you may experience. It took 3 rounds and numerous blood draws to find the right dose for me. I ended up on the 100 mg dose. Over time it does thin out your hair. Good luck with this combo it is relatively easy to be once you find the dose for you.

Meadesmith profile image
Meadesmith in reply to Mariannem

low counts are common, mine get as low as 700 but come back up after a week. Remember to eat really well, lots of protien and fruits and veg. give up bread, pasta and sweets. get lots of exercise, cardio and stretching.

KarenHale profile image
KarenHale

I have mbc with mets to the bones and stomach. I was diagnosed in December 2016. I did not receive chemo or radiation. I have been on ibrance and letrozole since December 2016. The only side effects I get are hot flashes and I get very tired by the end of the day. The cancer has shrunk and my stomach feels much better. My tumer markers have gone way down. The medicine is fairly new, but I'm hoping to be on it for a long time. God is Good!!

carolannjohnson profile image
carolannjohnson

I just finished my first 21 days of Ibrance and feel great!! Can't believe I am sick. Good luck and God bless

Klamato profile image
Klamato

Hello, I have MBC too and have not had chemo, but received 2 opinions from Dana Faber in Boston ans Upstate Cancer Center in my home town of Syracuse. Both institutions agree on my treatment with Ibrance and fulvestrant. I have been on this regime for 3 months and had 14 sessions of radiation on tumors in my spine. My cancer is multiple lesions in the liver and spine. I have tolerated this regime very well with a few side effects, (i.e., watering and itchy eyes, some stiffness and bone ache, a small amount of nausea and a little tiredness.). I really can't complain! I am waiting to get my scan sometime soon and that will tell the story. I know people have had excellent results with this treatment and I hope and pray that you and I will too. By the way, they have prescribed Zofran for nausea and it works wonders when I need it. Stay in touch. Kathy

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