How long............?

[TuliS]

Hi all; I just started Ibrance this past Monday. Praise the Lord I haven't had any bad symptoms yet. Is it a given that the symptoms must happen? If yes how long before kicking in.

[Barbteeth]

Hi there

Many ladies on here have very few symptoms and are on the highest dose of Ibrance and continue their lives as normal

I’ve been on the 100 mg dose for over a year and feel reasonably ok...fatigue sometimes is a nuisance and hair is thinner so I have extensions ...anaemia is a problem so I sometimes have an iron infusion

Don’t start worrying or expecting side effects as you’re more likely to have them (mind over body)... just see how you go...if you’ve started on the high dose then it can be reduced...my oncologist has only one patient on the 125 mg dose

Hope helps

All the best

Barb xx

[TuliS in reply to Barbteeth]

TYVM

[Julie2233]

I had 18 rounds of ibrance 125mg and faslodex and had very few side effects. Fatigue for the first few months and low (but not worryingly so) blood counts.

I’ve just had to move to new meds because of progression and very sad because I got my life back whilst on the combination. I was on tamoxifen for a year prior to ibrance and had a lot of side effects which I found difficult to cope with.

[jstickrod in reply to Julie2233]

Julie, Similar story to my journey. What new meds are you on now? I was put on Xeloda, with some side effects, but nothing terrible. I continue to try to live my "new" normal life. How are you doing on the new meds?

[Julie2233 in reply to jstickrod]

The oncologist wanted to put me on intravenous taxol, and xeloda was another option, but I wanted to try another hormone inhibitor first, as faslodex and ibrance were first line for me. He agreed to give me a 3 month trial of afinitor 10mg and extremestane 25mg. I felt wiped out the first week but starting to feel better now (3 weeks in).

Major side effects have been mouth ulcers. I’ve also had an infected tooth root under one of my caps which made me feel awful. But bloods were excellent - neutrophils were 3.3!

I saw the oncologists registrar on Tuesday and he was very surprised that i’d Been put on these drugs because of the known side effects, but he was also surprised that I was tolerating them so well. I will be scanned at Christmas, if there is progression then I will start taxol. It has been tough giving up faslodex and ibrance and i’m Still not sure if it was the right thing to do.

[Mindysooty]

hi there, definitely not a given. I'm on my 5th month - had a few ups and downs getting used to it but now I'm absolutely fine. Been phasing back into work and as from next week will be back to full time. I try not to focus too much on side effects because I think you can start to , not exactly imagine them but attribute every little thing to them, if that makes sense. I'm still on 125mg dose - had 1 week where neutrophils were below 1 so had to have a 1 week delay in round 3 treatment but since then I've been fine. My hair is thinner but I always had really thick hair so still plenty to go at. I do notice it in my hairbrush a lot - doesn't come out in clumps or anything though so it's not so bad.

Good luck with the treatment, I'm sure you'll be fine and it will do it's job for you. Take care.

Josie x

[TuliS in reply to Mindysooty]

TYVM

[Hidden]

Hi there

I’m on round 5 of 125 mg. no problems other than stinky pee - but that could be the Letrozole.

Good luck with it

Clare xx

[TuliS in reply to Hidden]

TYVM for reply, I don't plan on smelling my Pee, LOL

[Hidden in reply to TuliS]

😂

[LaliChicago]

I’ve been on Ibrance 125mg for 7 months and experienced shortness of breath early on. I now feel very little effects.

I agree with the other replies that our minds and attitudes can affect how we feel.

Good luck.

[Boogitymom]

I’ve been on Ibrance 125 for 43 cycles. Side effects seem to be hit or miss, some months more fatigued than others, some months feel like I’m loosing more hair than usual and some months more digestive issues. I’ve been blessed that this 1st line of treatment has worked so well.

[Sister3nkc]

Hi Tulis

I have been on ibrance (125mg) and letrozole for 55 cycles, yes, 4 years and 7 months. Side effects are going to occur for everyone. How our body responds or tolerates those side effects is very individualized. By far my worst side effect is debilitating fatigue. You learn your limits and how to plan activity and pace yourself. My cell counts (RBC & WBC, ANC in particular) are chronically low. I had some pretty extensive mets to my left lung that this treatment protocol has healed with ZERO progression. So, I'll take the fatigue. I also have side effects such as thinning hair, brittle nails, dry skin, headaches, muscle, joint and bone pain, but these side effects do not impact my quality of life the way the fatigue has.

So, it's a wait and see thing. Give it some time. Expect to see side effects but don't focus on that, don't focus on ANYTHING negative. Live and enjoy your life one day at a time.

Post updates and let us know how you are doing.

Namaste

[mariootsi]

We are all different. So it's hard to predict. I find the longer I'm on it, the more fatigued I get.

[Mammyhen]

There are women who have no side effects. I did 8 cycles of 125 before I had my oncologist lower my dose. The fatigue, headaches and weakness were just more than I could do. The lower dose is easier.

[Iwasborntodothis]

I am so grateful for this site, I just started Letrozole 8 days ago and Ibrance 2 days ago (my insurance initially denied it, so it was delayed - thanks BCBS).

So much hope and great information.

Prayers to all of you on this journey.

[Teddielottie in reply to Iwasborntodothis]

Wish you well as you start out on the Ibrance /Letrozole cycle . Keep hydrated ,keep moving , eat well and rest when your body tells you ! x