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Tired

Faire profile image
22 Replies

Does the symptoms get better the longer your on lbrance ?

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Faire profile image
Faire
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22 Replies
Zebra2018 profile image
Zebra2018

Hi faire, yes at least mine did! I am taking it for almost two years, only thing is bothering me now is very dry skin.Wish you the best of luck

Sima

Faire profile image
Faire in reply to Zebra2018

Thank you that gives me hope

Teddielottie profile image
Teddielottie

Hello Faire ! I have been on Ibrance /Letrozole for over three years and have tolerated the side effects . I did find in my first months of taking Ibrance that I was often tired and suffered mouth ulcers and hair thinning . But as time went by these seemed to be less noticeable and more tolerable , and the ladies on here have lots of great advice on how they cope/d with any side effects . I wish you well on this protocol . Take care! x

Faire profile image
Faire in reply to Teddielottie

When do you take it?

Teddielottie profile image
Teddielottie in reply to Faire

I have mine after my evening main meal, at 7 pm , with lots of water ! ( really important to drink lots all day ! ) . As long as you take it at the same time each day , it’s what works best for you and fits in with your lifestyle. In the U.K. we have just been issued with the tablets ( previously capsules ) and these say you can take without food , but I am keeping with my same routine ... I previously read that Ibrance absorbed better with a protein and fat meal , so sticking with this ! x

How long have you been taking Ibrance please?

I ask because I started at 125 mg. After several months of increasing fatigue, my oncologist and I had a good conversation. She lowered the dosage to 100 mg. That helped a lot.

The change occurred in early 2019.

Several women on this board have had similar experiences.

Please, do not hesitate to discuss this with your doctor. I think we are so trained to expect that cancer treatment will be a horror show that we do not realize there are other ways to manage it.

My doctor knows I’m normally active. When I used the phrase “crushing fatigue” & asked about a lower dosage, she carefully considered it and agreed.

Good luck. I hope this helps.

Faire profile image
Faire in reply to

I just started 3 weeks ago, thank you sounds like things might get better

13plus profile image
13plus in reply to Faire

They will. I’m also very active. Started at high dose and had to keep dropping dosage to 75 mg because my counts were too low ( and I still need to take nearly 2 weeks off between).Got much better after the first few months. Consistent daily movement (a walk is fine!) really will help a lot with overall energy. It doesn’t have to be a hard effort, whatever feels like an appropriate challenge when you’re ok, and a gentle effort when tired, but even a little bit helps.

And yes, LOTS of water is key!

Ardie1970 profile image
Ardie1970

I am new here too. I was dx de nevo January 14. I have been through 1 cycle of Ibrance and have been on Letrozole for about 2 weeks longer. I get tired at times and try to take a short rest. That usually helps. Sometimes I change whatever I am doing at the moment and that helps too. Sorry you find yourself here, but, everyone on here is incredibly supportive.

Sunnydrinking profile image
Sunnydrinking

Hi I was on Ibrance & letrozole for nearly two years. I did get very tired at first but I found the tiredness did ease after a few months or did I just slow down a little.....

Wishing you all the best.

Jo xx

Kdiet profile image
Kdiet

It has gotten better. I have been on 125mg for six months following a change in doctors my first doctor had me on 75mg but my new doctor says only 125mg is truly proven effective. I have now been on Ibrance for 16 months total. He is also a hot shot hematologist. He is very confident but nice. I let him call the shots. He also believes that the hormonal treatments take time to work. When my wbc are low, usually on Day 28, he gives me a Neupogen shot. I am only off about the prescribed 7 days between months.

Side effects DO get better. My “tricks”: plenty of water, protein at every meal including one cup of bone broth/day. It is odd but mixing up activities works for me too. Sometimes I don’t feel great and lie down but usually find some form of activity, although not big exercise, makes me feel better. I am 63 but do think my aches and pains are more akin to a 75 year old.

At the end of the day, I guess I believe what I have read quite often - that the side effects are a sign of efficacy - a good sign, so I hang in there. And, it sure beats IV Chemi which I have had plenty of.

It will get better. Try good nutrition and some good distractions. Xx

Hello Faire:

I have been on Ibrance and Arimidex for 2 years. After a year my fatigue was bad. So my doctor reduced down to 100 mgs and then 75. I have stayed on 75 but I am still tired. But I am 8o, so I think that is to be expected. The lower dose leaves me feeling better than the 125. I am just thankful I do not have to be on Iv chemo. My best to you.-Madlyn

Beryl71 profile image
Beryl71

I have been on ibrance 125mg and letrozole since last April. The only noticeable side effect was mouth ulcers and sometimes a bit of bleeding in my nose. But that seems to have subsided. My CA 15-3 is down to 94 having started at well over 400. I haven't noticed fatigue, but was feeling pretty ropey when I was diagnosed, so I feel much better. But I'm sleeping better whereas previously I didn't! For me that's a good thing. Take care and hope all goes well.

Gmaoftriplets profile image
Gmaoftriplets

Yes the side effects do get better. I was on 125mg for 2 years and am now on 100 mg for the last 2 years. Still have some fatigue and hair thinning. The letrozole causes me the worst side effects of joint pain. Take care

Triplelovex3 profile image
Triplelovex3

hi .it may be tmi but i need to ask if anyone experience vaginal atrophy with extreme dryness

seeing a gyno for work up had a pap smear but it was extremely painful

i have pressure very low abdomen too

i am nervous [it may be my cancer spreading

did anyone ever experience the above side effect being on ibrance and Flavodex

Cowgirl1951 profile image
Cowgirl1951 in reply to Triplelovex3

I am 69. I started with vaginal dryness maybe five years ago. When intimate I have use a very small amount of coconut oil on my partner for a lubricant. Experiment with the amount that is comfortable for you. Hope this helps.

hurricaneheather profile image
hurricaneheather

it's individual. the body has been receiving Ibrance since August 2015; 14 days on, 14 days off. for me, each cycle is different, pending how the body's biome and enerGy is at the onset of each cycle.

Tolife_18 profile image
Tolife_18

It could be just a coincidence, but switching from taking it in the am to taking it at night made a real difference for me. Wishing you the best.

Andibo profile image
Andibo

Hi Faire. I too am newish to this site. It is a wonderful group of women and it gives me so much hope. I have been on Ibrance/Letrozole/Xgeva for a year now. Initially, the fatigue was significant. I had to lay down every afternoon. Now, I feel pretty good. No naps. Take some B12 to help. Be kind to yourself. Listen to your body and it should adjust.

Faire profile image
Faire in reply to Andibo

Has anyone taken b12 shots & do they help?

Faire profile image
Faire

Has anyone taken b12 shots &I do they help?

DeedaSalmon profile image
DeedaSalmon

I am half way through cycle 7 of ibrance 125 which I takealong with Faslodex and Denosomaub (on these 2 for 4 years. Recently traded Letrozole for ibrance as CA 153 was rising). I am finding that I have almost constant diarrhea. This week I am feeling exhausted, really fatigued. I am worried that the diarrhea is not allowing the nutrients from my food to be absorbed. Had an appointment with my Naturopath a couple of days ago, so on his advice have started on immodium. Also some other suggestions. I hope it works soon as I really hate feeling this way. 🤞🤞🤞

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