Ibrance side effects

[Antares12]

I just started ibrance on Wednesday. Today has been the worst day of my life. Does it get better? Is is that ibrance isn't for me?

[Hidden]

Hi, I was diagnosed with de novo mbc at the beginning of Feb this year. I’m now on my second Ibrance cycle. For the first two weeks it wiped me out. I couldn’t stay awake during the day and was in bed by 8:30 pm. My brain was foggy and I was terrified that this was what it would be like all the time. By the third week, the fatigue started to subside and with a strategic one hour nap after lunch I could stay awake until 10pm. The brain fog also started to clear. During my second cycle the fatigue has become manageable and the pain from my bone mets has decreased. I got lots of great advice from everyone here. Definitely drink lots of water and try to be as active as you can be. I’ve now returned to lap swimming and resistance training after thinking that I’d never get off the couch again in early Feb. I think the side effects are different for everyone and from the information from the ladies here, they may differ from cycle to cycle. Talk to your care team and let them know what you are experiencing. PM me if you want to chat more.

[Antares12 in reply to Hidden]

Thank you for the encouragement

[Kdiet in reply to Hidden]

When the going gets tough, I tell myself that I am so lucky that these lifesaving drugs are available and that, if there were not some mighty side effects, I would probably feel that they could not possibly be effective. I have now completed 18 months of Ibrance at 125mg and Letrozole. If has not been easy and my life is different. However, the cancer in my sternum is gone and the sternum has healed and I am hoping for a similar result in my 5th lateral rib. I do lose about a week a month but honestly that week is not lost it is just a week when my own headstrong schedule has to be adjusted and the drugs are in charge. More napping, more reading and TV and less running around - that is ok. My MD is really the boss with me. My husband told me early on that if I really badgered the guy he would lower my dose and give in to me but that I should trust him and follow the protocol that he believes will get results. So, I give myself up to him and am not the know it all I used to be. You will find that it does get easier. Try to feel good that these drugs have been developed and feel proud that you are working hard and getting it done.

[Maludagui]

Hi 🙋‍♀️ good morning 😍❤️🥰 you are warrior. Please no worries. One day for time. I am starting 30 cycles on ibrance /Letrozole. This working for different ways. If you have question please call your doctor. They and ours are winners . 🌺

[Teddielottie]

Hello and welcome on here , but I am sorry that your first cycle of Ibrance has been a struggle . I just wanted to say hang in there as it does get easier ...make sure you are drinking water all day , and I recommend that you take your tablets with food. You will be very tired in the first few cycles , so rest as much as you need in the first 3/4 months ... if you are able to get out for a daily walk and fresh air , you will feel better. If you get any specific side effects , eg mouth ulcers , ask on here for advice . I am now on my 44th cycle of Ibrance /Letrozole and tolerated it well, and I wish the same for you . Take care! x

[Lakelifenh]

Hang in there it gets better. Been on ibrance and letrozole 4 years 4 months. I started on 125 mg for two and a half years. Then switched to 100mg do to gastric issues. I take my Ibrance in the evening with dinner. Drink lots of water throughout the day. I take a probiotic, blood builder, glucosamine, and letrozole in morning. I do have knee and hip pain but try to keep moving. A low sodium diet also seems to be helping. Good luck and its ok to go to bed when your tired. Your body is in a battle. It takes time to adjust.

[Kdiet in reply to Lakelifenh]

Hi. Can you share more about the probiotic and the blood builder ? What do they do? Brand ? Dosage? Thanks.

[Lakelifenh in reply to Kdiet]

I take a general store brand probiotic because supposedly a good healthy gut boosts the immune symptom. I always have a low white blood cell count. I was anemic when I was first diagnosed my gynecologist recommended mega foods product called blood builder. It is gentler on the stomach for those who struggle with taking iron. But you shouldn’t add any supplements without talking to your doctor.

[Kdiet in reply to Lakelifenh]

Thanks for sharing! x

[love2golfwell in reply to Lakelifenh]

You are so lucky that your doctor approves of supplements. Mine did not even want me taking zinc. She lets me taking a multivitamin and a raw calcium/vitamin D supplement but that is about it. I like the idea of a blood builder and a probiotic!

[USIrishcolleen]

antares12,

So sorry that you are not tolerating Ibrance. I am having the same problem with Verzenio, except the main side effect is diarrhea. NOT fun! I am finishing my third week. I am hoping it will subside, and hoping the same for you.

Best,

Colleen

[debbiedo2063]

Hi thereI was diagnosed Nov 20 and on Ibrance since Dec20. At first I felt so weird it was a combination of fatigue and life changes and thinking how bad is this going to get. Over the last 3 months and 4 cycles it has got much better re fatigue and generally feeling like my old self. I think at first it feels like how am I going to cope with this, I remember my lovely oncology nurse saying life will get back to some sort of normal even though you might not think it at first and I looked at her thinking are you joking. Today in contrast I am up at 7.30am painting my garden fences, just stopped for a break to check my E Mails. If you had have said I would have been doing this 3 months ago I would have said NO WAY. Turning point for me was cycle 3 and finding this forum to be honest.The advice on here is amazing, drinking water all day and keeping active and rests really does help.

You take care and I hope today is a better day.

Debra ❤️Xxx

[Beryl71]

I am sorry you feel so bad. I suppose for me I felt bad before the treatment I didn't notice and I was given a long list of side effects which I remember made me cry. I said to the nurse, I thought the treatment would make me feel better. Well twelve months later and I'm gardening, can do a five mile walk, do several work out classes and don't feel limited at all. I don't always get up early and I sometimes sit with a book and coffee during the day, but then lockdown has helped me pace myself better. I drink plenty, bought a number of books about diet and cancer and refined my diet, have lovely friends and have even found an online partner I'm looking forward to meeting when possible. So look after yourself, keep positive, make small plans of things to look forward to and keep close to your friends and family and I'm sure you'll soon bounce back up again! And reading what all the ladies on here said I realised life was not over with an MBC diagnosis. Good luck! X Carolyn

[Julesdubai]

Hi hang in there you are a warrior and you can do this! It does get better I promise. What time do you take ibrance? I used to take mine first thing in the morning and felt terrible all day but now take at 9pm and sleep through the side effects. Sending positive healing energy your way xx

[Timtam56]

Hi Antares12.I'm a bit concerned.

To say it's the worst day of your life is quite a huge statement.

I'm on ibrance. 3 years now.

My first week was not that bad. You don't mention what you have been feeling.

What are the issues?

If it's that bad. The worst day of your life....I'd be calling my medical team if I were you.

Chris. From Oz.

[Phillipians4and6]

It gets better! Hang in there ❤️❤️

[Red71]

I have to agree with Timtam in that you have not spelled out what is making you feel like this is the worse day of your life. Less generalities and more specifics will help up give you much better advice. Elaine

[Totheriver]

When I started Ibrance I was in and out of hospital. My body could not tolerate the 125mg. After about 7 months I dropped to 75mg. It is a lot better but I struggle to get my blood up ever month . I still struggle with fatigue too but pace my self when I do things.Hope it gets better for you!

Theresa

[PJBinMI]

If Ibrance is causing you any lung/breathing issues, call your onc immediately! It can cause permanent lung damage, reportedly a "rare" side effect, but not one to delay addressing! I was on Ibrance for just a few cycles not long after it became FDA approved and before the severity of lung problems was recognized and warned about. It caused me to develop something I had never heard of, Interstitial Lung Disease. My pulmonologist described it as being like "gunk between the air sacs." I get out of breath easily and have a hard time when the air is really humid. I have two puffers that I have to use every day. I believe Affinator can also cause lung issues--a friend died from that, so I take these lung issues very seriously. Not something to keep us from trying those meds, but we do have to be sure to report any breathing issues right away. I hope that isn't what you are writing about.........

[Gingerann1]

I’m just finishing my 3rd cycle of Ibrance, 125 mg. The 3rd week before the off week seems to be toughest for me when for at least one day I pretty much have to lay around all day although I do try to do as many little things just to keep moving. I am almost 63 and feel blessed that I am retired so I can develop a new pace of dealing with this. My hats off to all who are still working and dealing with MBC. Good advice given in the responses here. I do better when I take the Ibrance in the evening with dinner. Drinking a lot of water definitely helps too. When things get better with your meds it definitely helps lift your spirits to have a plan to do something out of the house. Yesterday my husband and I spent the day in Myrtle Beach (45 min. drive from our house) to shop, enjoy the warmer weather and have lunch. I was moving a little slower and was definitely tired last night but those outings to look forward to are what keep me going. That and we have our first grand baby due in July...a little girl I can’t wait to meet! Hang in there as you find a new normal.

[SeattleMom]

So sorry that your side effects sound bad. You don’t mention what they are so I can only guess that it’s a combination of bone aches and weakness. I was on Ibrance and Letrozole for 32 months before mild progression led me to a new protocol (Faslodex). At the beginning, I felt a lot of aches and a lot of exhaustion (napping throughout the day.) However, these symptoms subsided over time and daily life became more manageable. Also, early on, my dosage was reduced from 125 to 100, due to low white cell count. I think that did the trick. If yours are low, you may want to discuss this with your oncologist.

God bless you! You are in my prayers!

Linda

[Antares12 in reply to SeattleMom]

Sorry I should have been more specific. Besides bone numbing fatigue, I didn’t want to eat or drink. I wasn’t nauseous, but I felt like crap. I was hot and cold at the same time. I couldn’t concentrate. All I could do was exist in the misery.

The doctor gave permission to skip the next dose of Ibrance, and I started feeling a bit better. Then the diarrhea hit with blood. They had me go to emergency. Turns out nothing serious, but they are taking me off Ibrance for a week.

[SeattleMom in reply to Antares12]

WOW! Sounds like maybe there should be a discussion about a different protocol. 🙏🏻🙏🏻💗💗

[Kdiet in reply to Antares12]

Are you also on Letrozole? Are you maybe having hot flashes?

[Andibo]

I have been on IBRANCE for a little over a year. The first few weeks were tough. Extreme fatigue and a lot of nausea. I remember thinking "crap..is this what its going to be like forever." But, it started to even out and I felt more and more normal. It gets better. Hang in there. The alternative to not taking it is worse. It's a powerful protocol but it works. We are incredibly fortunate to have this available to us all. Best of luck....Be patient and take it easy.

[mariootsi]

I would suggest you speak to your onc. Many women here, including me, had to have their dosage lowered.Also, drink lots of water. I also take it at night.

I wish you well. It will get easier as your body adjusts.

Love,

Marianne

[LadyPastor]

I have been taking Ibrance for more than 2 years. I have found that the worst of the side effects fairly well faded within a couple weeks or so. Now the ones I have are not so bad. Well, except for the slow hair loss. Thank God for wigs, lol.

[love2golfwell]

I had nausea for about a week and a half when I first started on Ibrance. It usually happened over night into the morning and I was not able to sleep. One morning I woke up after a particularly rough night and just cried. I told my husband if this was how I was going to feel all of the time, I did not want to take the Ibrance. After talking with a care management nurse I started taking my Ibrance earlier in the evening, got some ginger chews and ginger/lemon tea and drank lots of water. The nausea finally subsided. I also keep active which I think helps, too, and try to eat very healthy. I have not had many other side effects from the medication and will be starting my 6th cycle. I wish you the best of luck. Hang in there. I will keep you in my prayers.

[love2golfwell]

Sandra, you are always so positive and have wonderful advice. I am so glad you have been able to stay on Ibrance/Letrozole for so long. I want to be where you are someday.

[Jenboben in reply to love2golfwell]

Me too! I am on month 8. Is it weird that I've kept all my empty ibrance boxes?? I have no idea why.

[Antares12]

I want to thank all of you for your kind words and encouragement. It helps alot.

[Eliactida1955]

Sorry you are feeling bad and somdays you do. I’ve been taking it since nov 2018 and letrozole. Some people told me it’s letrozole and others it’s ibrance. I lost some hair and felt weak. With Ibrance my wbcs dip and rbcs you have to watch that. I am stable and it has kept the cancer at bay but I’m due for my pet next month. I hope you’re not feeling too bad but to tell you the truth-I never felt the way I was before. No energy and leg weakness. I wish the best for you! 🙏❤️

[love2golfwell]

You are welcome, Sandra. You echo my feelings. I try to think positive and control the things I can in my life, like eating healthy and exercising. The rest I leave up to God and medicine. Thanks for your wishes.

[blms]

Hang in there for the first month with blood work in two weeks. You may be just adjusting. yes it makes you really tired. You may be able to reduce your dosage to 100mgs or 75 mgs. I felt much better after I switched second month

[hurricaneheather]

i'm sorry to hear that Ibrance has triggered the 'worst day of your life.' this body has been receiving Ibrance since August 2015. i do not recall much about the beginning rounds, other than it started with 125mg, which shrunk tumors and was too much for this body to tolerate. the dose was lowered to 100mg, and it continued to shrink tumors, yet was still too much for this body. by the end of 2015, the dose was reduced to 75mg. the most challenging side effect for this body was fatigue, followed by chronic sinusitis, which can be annoying; they are manageable, for me. fortunate for an onc who hears me and adjusts the dose, as well as the dosage schedule to assist with balance and quality of life. i am grateful that Ibrance has been received by the body and it is doing well. may it do the same for your body.

[NewZealander]

I'm sorry to hear that you're having a rough time with Ibrance. I hear you! I also found it tough going and my Oncologist agreed that it was just too toxic for me so he reduced the dose from 125mg to 75mg and that helped although I still had severe mouth ulcers and had difficulty eating so he changed the dose to 7 days on, 3-4 days off, which might be something you could talk to your Oncologist about. It worked for a while but after 5 months there was progression. The best thing I ever did though was a tissue biopsy of an accessible liver lesion and I now have a DNA Mutation report that has identified a number of mutations, which will help my Oncologist to focus my treatment on those drugs that have a good chance of working and not use any that my mutation isn't likely to respond to. Such a wonderful resource to have, I wish it was available 20 years ago. Is that something you have considered? It also can open up drug trials. Best wishes, Jan

[Georgelila]

I love this message board bc of messages like this one . Truly inspiring and nobody understands what this is like except us! Thank you !

[Hidden]

Hi and welcome.I hope your body settles with the Ibrance. Are you on other meds as well as Letrozole and the injections to put you into menopause can cause symptoms as well?

I have been on Ibrance for coming up to 2 years now. It took me a while to get used to my new life, but actually it isn’t much different to my old life. I haven’t had a day off work sick since my diagnosis and I keep active.

I echo the advice above, and hope you see a change soon.

Clare

[Klamato]

I took Ibrance for more than a year and had no problem with it. I ended up failing it because of progression in my bones, so now I’m on VERZENIO which kind of the same thing. My biggest problem from both meds is my hair and the dryness of it along with unruly kinks all over! Believe none of these meds are a picnic but we are at their mercy. I think if you stick with Ibrance you will find you will feel better. Good luck going forward. Keep the faith. Kathy

[Jenboben]

I'm loving being on iBrance. Give yourself a chance to mentally adjust. Life gets better!