Hi all you beautiful souls..I have been on Ibrance and exemetstine for 18 months with no evidence of disease.I have cat scans every 3 months...this round out of the blue I have ground glass maybe infection and inflammation in both lungs. My doctor says it's a serious rare side effect of oral chemo and I have to be diligent to monitor my symptoms because it can lead to death.. this scared the hell out of me and they want to keep me on the therapy until this 21 days of ibrance is done then come off it for a couple of weeks...Has anyone experienced this and what decisions were made...
Thank you all
God bless
Roxanne
Written by
Mcangel11
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I never had issues with Ibrance but I did develop pneumonitis when I participated in a clinical trial (oral SERD). When I stopped the trial my lungs cleared up.
I too have been on Ibrance fir 13 months now. I have been concerned about my shortness of breath but last scan in September was ok. I’m going to follow this thread to see what others say.
Hi Roxanne. your onc will just be being cautious because very RARELY you can get a condition called interstitial lung disease. One lady on this site had to change medication because of it. Hopefully you don't have it at all but your docs will make sure you don't develop any breathing problems. Hope you stay well and that every day is a good one ❤
I have stage 1 interstitial lung disease so watching very closely .I have been a nurse 40 years so on top it..I might get off ibrance for a while..my Doctor has been a Boston breast oncologist for 40 years also although she Is brilliant her bed side manor is sharp some time and she never over reacts...this time she was very curt and said I have to call her immediately if sob worse or cough..scared the crap out of me ..I measure my oxygen every day at rest and active...uggh this is a full time job...Rox
Oh Roxanne - you must have got such a fright when your doctor's tone changed - you have the perception from years of working as a nurse! I'll have my fingers crossed you never progress past stage one. Best of luck, big hug .
I do think some of these docs over react! I’ve had interstitial lung disorder for more than 3 years and it hasn’t gotten any worse! Stay positive and go forward. I promise it will be okay!❤️🙏🏻
Stop the Ibrance now and see a pulmonologist as soon as you can! Ibrance can cause permanent lung damage. It did that to me in just a very few cycles in 2016 and it may be getting worse now! I have interstitial lung disease which the pulmonologist described as being like gunk between the air sacs (exact quote.). I have trouble breathing when it is humid outside and often get winded just walking from my car parked in the handicapped spaces into a medical bldg. It really is something to be very cautious about, and stopping Ibrance for a couple of weeks while you get further tests is unlikely to matter in two or three years. I suspect that this is more common than reported. I'm surprised your onc didn't refer you to a pulmonologist (lung specialist). I have to use two different inhalers every day.
never advise someone to just stop their meds -- you're NOT their dr. To the original poster, Mcangel11 … please get in touch with your Dr before stopping the Ibrance. Keep us posted.
Thank you but I think she is just concerned and my oncologist had the same reaction..being a nurse 40 years I really do my research and don't do anything without talking with docs..I like this forum because it makes me aware that other people have had this ...no worries
I agree! I have the same thing and it really hasn’t become a problem. I was on Ibrance for 2 years and VERZENIO for 1 1/2 years. I recently began having activity in my bones and liver so I had to begin on oral chemo daily for 2 weeks,, with one week off and so on! Overall, I have been blessed because I feel good with the exception of having a nap most days! I am convinced that a POSITIVE attitude and not concentrating on yourself so much, is the answer! We are all on this journey together and God alone is the only one that can call the shots! Stay positive and live your best life! That’s my best advise and it works for me! Good luck and God bless! Kathy
I've been on Ibrance for nearly 4 months now and developed a strange pain in my lungs when breathing in. I've been coughing a bit more often too. My worry is that it is progression of the lung and pleura mets, but have been told the medication can cause lung problems. I've just had a CT scan and will get the results on Monday. My problem is that they still don't know what my receptor status is as they have been unable to get a sufficient biopsy sample so I don't even know that I'm on the most appropriate treatment. It's all very worrying isn't it? Not just the cancer, but also the potential side-effects of the medications.
Please do a search for my other post on this. This is a very serious side effect of iBrance and all CDK 4/6 inhibitors.
Roxanne, Ibrance since June 2018. The lung situation started with me after a few months. Lowered Ibrance to 75mg (from 100mg) and continued with lung situation. Still have it today. My different Dr's diagnosed me with asthma after a bid test. Asthma meds, inhalers, blah, blah. Nothing has worked. Side effects from all the asthma meds. I have extensively researched and can only find that this lung situation is a side effect of Ibrance. (Read entire patient information sheets/Package insert) on the website and decide for yourself. Dr's all appear to be "unaware". I think I have interstitial lung disease. Not 1 Dr has mentioned this. I gave up & just live with. I have oxygen at home & on days that it's really bad, I use it. I am considering stopping Ibrance. Bless you! Stay positive ! 🙂🙏Marjorie
Being a nurse I do a lot of research.. The ibrance commercial at the very end talks about rare lung disease ca lead to death... my oncologist was very serious about my symptoms...I would be proactive and have a big talk about this....not cool...I won't get to the point you are at because I know too much....please be well honey and be proactive
I was on Ibrance for 18 months. I had shortness of breath starting within the first few months. At that time, they were not seeing Ibrance as the cause. Due to low white cells, I stopped Ibrance. I have stayed on Faslodex alone for the last two years with no evidence of disease. Ibrance was really rough on me, but it worked well. But I’m so glad to not be on it and still doing well.
Hi Roxanne.I've been on ibrance for 3 years now. Yesterday, after my quarterly scans, my onc told me I'm one of her very rare patients who is still stable on ibrance letrozole (or anastrozole in my case). She was so happy for me. I feel very lucky especially when reading your post. But earlier this year I did have a scare. I had a double hit of antibiotics due to lung infection. I just woke up one morning coughing up stuff. A lot of stuff. Didn't feel sick. Hasn't had a cold. But it went away.
So no.
I'm not gloating at all. Just replying to your question.
I wish you well.
And I am not one to give advice.
But good luck, and just always take yourself seriously and believe in what you heart tells you.
I've had too many mistakes made by medicos who don't know enough or don't listen. Always trust you.
Hi. Yes I do have ground glass and cystic lungs, God know where it’s from! I’ve had a couple of test and appointments with a pulmonary doctor! They say “no know cause or cure”. It can come as a side effect from Ibrance/0r VERZENIO. I have taken both for more than 3 years. It can come from the environment also. I am short of breath upon exertion but not a major problem at this point! Presently, because I had activity in my bone, they took me off VERZENIO and I now take 8 chemo pills a day! So far, so good. I will have another PET scan late in November and will see what effect the chemo is having. I have lesions in my bones, liver and lung. Overall, I feel good, with the exception of being tired and having to rest everyday with a nap! This cancer is a fight until the end but I continue to go forward. I guess we are fortunate to have better meds than they did many years ago! Keep a positive attitude and live each day to the fullest! God bless you and just keep going forward! It will be okay! Kathy, Syracuse, NY
I had that happen to me recently. My doctor said it could be one of three things: 1) infection, 2) inflammation, or 3) pneumonitis. She prescribed an antibiotic because I was scheduled for an aortic valve replacement and they want clear lungs. That worked. They took me off for 6 weeks due to the surgery, etc. I'm now on my second round post valve-replacement and doing great.
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