Has anyone on Ibrance had any experience with pneumonitis? I know that this a rare serious lung inflammation that can happen while on Ibrance (or drugs like it) and I know from discussions with my Oncologist that it is something you definitely do NOT want to get.
On scans it shows up as what is called "ground glass opacity". I have had a bit of this for a while already, but now I have a bit of an increase on my most recent scan. I don't have the most common symptoms (shortness of breath and a dry cough) or at least rarely, but a month ago I was hospitalized for coughing up bright red blood. The CT was inconclusive, possibly some inflammation, cleared up in 24 hours, hasn't happened since.
We have stopped the Ibrance until my next scan in November, just keeping an eye on things until then. My Onc has discussed the possibility of the bleeding being associated with the Ibrance, (and of course the scan findings.)
Anyway, I am having a lot of anxiety about this, and I was wondering if anyone else has discussed this or had a similar finding.
Thanks for your time
Maddy
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Maddyandherkittens
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Oh, gosh, Maddyandherkittens, I'm so sorry for what must be a very stressful situation!
I have no experience with what you're describing, but do recall someone in this community, a few years ago, having a rare but quite serious lung issue due to the ibrance...
As you do, I'm sure, I know there are numerous effective treatments aside from the Ibrance...I hope that you are able to make the switch or, alternatively I suppose, just drop the Ibrance from whatever you're pairing it with, until another change is indicated...?
Hi Maddy, when I started palbo/ibrance just over 3 years ago I had issues with lungs. Ground glass was mentioned and I had a dry cough. However .......I have just heard that my ct scan from last July, shows a slight sign of lung inflammation but otherwise I am stable. Ie no progression in bones, lungs and liver. My oncologist is happy for me to continue on palbo ......what a relief. I do hope you are able to do so or find an equally effective drug. Take care, Fay
On my first line, hard chemo, the Royal Marsden team spotted this early on my scan. Consequently they swooped treatments. Like you I didn't have any shortness of breath and I haven't had problems since on that account. However, again like you, I had a period of coughing up blood (and clots) a few months after treatment was stopped. They gave me something to stop the bleeding and considered a bronchoscopy but then decided to wait and see. All cleared up.
Seems like early identification is key to success in managing pneumonitis.
I developed something called Interstitial Lung Disease in 2016 when on Ibrance for just a few rounds. It showed up as that ground glass thing, too. I was referred to a pulmonologist. You might want to suggest that to your onc, too.
They specialize in the lungs and know more than an onc is likely to know, about treatment fr things like this. I haen't read any of the other replys there but wanted to let you know my experience. You coudl haveILD too. I have two Rx puffers that help, albuteral and breo. I do get out of breath easily and don't do well in humid weather. I don't think this is worth panicing over, but you do rprobably need to stop the Ibrance.. Personally, I think the risk to our lungs with several of these newer targeted drugs is greatly underplayed.
Thank you for your reply. ILD was mentioned in another response. I met with Pulmonary and they are puzzled, recommend a rpt scan in November. Off the Ibrance until then. I am asthmatic but very well conrolled, I have inhalers also. I am tired of hearing how rare these problems are!
About 6 months ago I had inflammation in my lungs but nothing was mentioned about ground glass. My oncologist said we would watch it and my next scan 3 months later it had cleared. I am coughing pretty bad now but not sure if it is cancer or heart realated. I am having scans again in two weeks so scan anxiety is setting in. Hopefully they will be decide how to treat it cause I can imagine the anxiety. Hang in there💕. Theresa
Thank you for your reply, I am so sorry that you are going through this. Sending prayers and good thoughts that your scans will help resolve all this. Thanks for your help.
Maddy, my wife was on iBrance for 26 months when she developed pneumonitis. She had ground glass opacities on her scans for almost 3 months with no other symptoms. These opacities may also be referred to in a broader sense as interstitial lung disease (ILD) on scan reports. Her onco didn’t make the connection and just said it doesn’t look like cancer.
She then developed a bad cough which then led to shortness of breath. A local pulmonologist was not much help. She at least recognized that the pneumonitis was a possibility but also did not suggest that the iBrance be stopped. She did a bronchoscopy that did not help in any way from a diagnostic perspective and only exasperated the issue. She was taken to the hospital the next day.
The hospital staff ultimately made the diagnosis. I don’t want to frighten anyone but this is serious stuff that is not well understood in the medical industry and it’s often downplayed and dismissed because the perception is it’s rare. My wife barely survived this. Very high doses of steroids saved her life but they also caused severe issues (Google long term steroid use side effects, she’s had all of them). She was initially tapered off the steroids too quickly and she relapsed. Tapering off the steroids is very difficult. Your balancing the risk of a relapse against the risk of very debilitating side effects, and there’s no playbook as to what’s right or wrong. It’s been 9 months since her diagnosis and she still needs a low dose of steroids as her adrenal function has not yet fully returned to normal (long term use of steroids essentially takes over the cortisol production in your body and shuts down your natural adrenal function). Her lungs are still compromised and she needs low volume supplemental oxygen around the clock,. This is 9 months post diagnosis and almost 12 months since the first scan showed the ground glass opacities.
This is just my opinion, but I would advise anyone on iBrance that if you develop unexplained ground glass opacities on your scans you should discontinue the iBrance, or at least fast track a followup scan in 30 days and if it’s not resolved then move on from CDK 4/6 inhibitors like iBrance. If you ask 7 different oncologists what they would do they’ll likely give you 7 different answers. Based on our experience most would not take this seriously enough at first because Pfizer’s label reports this as being very rare. Based on my research there have been many more cases of this since the label was first written after the clinical trials. Do your own research and trust your own judgment (pneumotox.com is a good website that inventories all the drugs that are known to cause pneumonitis).
Keep in mind that other classes of targeted cancer drugs also carry a low risk of pneumonitis and those identified risks can potentially be understated for someone that has already had or is still recovering from pneumonitis due to even less well understood cross toxicities. If you move on from iBrance to a PARP inhibitor, be aware that Lynparza was found to have a low risk of pneumonitis (lower risk than iBrance) but Talzenna was not. I would not be surprised if Talzenna is ultimately also found to have some risk as it’s the same class of drug as Lynparza, but apparently there have not been any documented cases yet. We moved on to Talzenna and it’s working well.
Sorry for the long post but I thought our experiences with this might be helpful. Hopefully it provides some value and context for you and others. You’re in my prayers and I hope you get good advice from your team of doctors and get this figured out quickly.
Thank you so much for your reply, it is so well-written and informative and is tremendously helpful. I can't tell you how grateful I am that you took the time to post this'
For now I am off the Ibrance. Pulmonary has suggested a repeat CT chest in November, so I have some time to gather data. I am tired of hearing how "rare" these cases are. Also, I don't even have MBC, I have a local recurrence on my chest wall. Their studies were not done on folks like me!
Thanks for a very interesting response to this issue! I do think the oncologists are too quick to prescribe the latest (targeted) drugs. No one seems to be paying enough attention to the fact that the original clinical trials on Ibrance indicated that not all patients responded to Ibrance, while some patients responded well to letrozole by itself, etc., etc. It seems to me that research based on individual patient profiles and reactions is sorely needed. The highly profitable drug companies cannot be expected to do research against their own interests.
I had pneumonitis from Affinitor. I had a cough and SOB for months, getting worse all the time. It finally got so bad with accumulation of fluid that it put a strain on my heart and threw me into atrial fibrillation. I was hospitalized for 9 days and "peed out" 18 #s of excess fluid. It's nothing to mess with and sometimes your oncologist misses it. Speak up, loudly!
Anna, One of my dear friends with MBC developed serious lung issues on Affinitor not long after it became FDA approved. She was hospitalized with, I can't think of the term, something like severe sudden onset pulmonary failure. She was in the ICU and neither her onc or the doctors treating her in the hospital made the connection between the lung failure and Affinitor. The kept giving it to her and after about 3 or 4 weeks in the hospital, she died. This was one of my experiences with the newer targeted drugs and sure gave me a bias! Then when I developed ILD myself, my cautiion grew. I think all patients on this meds should be instructed to call their oncs immediately or go to the ER, and of course at least temporarily stop the med. My call immediately, I mean at 3 a.m. Saturday morning or 10 pm any night. My theory is that it with everything when we have MBC, if we even think of calling our onc or going to the ER, we should do it. Better to do it a little too often than not quite often enough!
I'm so sorry about your friend. That's terrible. We have to be our own advocates sometimes. Best of luck to you in your treatment. I agree, be the squeaky wheel!Love,
I had pneumonitis. My oncologist wondered if it was from my ibrance. Turns out I had radiation in February to my right side for pain relief. And that is what caused my pneumonitis. It took several months to get over. And I had a pulmonologist as well as my oncologist. My pulmonologist wanted to put me on steroids for approximately 6 months to help get rid of it. But but after we found out that it was due to radiation and was resolving itself although slow..we opted not to do steroids. It was going to be a really heavy dose of steroids which I wasn't fond of. My CT scan showed what yours did. It was totally on my right side of my lung. And that is where I had radiation for pain relief. It has since resolved there is minor scarring in my right lung and I can tell it's not fully back to normal but that scar may possibly remain there. It took several months to get over. I don't know if this helps but it was my experience with pneumonitis.
This does help, thank you for responding to my post. I did not realize that you could get pneumonitis that way. I understand why you didn't want to take the steroids, even at lower doses they do a number on your body. Glad to hear that your situation has resolved.
Dear Maddyandherkittens, I am so sorry you have to go through this. I, too, developed ground glass pneumonitis while on Ibrance and also amorodione for afib and can also cause pneumonitis. I suffered sob, a rib crushing persistent cough. I couldn’t walk barely one city block and had no energy. I had Bronchoscopy which showed nothing. I went off both drugs, had two thoracentesis, and am now on Lymparza.I have been on steroids for months and have a catheter in my chest which gets drained three times a week.
So Maddy, I urge you to bring all of your sisters experiences as posted here to have your doctors “hear “ and “listen to you”.
I had pneumonitis last November in the middle of crazy COVID which everyone thought it was. I got taken to the hospital by ambulance because I couldn't breathe and needed high amounts of oxygen and put in the cancer Intensive Care Unit which I was very glad because that was during the time when ventilators were common remedies - turns out it was from the ibrance and after spending 11 days in the hospital I was taken off ibrance. I am currently only now taking the Letrozole which is doing it's job! No cancer but small pea-sized spot on liver. My lungs cleared up except that opacity in scans and what they say is scaring. Everything is fine but it was a terrible experience including the steroids which I am still coming off side effects. Almost a year later. Thinking of you!
Thanks for sharing your story. I'm sorry that you had to go through that- it sounds like my worst nightmare.Sorry to hear that you are still experiencing the side effects from the steroids. I have learned so much from you folks on this site, I am feeling less and less comfortable with going back on Ibrance.
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