Has anyone else here developed lung issues while on Ibrance? I was on it for ten cycles in 2016 and developed shortness of breath and the pulmonologist that my onc referred me to diagnosed "Interstitial Lung Disease." He described it as like gunk between the air sacs. It's been pretty stable both according to tests and my assessment of my day to day breathing but definitely worse in humid weather like we've had this summer than when the air is dryer. Apparently it mostly effects my ability to exhale fully, and I was told that I am "fortunate" that is only along the bottom of one lobe of the lung. It makes me nervous about trying any other cancer med that has lung side effects because I think I might miss mild side effects and they might get worse........
Has anyone else developed lung issues... - SHARE Metastatic ...
Has anyone else developed lung issues while on Ibrance?
I am sorry to hear this!!!
Dry cough is there.....is there any remedy for this....plz suggest...
I'm so sorry you that you are having that cough. Talk with your onc about it. Soon. You don't want this cough to become permanent and bringing it to your oncs attention soon could make a difference. I don't know that but the problems I have breathing have hung on for two years and seem stable. And you might mention that you know somebody who developed Interstitial Lung Disease while on Ibrance. Becoming out of breath is on the list of side effects from Ibrance.
What meds are you on now, PJB? Linda
Aromasin and Xgeva. I got over 9 years from Faslodex......have been dealing with mbc for over 14 years, so I've done extremely well, but Ibrance just really set me back.
I was doing well on faslodex and my oncologist took me off it just to try Ibrance. On Ibrance tumor markers went from 48 to 90 to 182 and doubled each month for five months, when he finally agreed to take me off it was over 800. He then forgot he took me off faslodex for no reason, and wanted me to start chemotherapy because I now have lesions on my liver. I changed oncologists and we are starting over after a liver biopsy. First oncologist had also avoided necessary tests to make initial diagnosis! Everything that went well with faslodex and xgeva got worse with Ibrance, including feelings of breathlessness. I wonder about the claims made by Ibrance and what would cause a doctor to continue using it for a patient who was obviously responding badly to its' use. Phelpsie
I just read your note this morning and am so sorry you had this experience. That onc sounds really ill informed. Ibrance is not prescribed alone but is to be used with an AI or Faslodex and if you weren't on one of those along with the Ibrance when you had progression, you might want to file a complaint about this oncologist. It might even be considered medical malpractice. It certainly is not "standard of care." And I'm kinda surprised that the specialty pharmacy that filled your Ibrance Rx was willing to do that without you being on hormonal treatment. I would raise a holy ruckus if I were in your shoes, but I tend to be assertive and pushy when I think the situation calls for it! I've had very good lucky with oncs but have fired a couple of other doctors along the way and think you were very wise to change oncs! Very wise!
How are you doing now? What treatment are you on? You must have been scared, I am so sorry. This dr should not be practicing.
I was on Faslodex and ibrance for 18 mon6. I had to stop ibrance but it got me to NED, so it worked well. Now just Faslodex and so far so good. Faslodex is a hormone blocker. Ibrance is a cell cycle interrupter. The Faslodex is the more important of the two.
Hello, PJB! So sorry to read about your bad experience with ibrance. And I pray that the aromasin is a much better match! You are in my prayers! XXOO Linda in Seattle
PJB, I have been on Ibrance/Faslodex for 11 months. This month, my scans showed lung issues, small nodules now appear in both lobes (lower). Given that, I stopped the Ibrance, I told my onc I refused to take it, and I am now planning for a second opinion, to be sure I am put back on track. I have ILBC, diagnosed de novo in 2010, had tamoxifen for 2 years, Arimidex for 6, so the AIs have worked great for me. Ibrance is the first drug I do not believe is worth taking, so I will not. My tumor markers have never really improved on this combo, and actually risen over the last few months. I don't mind the Faslodex, but I agree with your other post, I don't think the pharmas are forthright when listing potential side effects. Thank you very much for sharing your issues with your lungs and Ibrance it makes me feel like I am making the right decision for myself, at least for now, thanks much!
You have me wondering if I’m on be right medicine. My dx started with shortness of breath, popping noises in my throat when I lie down and some wheezing with a plural effusion in one lung. I currently have a drain. I still have theses symptoms. I have an appointment with my Onc on the 15th. I will have my questions ready.
I was diagnosed with the same lung disorder. Funny, that is becoming common on Ibrance. I have breathing problems on exertion, but not a big deal. I can live with it. They said they could give me steroids for 6 months but that would compromise my immune system. While I can handle this so far, I won't be doing anything! Hang in. I am having an appointment with the pulmonary doc in February to see if it's any worse, but overall I am feeling fine! Kathy
I've been using two different inhalers, rxed by the pulmonologist, and they have helped. Albuterol and Breo. But this summer when the humidity was high, I had difficulty being outside, shortness of breath that I don't have when the air is dryer. One of the disturbing things i have learned is that doctors are not required to report side effects to the FDA and the drug company. I think that is wrong!
I completely agree with you about how wrong that is. My Oncologist Team has decided to tell me that NONE of my side effects-they all began immediately after being infused with all their drugs--are at all related to the chemotherapy-their lack of care really upsets me. I also had to go to the ER and be admitted. After days of the hospital not helping me-just stuck in a bed with nothing to do-I told them I am going Home. STILL over a week later, awaiting emergency Colon Stent surgery (who knows if or when?), and my Oncologist has yet to call me or check on me 😪😔😭. Surviving now on an all clear liquids diet 7plus days now...it ain't fun by any means.
Sorry to hear you are having a rough time. I had multiple mets to both lungs when I was diagnosed with MBC as well as coughing and plural fluid which resulted in bilateral draining of that fluid. I have been on Ibrance/Letrozole for over three years and two of the lungs mets do not show on CT. I have a 6 month follow up with scans in March of 2019 so anxious to see what that shows. Since the fluid was drained in 2016 I try to walk every day to get fresh air and use a spirometer to exercise lungs. So far there has not been any recurrence of fluid.
That’s what’s happening to me on my 3rd week. Thank you for bringing it up!
I had trouble breathing also had a cat scan and have blood clots to both
Lungs I am on ibrance and aromasin and now on 2 shots a day of lovenox for the clots be careful
You might want to talk with your onc about going off the Ibrance. It can cause lung issues! Some oncs are not as up to date on this as they should be so urge yours to check into this for you!
I have been on Ibrance+Letrozole for 5 months for small lung tumors. It seems to have stabilized the tumors and my blood markers are down. I have had shortness of breath which seems to get progressively worse over time. I am having trouble with docs diagnosing the real cause of my shortness of breath and am getting desperate to know if the actual cause of shortness of breath could be viral, bacterial, fungal infection or what. Three docs have said the shortness of breath is likely not related to my lung tumors. I have had pleural effusion fluid aspirated from around both lung which did not relieve the shortness of breath symptom. Is there anyone experiencing a similar situation who has had a successful diagnosis?
Have you seen a pulmonologist (lung specialist)? That's the specialist who diagnosed my Interstitial Lung Disease. I don't remember what it is called, but one of the tests he ordered was in a sealed booth-like space that could accurately measure how much I breathed in, and then out again. He knew right away what was wrong and sent a report to my onc right away, and I was off Ibrance immediately. It hasn't gotten any worse since it was diagnosed 6 years ago, and I'm still here!
YES!! Lung issues is one of the side affects of Ibrance. It actually causes permanent scarring and damage to your lungs.
My metastatic breast cancer came back in my right lung pleura (the lining). Long story short, I have only one and 1/3 fully functioning lungs. Right from the start of Ibrance I had breathing issues. After being sent to a pulmonologist I was put on many medications and oxygen.
It was through my diligence that I found out about the damage Ibrance causes. However they believe the costs out way the alternative, cancer progression. So in essence I am on Montelukast/Singulair, and inhalers as needed for the damage.
On the bright side, I AM still here since 2017. I take a lot of herbals and teas, cut out sugar and coffee so in affect taken steps to help my body help itself. I can hike distances and do moderate strenuous activity without oxygen. Be your own advocate and know ALL the side affects of any medication however small the chances. I hope you get some answers. No doctor is your friend. Oncology and referral dr’s are a racket; a somewhat necessary evil. My advice is learn, learn, and learn. Good luck friend.
Thank you. That is helpful. I can relate that no doctor is your friend. I've already seen a pulmonologist who was zero help. He did not even know any of my medical history previous to my visit. I knew he was just winging it and did not provide any direction whatsoever. I switched to another pulmonologist and am trying to get an appointment with him. Overall, if I didn't spend many hours researching on my own I'm afraid the docs would drag this on accompanied with more repetitious tests. I'll hold this new pulmonologist's "feet to the fire" so I can get some answers, if I can even get an appointment.
Thank you so much for sharing this. I experienced severe breathing problems on chemotherapy. I too have Metastatic BC and I think that is also what they gave me too.
Hi, I have breathing issues on Ibrance so I am not taking it right now.
Hello PJB,I can say that recently when I did my 1st round of FolFox5 and had a take home chemo pump attached to me for 48 hours-My lung capacity dropped significantly. So much so that I had to depend on my inhaler for a few days. I could not breathe properly and it was scary. And I almost never use my inhaler-only when there are wildfire air warnings and smoke in the air.
It was really hard to get any good deep breathes in for the entire time.
It scares me that I told my Cancer Center about all of these Side effects of chemotherapy-including the cold sensitivity, I also literally lost my voice for a good week and a half--their reply to me,
"None of those are chemotherapy side effects." So a lot of denial is what I am dealing with and its truly upsetting.
What is the Answer though? Don't get this chemo that causes all this trouble? Don't go after the Cancer? I guess its very worrisome yet I don't have an answer.
I wish there was more support regarding these serious side effects.
I hope it helps to know other people experience lung trouble due to chemo. I wish I knew the solution.
Best wishes to you,
Helen
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