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 ...
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.
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!
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!
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.