I have pneumonitis from treatment, my oncologist says it's from both Ibrance and immunotherapy ( the drug imfinzi) that I have been doing. I have both stage 4 metastatic breast cancer and small cell lung cancer at the same time. So I am doing double treatment. My latest CT scan (will be doing another CT scan later) was a mess and my oncologist couldn't tell what was cancer (lf there was any progression) and what is the pneumonitis. So, I am currently on steroids to calm everything down but in the meantime I am off cancer drugs for about two months except for letrozole, I am still on this drug for my breast cancer. Has anyone else had or have pneumonitis? And how long it took to get better from it? I'm asking what your experience with it has been because I would like to know what to kind of expect. Thank you, Alicia
Pneumonitis: I have pneumonitis from... - SHARE Metastatic ...
Pneumonitis
Hi Alicia I was only on Ibrance for about 2 or 3 months and developed pneumonitis my oncologist pulled me off right away and now he has me taking Orserdu . I originally took Letrozole only for 5 years. Then I had progression to hip bone I have both Ers 1 and pic3 mutations. My oncologist switched me to Verzenio and fulvestrant shots and xgeva shot but i was so nausias on it none of the anti nausia meds helped so he pulled me off and tried Ibrance with fulvestrant and xgeva. I developed Pneumonitis so he stopped the Ibrance switched me to Orserdu plus fulvestrant once a month and xgeva every 3 months.Its been good fingers crossed !!!🙂
Thank you for your response!! I have not heard if my oncologist will put me on something else, right now I am off Ibrance and immunotherapy drug imfinzi. She says I may have to live on low dose of steroids for the imfinzi because the immunotherapy is important to limited SCLC. I have stage 4 metastatic breast and limited SCLCg in my lungs. Just one small tumor of SCLC in my right upper lung and in both lungs breast cancer. I no longer have lesions in my liver and I still have a lesion in my right adrenal gland from breast cancer. The letrozole has had to be the work horse for me. I am hoping next CT scan is clear so that my oncologist can see if there's been progression, can't tell because of the mess in my lungs. Hugs 🤗🤗
Hello
My wife is just getting over the same condition brought on by Verzenio. We were surprised because dhe wad on Ibrance fir 3 1/2 years with no lung issues.It was originally diagnosed as double pneumonia but further testing showed pneumonitis. She has just finished tapering off steroids after 10 weeks being on this. She has been off cancer meds except for tamoxifen during that time. She has made a good recovery from pneumonitis with no sign of any lasting damage. Her recent CT’s were stable which seems to imply that the cancer may respond to single agent older drugs - at least for a period of time. We see the oncologist next week and will find out what he recommends. I think if all is stable he wont change anything. I will post any updsted information that may be relevant.
Best regards
Thank you for your response! I am hoping 6 weeks of steroids will work it's magic. I have two drugs that caused this, but thankfully for letrozole has been working by itself since I had to go off Ibrance before due to low blood work. Yes please keep in touch, I certainly will be most interested in hearing about your wife's dealing with this.
I got pneumonitis from my first drug— Ibrance. Needless to say, I was bummed. But anyway, the steroids plus stopping Ibrance improved the pneumonitis very quickly . I was put on Piqray after that. I think I had a break of about 3 weeks, mainly waiting to get the new prescription.
I might not return to Ibrance but I have to resume the immunotherapy which might mean low dose steroids until I complete immunotherapy which is one year. Ugh long time it seems but hey beats chemo and losing my hair again. It's just now starting to really grow back.
Hi MG! I had pneumonitis from a drug called Affintor. It was terrible, I could barely walk up a flight of stairs or walk my dog. My doc stopped the drug and in 2 weeks I felt better and in amonth perfection. Two months later I am bacl to the gym everyday, pickleball, golf etc. I did not take steroids as my doctor said it would be better if I tried to fight it myself. So I did and it worked. The best of luck to you as always
Yes BorisCarloff. I understand about not wanting to take steroids, neither do I but the immunotherapy has kicked in my immune system to high gear with inflammation and in this case it's necessary. Yes the fatigue is unreal with it l. Really glad to hear you can get back to the gym!! Take care, Alicia
ofcourse!!! Wishing you a quickie turnaround. One tip is to do the breathing exercises (I am thinking they gave you) religiously. It really helps the lungs fight back.
Thank you!
I haven’t had these drugs but have had Pembrolizumab (Keytruda) which is a similar drug to Imfinzi. Mine is PD-1 inhibitor, yours a PD-L1 inhibitor. Both break down the ability of PD-1 to PD-L1; this mechanism is the body’s method of creating immune privileged zones around critical organs and your cancer is mimicking it. The drug allows your immune system to ‘see’ cancer that would otherwise be behind an invisibility cloak. An unwanted side effect can be damage of the sort you are experiencing.
I suffered pneumonitis following an immune attack which also damaged my kidneys and thyroid. I needed 9 months of steroid treatment to recover, but I did recover.
Wow, that is incredible and so glad you are recovered! If this round of steroids isn't enough to clear me, my oncologist said she will keep me on low dose to get me through treatment with imfinzi. I will insist on staying on the drug because not sure for the sclc what options are there unlike my stage 4 metastatic breast cancer there are numerous options of drugs. And with chemo for this I have to be out 6 months for another round. My hair is just really starting to grow back. So your kidneys and thyroid recovered? I know she keeps a close eye on those for me also. I most certainly want the invisibility cloak to come off and kill the cancer. I already had two ER visits, one for pneumonia at Thanksgiving and then most recent with this pneumonitis. I started this treatment just around thanksgiving time. It's supposed to be a year of infusions. Did you gain weight on the steroids?
My kidneys recovered but I will need levothyroxine for life as the thyroid can't recover. The first 3 months of steroids were very high dose and then I tapered over 6 months. I didn’t gain weight initially as they took away my sense of taste and therefore enjoyment of food, and the kidney problem was also causing me to shed fluids all the time. I did gain weight once these things resolved, mainly because being so unwell reduced my activity levels. I had to stop treatment as the reaction was so severe. Like with your SCLC I don’t have many treatment options for my metastatic TNBC. Fortunately it had also put me in remission. Wishing you all the best.
Thank you for your response!! My oncologist did say that the thyroid could be affected per before starting immunotherapy. I see in your case it did and I am prepared if that is the case for me. Ok now I know why food tastes like nothing at all. I was wondering about my taste buds lately. It's like why bother eating I get no enjoyment out of it at all. I woke up early this morning totally soaking wet, I know this is from the steroids. Thank you for all the information and I am so happy to hear you are in remission!! I hope that I can get to remission too. Fingers crossed 🤞. Thank you and best wishes in return. Hugs 🤗🤗 Alicia
Enhertu side effect: pneumonitis (lung inflammation)
Lymphoedema with MBC
Immunotherapy 
New liver Mets😢
Are Frequent Scans Safe.
