Increasing breathing difficulty with Keytruda

Welcome @curiouskitty, Like all of our treatments, Keytruda does come with its list of potential side effects. I'm sure your doctors and nurses have gone over those. Any change like you described would be concerning to me too. The immunotherapies can be lifesaving, but they also have serious risks, such as Pneumonitis, an inflammation of the lung tissues. I'm not a doctor, or clinician, and don't give medical advice. If I were in your shoes, I would reach out to my team. Have you reached out to your oncologist?
It's great to hear that you are stage IV and still playing pickleball. Me too! I play just once a week with a group of friends, so we're very understanding of each other's limitations and ailments. We laugh a lot so it's great therapy in many ways.

@lls8000 thanks so much for your reply. I have contacted my oncology team and am currently being examined. I did find when I am breathless my blood oxygen is about 85. Glad to meet a fellow pickleball player! It is so much fun! I hope I am able to play with more enthusiasm soon!

@curiouskitty
I have finally heard about someone with my same problem.
I started keytruda in 2021 for stage 4 metastasized melanoma in my lung.. I will have to be on it the rest of my life.
Not long after starting treatment I became breathless. I have suffered for 5 years and believe me my quality of life is awful.
I cant walk 20 feet without feeling like I am taking my last breath. BUT as soon as I sit I am the picture of health.
I have argued with my heart doctor ( keytruda damaged my heart) my lung doctor and my oncologist. Noone seems to be concerned.
My oxygen levels drop to 83 and I do a breathing treatment or just sit down. I cant do anything around the house so I had to hire help. .my oxygen levels are monitored from home also. The strange thing is I go back to 97 oxygen lever when I sit. Is this the same for you.?
I dont know how I will make it being on it till I die.
I was also told that my lower back pain has arthritis from 2 previous surgeries. Keytruda attacks the arthritis and causes this pain.
Please let me know what your doctors say about it.
You are so blessed to be getting off it even though it is a miracle drug and I wouldn't be here without it.

@songinmyheart54
Hello there and thank you for sharing your story. We do sound like we have a similar thing going on!
So far while hospitalized to be checked out, I have had pleural fluid drained. There was 650 ml that had accumulated since the end of October. There is only supposed to be about a shot glass amount and I was told mine was about 1/2 of a liter so that probably took up quite a bit of breathing room! So far my right lung is remaining clear. Yay!
I’m hoping there will be a big difference in the way I feel -breathing wise - once I’m out of the hospital and moving around- I hope I am able to move around since like you, I could do very little without dealing with the breathing difficulties!
I have been reminded to make time to use the spirometer more regularly too I’m told. Do you have one of those? They are supposed to help expand your lung capacity.
I sure hate to hear that your heart has been damaged. I am waiting for an echocardiogram of mine tomorrow to check for that. There was also some speculation that I could have pneumonitis (probably not correct word/spelling, but a rare keytruda side effect) and I was given a dose of prednisone for that this morning.
I did have some low blood oxygen readings last night, dropping to the mid-80’s while I was sleeping which is something I wasn’t aware of since I’ve only checked that during waking hours when at home. Maybe due to the pleural fluid buildup? We’ll see what happens tonight since that has been drained.
Other than the echo, I’m not sure what is planned tomorrow other than taking my blood pressure medication which I surely need since my readings are higher than a cat’s back anytime I get near a doctor or hospital! 150’s over 80’s!
I’m currently still scheduled to have two more keytruda infusions. I’m not sure if that will be changed after this hospital visit, or after the result of my next scheduled scans at the end of the month.
I’m so happy for you that you are a survivor but so sorry that the breathlessness is keeping you from doing things that you would like to do.
I hope answers will be found!
I’m a stage 3B CKD patient and that limits some of the medications I can take, plus I’m without targetable mutations. I’m hoping and praying there will be new medications to come to market that will be suitable for my renal condition and make my cancer treatment more clear cut.
I think it’s important to remember that there are good things happening all the time!
Hugs to you and everyone doing battle with this dastardly disease in all its forms!
We must hang in there!

@curiouskitty, Oh my! I'm glad that you recognized that change in your breathing, and that you contacted your doctors. I'm sure you'll watch for that again in the future. Hoping that you feel better soon! Let us know what happens with your Keytruda schedule going forward.