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Difficulty Breathing after Keytruda
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Difficulty Breathing after Keytruda

› Forums › General Melanoma Community › Difficulty Breathing after Keytruda

  • Post
    • July 2, 2018 at 9:13 am
    Oldwife
    Participant

      So, DH started Keytruda and is due for his next (third) infusion July 5. Since he started, a small cough turned into a respiratory infection, and then he started having difficulty breathing. Docs ordered a new CT scan 10 days ago and lungs showed more opacity and bigger lymph node involvement on the right side, plus precarinal area.  He has fluid on the outside of his right lung, also contributing to respiratory problems.(His previousCT was 11 weeks ago, two weeks before he started Keytruda.)  I did talk our local doc into increasing his lasix and lowering his BP meds

      The oncologist said either the Keytruda is not working and he is getting worse, OR the Keytruda is working, and the respiratory problems are the result of his immune system fighting the cancer. Meanwhile, he has been on 40 of Prednisone for 5 days, and is using my albuterol nebulizer X2 per day, but these are helping only a little. He is exhausted, pale, has to sleep sitting up… at least the Prednisone is giving him a bit of appetite- he lost 10 # in the last couple of weeks before he started taking it. Yeah, and he's still coughing..

      Please, any similar experiences with Keytruda? Advice?  Thank you, from the bottom of my heart. We are fighting out here.

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        • July 2, 2018 at 8:22 pm
        cjm22
        Participant

          I don't have any similar experiences to share since my hubby was never on Keytruda. I hope it is just Keytruda kicking butt in your case and regardless, just wanted to reach out and say I'm so sorry this is happening because I remember how scary it was when my husband was in the same way. It's such a horrible experience. I hope you both find relief soon.

          • July 2, 2018 at 10:43 pm
          Bubbles
          Participant

            I tend to agree with what your oncologist thinks are the two main alternatives of what is happening, but….I feel he needs to provide some help to make his patient feel better.

            Here are my thoughts:

            1.  A thoracentesis (fancy word for drawing fluid off the outer area of the lung) could possibly be something that could be done to improve lung function and provide relief.

            2.  As a person with asthma, a person who manages patients with asthma, and a person who experienced pneumonitis on nivo….you could up the times of the albuterol nebs to 4 times a day.

            3.  In addition to the albuterol nebs, you could add an inhaled steriod…like pulmicort/budesonide.  It would do no harm and might help.

            4.  When are next scans planned???

            Don't know if all that helps very much, but those are the things I would be asking my doc about if I were in your husband's shoes.  So very sorry for what you are both dealing with.  Hang in there and be sure to take care of you. Celeste

              • July 3, 2018 at 12:42 am
              cjm22
              Participant

                Oh one more thought to add … You didn't mention home oxygen in your post? I'm sure the docs are keeping track of his oxygen saturation levels but in my husband's case, things changed very quickly so if the docs last saw him 10 days ago, maybe his oxygen levels were fine then but now he could use home oxygen. That gave my hubby a lot of relief and helped him to sleep and feel more comfortable. You can buy a little oximeter at home for not too much money to monitor the levels yourself. We had a pretty extensive home oxygen set-up for about 2 weeks before the Taf/mek kicked in.

              • July 4, 2018 at 6:48 am
              aldrichdesigner
              Participant
                I just had infusion #15 last Friday. I unfortunately experience a lot of the symptoms of Keytruda so it’s been a rough ride but it’s also working so it’s worth it.

                I have had a cough since the beginning of treatment but it has not been accredited to anything. Not even an ENT could figure it out but I had a lot going on from sprinal infusions to radiation to keytruda so no one would point the finger.

                Anyway, long story short, yes I have a cough … But it’s productive. I (for lack of a better word) hack up 8-10 globs of mucus a day and have for the last 9 months. It’s annoying and occasionally when it’s getting ready to happen things can be hard to breathe. But that is it, I have Albuterol that I use sometimes and it helps … Sometimes. But I have no fluid on my lungs or other worsening symptoms.

                It sounds to me like you need a second opinion. Do you have anyone else consulting on this? I’m Far from doctor but it does not sound like the Keytruda is working to me. Not only that but your husband may need to be treated for something else as well. I’ve not heard for keytruda causing any of what you described and isn’t even suppose to cause cough which is why I saw an ENT about it and everything.

                Good luck, I hope it gets better soon.

                  • July 4, 2018 at 2:28 pm
                  Bubbles
                  Participant

                    I hope you continue to do well and that your cough, will in fact, get better.  However, just in case it becomes important to you and your care team…all immunotherapy treatments (ipi/yervoy, nivo/opdivo, and pembro/keytruda) are known to cause pneumonitis (inflammation of the lungs) in many.  Pneumonitis frequently presents with a cough.  Here are lots of post that have abstracts that address it:  https://chaoticallypreciselifeloveandmelanoma.blogspot.com/search?q=pneumonitis  

                    I wish you my best. Celeste

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