Hello again. Well after almost losing my mom to what we thought was Pneumonia we found out that she had Pneomonitis, most likely brought on by Keytruda. Her lungs quickly began to fail 48 hours after her first infusion. Thankfully the Pulmonologist at the hospital did some research and refused to buy into everyone saying that side effects from Keytruda don’t come on that fast.(yes we’ve been in touch with Merk and they’ve been lovely to work with). Now two weeks later she’s being weaned down off the max treatment which was 60mg of prednisone daily and 15L of 02 by venti mask. Currently she’s at 6L of O2 and 50mg of prednisone and she terrified but much better. Once she’s discharged from the hospital we will talk to her Oncologist to decide the next course of treatment because obviously Keytruda is out.
Has anyone else here ever had a catastrophic reaction to Keytruda? Just curious. Of course we knew it was posssible but never expected it to happen to my mom. Thanks in advance.
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Cici145
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Well cripes, so very sorry it has come to this. She’s struggled with this and it just isn’t fair that it was such a negative experience.
Because it worked so well for others, Keytruda was fast tracked for approval and received that. One consequence of that is we don’t know about every possible side effect or how it will affect all populations. When you know what the next course is please let us know so we can help you with side effects.
I’m so sorry you’re mom has had this reaction to Keytruda. I hope the pneumonitis resolves quickly and you can all move on from this scary experience. Keep us posted!
Cici, I am so very sorry to hear about your Mom's reaction. I also developed Pneumonitis while on "Opdivo", however mine did not come on this suddenly nor was it this severe. It was totally asymptotic and not found until a follow up CT Scan. I felt fine and had no idea. I stopped treatment for time and it cleared, so I went back on...a few months later it happened again and again was only a low grade case and I did not need to go on steroids. I took another treatment break and it again cleared and I resumed treatment, but that time I developed a sudden fever (no cough or anything else), my Onc sent me to the ER for an emergency CT Scan and we found that I had once again developed pneumonitis, only this time it came on right after my Infusion so they stopped the Opdivo permanently. I was very fortunate that mine was always mild and never caused me any problems other than that one night fever. Unfortunately it's one of the known side effects and can be very serious and very scary. I am lucky that Immunotherapy worked for me, despite my side effects, but it was always worrisome because I knew how serious they could be.
I hope your Mom will be feeling much better very soon. Thankfully they quickly realized it was Pneumonitis and treated her appropriately. You are very wise to report this to Merck, that will hopefully some day help others and help the drug companies possibly determine "why and who" some people seem to be more prone to develop such adverse reactions.
Wishing her the very best,
Lisa
PS: So far, I have remained stable, and have not needed to go back on treatment. However, at that time, I did ask my Onc what would be next -- and they said we would likely consider going back to some type of Chemo. I had originally started with Chemo (Carboplatin and Pemetrexed) and had good results for the first several months. Luckily I have now remained stable for 20 months, and have not need more treatment. I will also be following you to know what that do for your Mom, as they may likely come a time when I will need to resume treatment. I have had (Cyberknife, Chemo, Radiation and Immunotherapy) and I'm Stage IV NSCLC.
My husband has been on Opdivo for 9 months and he has developed Pneumonitis twice that has gave him a set back. Prayers sent up for your mom. After standard chemo and radiation failed this was his only option. He was inoperable so that really didn't help. He has stage 3 NSCL- squamous cell and it has been a battle for him. Last scan in January it appears he has another area and he gets repeated test April 11th. If this area is still there his Opdivo will stop. So I honestly know how you feel and will have your mom in my prayers.
Thank you for your reply. Yes, everyone does seem to respond differently. I’m glad both of our loved ones were able to pull through these catastrophic reactions. Funny, Opsivo was just brought up for my mom yesterday.
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