Keytruda and Guillain Barre Syndrome

[Ay1e5bury]

After various false starts, it has been confirmed that the Immunotherapy treatment with Keytruda has been the cause of my GBS event in January. I'm off immunotherapy forever now. Just learned today that my lung tumor has grown and is getting close to my airway. Looking at possible radiation treatment and if not then back on to a chemo mix. Once I know what cocktail I'll be on, I'll come back and ask if there are any other patients having the same treatment. In the meantime, be very aware of GBS while on immunotherapy - it's very, very serious.

[Denzie Moderator Volunteer]

Thank you for sharing this information. This points out why "Patient Reported Side Effects" and pages like this are so important. Will bring off of the Keytruda lead to reduction or elimination of the Guillain-Barre Syndrome?

[Ay1e5bury in reply to Denzie]

Hi Denzie. I am not sure I understand your last sentence and the question asked, however. Yes, side effects are very important. Immuno therapy can be a magical solution, but obviously not in this case. Take care.

[Denzie Moderator Volunteer in reply to Ay1e5bury]

Will the GBS go away now that you are off the Immunotherapy?

[Ay1e5bury in reply to Denzie]

Yes and no. It would be dangerous to continue with any immunotherapy. GBS has improved, still working on balance and my right leg is slow to come back. However, GBS once started can recur at any time, apparently for some patients. I hope not me!

[Jenniferroseolson]

I am very sorry to hear about this. Thank you for sharing it with us. The world outside thinks immunotherapy is a magical replacement for chemotherapy, but your situation (and some of my issues on immunotherapy) demonstrates that we all have to figure out the right balance of treatment to side effects. Praying your next line is more effective.

[Ay1e5bury in reply to Jenniferroseolson]

Thank you, Jennifer! Keytruda was a great drug to begin with, but my tumor has grown, regardless. I’m so glad it works for many, I am one of the rare exceptions.

[Marshmallows28 in reply to Ay1e5bury]

Hi there

My mum also ad very severe side effects on Keytruda. For the first 6 months it worked brilliantly, but then she started to suffer with very bad colitis as a result of the immunotherapy. By this point it had stopped working. She is now no longer on it, but has had radiotherapy (shrunk tumour) and is due to start a new combination of chemo tomorrow. She has also had to undergo a series of treatment to manage the colitis which had become debilitating. Hoping and praying that the chemo continues to work. Agree that immuno can be a wonder drug, but in some cases can lead to very serious additional problems.

[Centralpark2000]

So sorry to hear you had GBS. I had GBS in 1995, was treated with plasmaphoresis 5 times, came home in 8 days able to walk, and recovered slowly. I never had immunotherapy. I was told GBS only strikes once, it's acute & needs immediate treatment. If a person gets additional episodes, then it's most likely CIDP, chronic inflammatory demyelinating polyneuropathy. You should feel a bit more assured that it will not recur. The only aftermath I have is nerve pain in my toes at night. I'm 81 and 6 months out from having a cancerous nodule & upper right lobe taken out. Good luck to you!