Mrs.

[Patsy Kleeman]

Side Effects AFTER KEYTRUDA:  I am a stage 4 lung cancer surviver.  I was on keytruda/chemo for 6 months and then just keytruda for another 12 months.  I did great on Keytruda, felt great, looked great, had more energy than I had in years.  HOWEVER, the last 2 months of Keytruda I started breaking out with skin cancers all and horrible rashes all over my body.  It got so servere my oncologist, after seeing a cancer free PET SCAN, took me off Keytruda.  Its been seven months now, still cancer clear.  My rashes have cleared and skin cancers continue to be removed.  Now, 7 months later I realize that I've been losing my hair.  After chemo it grew back thicker than ever but now I'm starting to see scalp.  I look in the mirror and feel I look like I've aged 10 years in the last 7 months.  I'm only 72 and I swear I look 82.  Before all this I was always told I didn't look my age.  Has anyone else heard of these effects post Keytruda?  If so, does it get better?  I'm starting to feel like an experiment.  I don't think Keytruda is the wonder drug they want us to believe.

[RJN]

Dear Patsy,

I am so sorry you have had such a hard time, but glad to hear that you are cancer clear. I am also stage 4 NSCLC and have been on Keytruda for 14 months now, with another 10 months to go. I have not had severe side effects, but my medical team have been clear that since Keytruda is so new and due to the way it interacts with the immune system, there is so much they don’t know about medium and long-term effects. I find that the most helpful place to get some answers around side effects are the Facebook groups dedicated to immunotherapy, such as ‘Keytruda and I’ as well as ‘Immunotherapy Support Group’. There are thousands of Keytruda/immuno users, so the likelihood of finding others with similar symptoms is quite high.

Personally, I do think Keytruda is a wonderdrug. I am not sure I would have been alive and well without it, and for however long it lasts, I will be grateful. But we are in new territory, so of course it won’t be everyone’s experience.

All the best, Rikke