Removed from Keytruda trial due to side effects

54 year old male with Stage 3C  I recognize that the side effects of treatment piece has been addressed many times here but still felt that it may be beneficial to some for me to describe what happened to me with only 3 of 18 Keytruda treatments remaining.  Started Keytruda in Apr 2017 to treat Stage 3C Melanoma.  This was after two surgeries and 10 weeks of daily radiation treatment.  For the first six months, everything was pretty good. Moderate daily fatigue and minor rashes, and then six months into the trial hypothyroidism was discovered.  Went on 125mcg of Levothyroxine to adjust and everything was good.until January 2018.  The day after receiving the 15th treatment, everything went to hell.  Severy flu-like symptoms with constant cough, fever, nausea, night sweats, debilitating fatigue, severe dry mouth, accellerated heart beat, dizziness and a host of others.  After several ER visits and several more to oncologist, they could not determine a cause but tested for many of the usual suspects.  My next treatment (February) was postponed and on March 1, was put on high dose Corticosteroids. . March continued with severe symptoms but also slow improvement.  A host of scans and blood tests were completed to figure this thing out.  There was no diagnosis but a lot of things were ruled out.  In April my Oncologist discontinued Keytruda treatment and disenrolled me from the trial because of the lingering side effects.  The oddest thing about this recovery process is that in early April while I was still on high dose Prednisone, I began losing weight at the rate of 3 lbs per week even though I was (and continue) to eat like a horse.  I continue to lose weight today.  I have now tapered the Pred down to 2.5mcg per day and expect to be off of it entirely by Monday.  A little concerned that my appetite will go away along with the Prednisone.

My oncologist believes that the Immunotherapy triggered an auto-immune disease that he calls Mixed connective tissue disease which, although real, I believe to be a catch all diagnosis that does not really get to the root cause.  The fact is that my symptoms do not fit well in any auto-immune disorder definition.  Will see a Rheumatologist in the next two weeks to hopefully get to the bottom of this.

I provide the above as a cautionary tale for those beginning or currently being treated.  These drugs can cause very severe side effects that will significantly impact your life so do not believe for a second that since you have made it most of the way through treatment without issues, that you are in the clear.  The immune system does not like to be tampered with but these drugs do just that.

Cancer:  April PET scan showed no malignent tumors but several lesions/anomolies in lIver, lungs, and pancreas that are being watched.  My singular hope is that the drug actually did what it was designed to do and that future scans continue to show no tumors.  

Wish everyone here the best.