Sunday, February 9, 2014

Side effects of Nivolumab....9 months after last dose!!!

In the words of Weber...."This stuff is weird!"

So, for the past 9 months I've been going about my business.  Had my last anti-PD1 (Nivolumab) infusion in June.  Had a recheck at Moffitt in September at which time my mouth ulcers were finally resolving after their 4 month residence!  I did have a little flare of oral lesions in October, but it only lasted 3-4 weeks and never got nearly as bad as they had been. Since then, I've been working as usual, increasing my running and elliptical workouts and feeling well.  Many of my co-workers have been stricken with flu and strep this season despite our early flu immunizations...but not me!  My asthma hasn't even been too much of a bother.  However, during and after my runs at the end of January, I began to notice that my ankles and knees were aching.  I've run much of my life and have been lucky never to experience joint issues with it, but thought, "Guess, I've been overdoing things a bit!"  I took several days off from exercise, took Advil, but the joint pain just kept getting worse!  Nurses at work noticed I was unconsciously supporting my right side and arm, and had a bit of a limp.  "I'm fine, just ran a little too hard too soon, I guess." But, last week, despite having had no fever, the body/joint aches were so persistent and I felt so very tired generally, that I had one of the nurses run a flu test on me.  Negative!  "Well, that's good," I thought.  Figured it must be some other nasty virus, even though I still had no fever.  But, just a couple days later, as my wrists, hips, elbows, and toes...joined my knees and ankles with their aches and pains...two ulcers appeared on my lip.  The area to the side and beneath my tongue, though not ulcerated, was suddenly red and tender.  The light of recognition dawned!  The bug juice was at it again!!! 

Can't really tell any of you what all this means.  Some of my folks are happy to think that "it" is "still working"....but, Good Grief!!!!  Anyhow, the lesions on my lip have already mostly healed and the joint aches are improving, with my tongue only vaguely tender.  Just did a work-out on the elliptical and am no worse for wear!  There are far more difficult things I could be dealing with for certain!!  But, thought some of you out there might like to know.

Hang in there, ratties!  Love - c

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