Wednesday, June 18, 2014

One YEAR since last Nivolumab infusion!!!

I cannot believe how quickly time goes by!  Such realizations make me work even harder to appreciate every minute!

Latest stats:
130 months since melanoma diagnosis
50 months Stage IV
44 months NED
42 months since start of Nivolumab/Peptide vaccine trial at Moffitt
12 months since last dose of Nivo!!!!!

Since my last Nivo dose, I've had follow-up appointments and scans (CT's of neck, chest and pelvis with an MRI of the brain) every three months at first and am now on an every 6 month schedule. My next set will be in September.  The arthralgias, mouth issues, and crazily enough....flares at the peptide vaccine sites...continue occasionally, though not nearly as often or as notable as they were at other times.  The worst recent arthralgias were focused mainly on right hip and knee back in April, with some aches in elbows and shoulders then as well...but they gradually resolved.  I've had two separate episodes of very minor lesions to my tongue and general oral tenderness since March.  They really weren't that big a deal, except that when they start, I fear I'm heading back to where I once was! However, the tenderness resolved in a few days and caused no real trouble.  My vitiligo continues to increase gradually.  My entire chest is pretty much white...which I prefer to the blotchy business!

Still work pretty much full time hours. I feel so lucky to watch my little creatures grow and meet new ones everyday.  I'm running better, faster and that feels good.  Rosie is kicking my bootie with some track work outs that left me quite sore!  Shows I need to do that more often!

Still playing with my yard, cooking, sewing, reading, friends and family.  Still doing my melanoma research and postings.  There are days I am tempted to stop that business.  But, just when I think I'll morph into an eating and travel bloggess.....I hear from someone with a kind note of appreciation or with desperate questions about melanoma treatments.  And then I figure, I have access and training....and perhaps (???)....a way with words, such that those in need can find  answers (to the extent they exist) in an understandable, comprehensive

"Do, what you can't NOT do."  
                               Cloud Atlas, David Mitchell

I shall try.  Much love - c

1 comment:

  1. I admire you so much for continuing to research and post your findings in such a concise manner! So many have benefited from your generosity!