Tomorrow (Tuesday 3/5/19) I will accompany my husband to Richmond, VA for screening initiation for inclusion in a Stage II Clinical Trial for Melanoma at Virginia Commonwealth University. Last Monday while attending the Melanoma Research Alliance patient advocacy symposium we met a gal who had treatment for Tumor Infiltrating Lymphocytes (TIL) when she was in the same Stage I trial at the National Institutes of Health 6 years ago; she has been NED ever since!
This gave us a face, a resource, and she has made herself available to us as we move into this next treatment intervention. And she lives nearby. The attending physician she had at NIH is the principal investigator/ physician we are working with at VCU, Dr. Phan.
While very grateful that Wayne has this appointment (we first had a meeting 3 months ago with Dr. Phan), it has been a difficult 3 months of waiting, an unexpected hospitalization, required colonoscopy clearance (went well! no issues! come back in 10 years :), and more tumors are developing at the rate of about one location per month. To be honest, my anxiety has been fairly brutal and concentration perseverance has been difficult to maintain. I'm hoping getting this show on the road will be helpful and that timeframes for next steps can be determined.
In the meantime, back to work for me.
Peace,
Missy
Full brain radiation and immunotherapy questions
My daughter has passed
