This is the story of one family’s battle with melanoma. The lowlights:
Dad diagnosed with Stage I melanoma, removed with clean margins, he did chemo against his doctor’s recommendation. Sometime in the middle, little brother has a stage I melanoma removed. I had several moles removed during this time, was not diagnosed, or was never told, that I could have, or had melanoma.
Feb 13, 2010 my father died from a ruptured melanoma tumor in his brain. I had some swollen lymph nodes in my groin that popped up out of nowhere on both sides of my body, after a day of wearing really uncomfortable shoes. I was diagnosed Stage 3C a month later. Entire family devastated. Given grisly 5 year survival statistic of 25%. I have been told that cancer doesn’t just come out of nowhere. It sure felt that way to me.
Apr – Oct 2010 surgery – 37 lymph nodes removed (14 were cancerous – 11 microscopically), 4 weeks of radiation, and 4 rounds of 4 day (turned into 5 or 6) inpatient biochemotherapy at MD Anderson. Cisplatin + Vinblastine + Dacarbazine + Interleukin 2. We are fed, sustained, transported and otherwise blessed by countless family and friends.
6/2011 Stage IV – pelvic bone met, surgery with plate, screws and bone cement, then radiation. Told I can’t have ANY more radiation to this area. It would destroy the remaining tissue. New rule – No more statistics. I don’t want to hear them, and I don’t believe they relate to me. New oncologist at Vanderbilt, very lucky to have him. Genetic testing reveals my tumor tissue has BRAF V600D mutation. Rare. Vanderbilt’s first.
1/2012 Cardiac tumor in rt ventricle –> denied for 2 clinical trials. Decided to stay at Vandy for treatment for the foreseeable future after consulting with MD Anderson and Sarah Cannon Cancer Center.
4/2012 Diagnosed with “possible/probable” 4mm brain tumor with edema, but no clearly defined mass. Starting Zelboraf, a new class of cancer drugs. Frustrated by lack of information publicly available on this FDA approved drug and the news that melanoma is skyrocketing in women ages 18-39 I have moved my blog over to WordPress. I hope it will be more easily accessible here. Maybe it can help someone. Don’t feel sorry for me or my family. We are blessed beyond measure. Just do something.
9/2012 -Heart tumor is much improved and brain is all clear. Switching to Yervoy aka IPi.
10,11,12/2012 – struggled on Ipi. Diagnosed with 2 brain mets, 4mm and 6mm, had SRS. Cardiac tumor has regrown and is larger. Restarted Zelboraf. Struggled with liver problems on both drugs but finished all 4 rounds of Ipi.
1/2013 – scans show nothing new, nothing grew, heart met and brain mets are shrinking. Going to 2 wks on/ 1 wk off / 3 pills twice a day schedule for Zel for side effects incl liver problems created by Zel + Ipi, Blessed and thankful to God!!
4/2013 – Zelboraf has failed. Cardiac tumor is huge. Brain/body otherwise stable. Liver back to normal.
5/2013 – Start Merck’s Anti-PD1 Clinical Trial (MK-3475). Infusions every 3 weeks. Scans at 12 weeks to see if its working.