The second week of January I was admitted to the hospital with life threatening side effects; my immune system was attacking my skeletal muscles (myositis with rhabdomyolysis) and my heart. I was in the hospital for 8 days. I was left with an autoimmune disease, Myasthenia Gravis.
My case was unusual and I am not sharing this to frighten anyone away from immunotherapy!
This is a photo my husband took while 14 doctors and medical students observed the examination process needed to diagnose myasthenia gravis.
In 2019 my case was written up for medical journals; Autoimmune myositis and myasthenia gravis resulting from a combination therapy with nivolumab and ipilimumab for metastatic melanoma and Ophthalmic Immune-Related Adverse Events of Immunotherapy: A Single-Site Case Series
My first goal after being released from the hospital was to attend my daughters April wedding on the beach in Oregon, even if I had to use a wheelchair or a walker! I made it! And I actually only needed the wheelchair in the airports, and didn’t even need the cane during the wedding festivities!
My follow up scans showed that the immunotherapy really did not have much of an effect on the tumors in my liver.
At this point the decision was made to start Interventional Oncology Radiology treatments; microwave ablations and one immunoembolization.
My doctor, Dr. Kim, was recently featured in the Fall-winter 2018 issue of Centerpoint Magazine from Yale New Haven Hospital.
I’m grateful my liver is still not impacted at all, through all of this with the exception of when I was in the hospital in January. My blood work also continued to be completely normal.
One of the highlights from 2018 was the opportunity to volunteer for the Annual Smilow Cancer Hospital Closer to Free Ride! My husband Paul Apito rode 65 miles and we met our fundraising goal thanks to friends and family. I volunteered on-site in the cheering committee!
The first quarter of 2019 included another microwave ablation procedure. Then in the Spring, I decided to try a Clinical Trial through the Phase One Clinical Trial area of Smilow Cancer Hospital. Between May and September I took the PARP inhibitor drug ZEJULA® (niraparib). Unfortunately my follow up scans showed progression and I experienced side effects which landed me in the hospital once, and on the couch or in bed much of the time.
During this time I got a lot of comfort from my new hobby, painting rocks for The Kindness Rocks Project Ambassador Smilow Rocks. Unfortunately I was too sick to go to my second Closer to Free Ride Event in person, but Paul rode 100 miles! We not only met our fundraising goal but surpassed it, with the amazing support and very generous donations of our friends and family. Learn more about Closer to Free!
One thing I am really proud of is being the founder and administrator of a really wonderful Facebook Support Group for UM patients! If you are reading this and you have Uveal Melanoma, please consider joining the Uveal (Ocular) Melanoma Support Group!
I am very flattered and honored that in October I was interviewed and videotaped for the TV Show Life Lessons: Cancer Today and Beyond.
My interview about coping with cancer was shown during the live studio taping. The actual TV Show is available On Demand online.
It was actually the reaction to this TV Show that resulted in my decision to retire the blog I had been writing about my eye cancer journey, and to launch this blog instead!
My plans for the rest of 2019 include more rock painting while I recover from my next liver directed treatments, radioembolization planned for November and December. I look forward to sharing more Good Things on this blog, too!
— Susan Sawhill Apito