Robert Jones Robert Jones

First post: Feb 9, 2018 Latest post: Feb 14, 2018
Bob was diagnosed with Chondrosarcoma in 2015. It was found to be Dedifferenciated Chondrosarcoma of his Tibia. He had surgery to remove the cancer in December 2015. He had a long recovery period after surgery and a few complications along the way.

 They continued to follow him every 3 months for any signs of the cancer returning. All was well, until June of 2017. They found the cancer returned to his hip and to some lymph nodes. 

They decided to attack this with chemotherapy. He started chemo in August and completed 5 cycles. They hoped he could have 8 cycles, but he had severe side effects from the chemo (neutrapenia), he was not able to complete all 8 cycles.

 They did genetic testing on his cancer and found that he had an IDH 2 mutation. There is s drug approved for this mutation for patients with leukemia, but it isn’t approved for Chondrosarcoma. The next plan was to try to get “off label” approval. They also planned to do 10 radiation treatments while waiting for off label drug approval. The radiation does not cure, but does shrink this type of cancer and works to reduce pain. 

As he completed radiation, he started having abdominal pain. He was admitted to the hospital with what they believed was radiation enteritis. He spent over 2 weeks in the hospital and due to being unable to eat or get out of bed, he became very weak.

 He was discharged to a rehab for physical therapy to help build his strength. He was making a little progress, but became sick on February 2. They brought him back to the hospital and he was found to be septic second to pneumonia. He was very sick and admittted to ICU. His targeted therapy approval for the off label drug is on hold pending his recovery from the pneumonia. 

He continues in the hospital today and is stil in ICU. I will update this site with his progress. 

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