Profile

Diagnosed with Malignant Thymoma in 3/2020 during heart of Pandemic. Had thymectomy via sternotomy 5/2020 and 7/2020-8/2020 radiation; as well. Stage 3B; had gone into lung (a small bit removed), heart lining, phrenic nerve on right side lung (now have hemi diaphragm that side with breathing issues upon exertion). Then MG set in 8/2021 (limbs felt like cement and had hard time doing stairs, etc. On Tacrolimus (Prograf 4 (1 mg pills per day, tapered down to 10 mg Prednisone/day, Ultomiris infusions every 8 weeks. Found out during that next CT in 11/2021 that my Thymoma had returned in 2 spots in pleural space. Now on Sandostatin Octreotide injections every 3 weeks and Pemetrexed infusion (chemo; 4th round yesterday) at same time because tumors are growing. They were for the most part stable for about a year on the sandostatin. Told unresectable by UCM Chicago Thoracic Surgeon due to where they are now located. Also had a pacemaker put in due to electrical issues with heart this year. I’m 58 years old and now on SS Disability because I’m my full time care giver.