July 2018 Medical Update

Hi, I just wanted to catch you guys up on what has been happening this summer!

After my doctor worked tirelessly on tons of paperwork and several phone calls, I finally got my appointment scheduled with the world renowned Mast Cell Specialist Dr. Castells. This appointment will be at the Brigham and Women’s Hospital in Boston. Although I’m excited about this appointment, unfortunately, it’s not until March 19th, 2019. A lot can happen between now and then, so my doctor is going to continue managing my treatments until then.

My last set of bloodwork came back showing thyroid dysfunction. My TSH was extremely low and so the doctor ordered a set of thyroid tests to hopefully give us more information so we can set up a plan to treat it, and stop losing so much hair.  🙂

After a positive Octreoscan in November, I started working with a doctor at Rocky Mountain Cancer Center. Further testing came back negative but he went ahead and started me on a drug called Octreotide Acetate, which is a self-given injection. I currently give myself four to five shots a day. This has been the most helpful treatment so far as it quickly brings down symptoms from reactions. My nausea and vomiting have been better on this medication. In addition to the self-given shots, I also receive a monthly shot of the same type of medicine that is long acting. My primary doctor and I are currently working on finding the best combination of dosages. I’m just happy to be holding food down.

My last thyroid test finishes up tomorrow, so look for another update soon. Thanks for all the support and care. Laura.