Hi all! FINALLY was able to start the new med in Oct. They wanted it done at the oncology center, but it turned out to be $743 per dose.  The manufacturer has a program where a nurse comes to your home to administer it for $20. But struggled to find a nurse to get me on the schedule. Thank goodness for GREAT nurse friends who injected me for the 2nd dose until I was added to the schedule ❤️

Since starting the medication, I have seen no improvement and symptoms are worsening. My doc called at the beginning of 2023 to discuss a plan. Decided to do some labs to confirm levels. SPOILER: my cortisol came back high <insert Ali's classic shocked sarcasm expression here>. The doc clarified that the injection is not meant to reduce cortisol/high cortisol symptoms. It targets the tumor cells to keep it from growing. She is going to look into some medications that help reduce cortisol to use with the injection. She is hoping there has been another doc that has tried a combo somewhere before. 

The problem (going to try to explain in dumbed down way)- My tumor (Cushing's disease) makes a hormone called ACTH, this is the 'boss' or 'messengers' that also comes from our pituitary gland. ACTH tells the 'worker bees' aka our adrenal glands, to make more cortisol. You need to technically lower both hormones which come from 2 different body parts and there is no miracle drug that can do both. The drugs that are available do not have a lot of info because of the rarity, so it's a trial and error situation to figure out dosing/interactions. 

She did ask me to partake in a clinical trial she is leading. She believes there is a hormone in our bloodstream that could help diagnose and detect Cushing's in patients. Rather than all these other tests that help indicate the 'possibility' (for reference, typically they order 3-5 tests each time I have an appt). This hormone currently has no clinical significance and isn't measured or referred to in anyway. The study requires blood samples of those with confirmed cushings and those without to compare, before moving forward to phase 2 of the trial. So I once again signed my life away to be a test subject for research 🤣 why the heck not?! Worth it - if it helps them find a cure down the road for others!
XOXO