@li4040 Hi there, I'm sorry to hear that. Do you have diffuse TGCT? Mine was too large for surgical removal initially but Turalio for over a year shrunk it well enough but it came back 1 1/2 years later.
On the Romvimza for a year and you only take it twice a week which is nice aces they now have 3 different dose sizes, i was on the max 30mg and it get the tumor to shrink a little, it's small.

Side effects came on gradually. Still have to watch the liver enzymes but i did get the swelling around my eyes which was tolerable. The fatigue makes it hard to do anything after working a full day. My cholesterol went up for the first time in my life but it wasn't being monitored and i wound up needing my gallbladder removed so please be sure your doctor watches for that as it is controllable but my doctor dismissed that and the pain i was having.
I am grateful the drug is available so we can keep our tumors from increasing but i should have pushed more and advocated for myself better.
It is very effective medication and i probably should have been placed on a lower dose like 15mg due to the side effects but i didn't know that was an option until recently.
Please let me know how you do as i found this easier than Turalio's side effects.
I recently got a2nd opinion at Mayo Clinic and the doctor wants to see my recent scan to see if radiation might be an option.
I hope your tgct journey leads you to eliminating your tumor. 🙂
All the best, Nancy