Thank you so much for sharing this! I think even the latest survey paper on TGCT still would present surgery as the main approach and only briefly mention drugs and radiation therapy, probably because of the delay in academic paper publication. So it’s really good to hear from a professional talking more about the newest development in medication treatment for TGCT and it’s great to hear the that the new drug might have lower liver toxicity!
I have this cancer. Biopsy confirmed malignancy. Incredibly rare. Two tumors. One in my parotid gland and TMJ, connected to another by my skull base. Surgeons referred to it as a “dumbbell”. Two grape sized tumors. I had surgery back on February 21 a few months ago. The tumors were removed successfully and facial nerve was preserved although it hasn’t recovered yet (told 3-6 months). TMJ was removed as well as parotid gland and portion of my skull. Flap was taken from my thigh and put over prosthetic by facial plastics team. Currently on Turalio and am doing very well. Thank you for posting this content. Very hard to find content on my disorder. I’m a 51 year old male in relatively good health with ZERO pre existing conditions or co morbidities. ICU for 7 days. Released in 10.
I’m sorry to hear about the rare cancerous case of the tumor and happy for you that it’s treated in time and you’re doing well now! Thank you for sharing your experience!
Thank you so much for sharing this! I think even the latest survey paper on TGCT still would present surgery as the main approach and only briefly mention drugs and radiation therapy, probably because of the delay in academic paper publication. So it’s really good to hear from a professional talking more about the newest development in medication treatment for TGCT and it’s great to hear the that the new drug might have lower liver toxicity!
I have this cancer. Biopsy confirmed malignancy. Incredibly rare. Two tumors. One in my parotid gland and TMJ, connected to another by my skull base. Surgeons referred to it as a “dumbbell”. Two grape sized tumors. I had surgery back on February 21 a few months ago. The tumors were removed successfully and facial nerve was preserved although it hasn’t recovered yet (told 3-6 months). TMJ was removed as well as parotid gland and portion of my skull. Flap was taken from my thigh and put over prosthetic by facial plastics team. Currently on Turalio and am doing very well. Thank you for posting this content. Very hard to find content on my disorder. I’m a 51 year old male in relatively good health with ZERO pre existing conditions or co morbidities. ICU for 7 days. Released in 10.
I’m sorry to hear about the rare cancerous case of the tumor and happy for you that it’s treated in time and you’re doing well now! Thank you for sharing your experience!
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