Hiya fellow warriors
First diagnosed in 2018 with the rarest of cancer primarily in the parotid, unfortunately I had originally took facial paralysis in 2015 and the cancer wasn't picked up on scans, because of this I was told it was bells palsy, not giving up I was finally listened to and sent for an mri when the cancer was detected, I had major surgery, full parotidectony removal of temporal bone, lymph nodes and surrounding tissues with no treatment being an option as the cancer being so rare. The cancer popped up again in 2019 in my lymph nodes and my biggest fear happened in 2020, it got my brain, the cancer I have (myopathelial carcinoma) is a very rare, very slow growing cancer so I opted to go on an early trials treatment programme where bits of me was sent worldwide, literally. A match was found in America.... This form of cancer is more common there and is treated with immunotherapy, the exact treatment has been offered to me here in the UK, I have signed the dotted line and it is all systems go early new year, now don't get me wrong I am the bravest person I know but honestly with the first of many treatments fast approaching I can hand on heart say I'm terrified, I think it's just the not knowing..... What will happen, what to expect, am I doing the right thing... Which deep down I know I am but, my head is a mess at the minute..... If anyone has any words of wisdom xx
Hi MC
Welcome to the Community
Well what a mill you've been through. I'm glad the doctors have found something that offers hope.
Immunotherapy has generally fewer side effects than straightforward chemo and it has been achieving some spectacular results.
I hope it does for you.
Would you tell us what drug they are using if you feel up to it?
Dani
Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019
