Hi I am 36 and live in country Australia.
I was diagnosed in 2006 when my baby was 8 weeks old.
Had surgery in May 2006 to remove 3 large tumors from my adbo, along with 3 section of my small and large intestine.( the diesese was in the myestenty of my bowel) had more surgery in 2007 to remove 1 small tumor from beneath my kidney and i had then been clear for 3 years just having blood tests and CT scan every 3 - 6 months.
I had a recent positive scan in June after feeling a bit "off" and now have 2 main tumors in my abdo and many small nodes, they tried to surgically remove these but when they operated thought there was too much diesese to be able to completely remove it all, so did not want to put me though a huge operation and recovery. So they only removed one small easy to get to tumor.
They tested the tumor for the Braf mutation and found it to be negative which was very disappointing.
I have just started DTIC (or dacarbazine) and have finished the first cycle. they will rescan me with a ct after 3 cycles to see how it is going. Currently my belly is quite swollen and tender but generally feel ok.
If the DTIC does not work they plan to give me Ippiliumabab in Melbourne.
I see a local oncologist in my home town of Albury and Prof Cebon ( Mel specialist in Melbourne). Being a country patient it makes it hard to get info on treatment options etc.
I am feeling quite desperate and wanted some advice on other options people have tried that I could also look at, that maybe I have not considered or been offered, and appreciated any info.