This is my first time posting, after lurking for a while..
My husband was diagnosed Dec. 2008 with stage 3B after he had a mole removed on his chest, it had spread to 2 lymph nodes so further removed another 30 nodes in that side of his body. He did the high dose interferon and then was given a clean bill of health for almost a year.
June 2010 - we went to the emergency room because he had severe chest pain, and after a CT scan and x-ray they told us he had a soft tissue tumour in his upper left back area that was pressing on nerves and causing the chest pain. They also discovered 4 lytic lesions on various bones in his back and one in his jaw.
He tested Braf positive so our doc tried to get him into the Roche trial but he was "randomized" ( god i hate that word!) to the dacarbazine arm. He's done 2 cycles of that and he had scans on the 11th, the trail nurse said the scans show some progression. We see the doc tomorrow to hear the full story.
We also meet with a new doc tmo to see if he can get on the GSK Braf/Mek trial, which our current doc thinks is likely. (he reserved a place for him on the trial even before the 2nd cycle of dacarbazine)
Just wondering if anybody else out there is doing the combination trial? side effects? is it working?
Also any advice on how to fight the fatigue that comes with morphine? My husband is on 30mg slow release x 2 a day, with 5 mg for breakthrough ( which luckily he rarely needs to use), but he could sleep for 12- 14 hours every day.... or longer if i don't wake him up.
He's also seeing an integrative oncologist ( chines herbal medicine) who is a medical doctor just trained in chinese meds as well who has him on a herbal tinture that seems to be helping him. He doesn't look sick or feel sick, just major fatigue.
We also have cut out, gluten, sugar and cow dairy.
We're doing anything we can. He is so positive and convinced he's going to get better, it's just a matter of time and the right meds... i think sometimes i'm having a harder time dealing with it than he is... lol
Oh well... any and all advice or info appreciated.