I have been trying to follow everyone's posts - but it seems so busy out there. We also have had a busy summer. To recap:
Spring scans showed a nodule on Derek's left lower lobe, surgery confirmed it was mel and of course stage IV
PET/CT after surgery showed uptake in two more spots on left lower lobe, 1 in right hilar region of lung (uptake of 62), and 1 in liver
Our onc in Kingston suggested IL-2 in Buffalo or a clinical trial with IL-21 vs DTIC in Kingston. She veered away from IPI saying she had heard more about side effects then success (which I thought was a little strange).
We went to see an onc at PMH in Toronto and felt really good about this appointment. We discussed Derek's history at length, discussed some possible options, he doesn't like IL-2 because of toxicity and has had bad experiences with it (Derek really didn't want to do this anyway), but we did settle on a sort of loose Plan A, B, and C.
Derek will be rescanned this week along with an MRI of brain (which is frightening), he is unfortunately BRAF negative but they are testing him at PMH for the NRAS mutation so that he could qualify for their fall phase Ib trial testing BKM120 (P13K) and GSK1120212, then he will start IL-21 vs DTIC in Kingston, if randomized into IL-21 and it doesn't work he could begin another chemo drug in a trial at Sunnybrook, then onto either ipi or the new trial at PMH, if in DTIC and it doesn't work we will go right to ipi or the trial.
Just looking for some thoughts - good or bad comments about our 'plan' - I have some confidence that this is the right path for us. We have a 3 and 1 year old and Derek wants very much to be close to them so this will allow that - I just don't want him to miss anything.