muchoepidermoid of the lung

I am new at this and not sure if I am duplicating this or not.  If so, I apologize.  My husband was diagnosed with muchoepidermoid of the lung back in 2011.  We are told that having this type of cancer in a non-mucous area is extremely rare.  Two years later he had surgery to remove something off of his thumb and it too was this same cancer.  Certainly not a mucous area of the body.  Our doctors are scratching their heads regarding treatment because of the rarity of this cancer and the areas it has presented itself.  In 2011 he had 2/3 of his right lung removed and he is a superman.  Other than 3 weeks of recovering he never missed worked as a construction worker and through all of his treatments he has continued to work.  He has had 4 months of the typical chemo where he had numerous side effects.  It stopped the growth but did not shrink it.  After four months the doctor's decided to put him on Tarceva, the chemo pill but after 2 1/2 months of this it has grown (slowly, but still growing).  We are now waiting for approval from another drug company to possibly start another type of chemo pill.  Any information about this awful cancer would very much be appreciated.