Lainy; We are not going to the second onc because he was in Cleveland at Cleveland Clinic and we live in the Columbus area which is 2 hours away. His diagnosis and treatment plan was exactly the same as the onc we are seeing at OSU. I think the only difference was the attitude of each doctor. Although our onc here is a young woman and not what I would call "warm and fuzzy' she does seem to know what she's doing. I am not willing to let my husband just give up and start dying no matter what his doctor has said about the life expectancy of her patients. One of the things I have learned through this (and some other medical circumstances) is that you have to be your own advocate. I want to be an involved participant in my husband's care and if something doesn't make sense to me, then I question it until I get the answer I want.
Ken is getting Gemzar and Carboplatin every two weeks. I know protocol is Gem and Cisplatin but he was already experiencing tinnitus and has some hearing loss so his doctor didn't want to give him the cisplatin because one of the side effects is hearing loss and tinnitus. So she went to carboplatin which is a step down from cisplatin. It's working pretty well and he's not having hardly any side effects (the nasty ones anyway) so for now we are sticking with this combo. If it stops working and the tumors start to grow, we will reassess and try something else.
Thanks for the encouragement to be strong. My friends tell me I will be okay because I am so strong. But they aren't with me when I'm melting down and wondering how I am going to do this. I will make it through all this because I have to, for my children's sake if nothing else.