Wednesday, August 19, 2009

My Doctor to NIH: No you're wrong!

Dr Sharfman disagrees with NIH and said that he would not put me through another Il-2 course. He further clarified that he has no other clinical studies at his practice that he would be willing to offer me.

He did offer me a palliative treatment of chemotherapy.

It has been about six weeks since my last Il-2 treatment. Remember that it takes time for the immune system to respond even after that period of stimulation. There was a point where I could no longer feel the tumors in my stomach. I have since started feeling them again. I inquired and he did agree that it would be a good idea to get another CT scan done just to see where we are.

He suggested that I speak with Dr Kirkwood at UPMC and see what trials he has available. I told him about the UPENN BRAF trial that I was interested in. Though he had not heard about it, he thought that it might be a good study if I have the BRAF mutation.

I am working on getting back in touch with NIH to see where they stand with this news, but my guess is that I'll get nowhere with them.

I also emailed Gerson to tell them that I am ready to go. I've waited/ wasted six weeks. I would like to get the scan and BRAF testing completed first, but then fly to Mexico where I can sit on the beaches and drink juice while the doctors figure out a new allopathic plan.

I would not have been looking forward to another round of IL-2 anyway, but much like the NIH study, it would have been nice to have had it been my option to decline. Or maybe this is someone else pushing me to Mexico.

2 comments:

kelly said...

Dear Mike- I am sorely disappointed that Sharfman is denying you further IL-2 treatment. You are very young and I would think they would aggressively treat you. You always have a right to a second, third, fourth opinion. Do what you think is right for you, Amy, and your kids!!! Keep up the positive outlook and keep fighting! Take care. Kelly

Anonymous said...

Hey Mike -
Just wanted to wish you the best of luck in your pursuit. I appreciate your fight - my husband, who is much older than you, has stage 3B - recently dx'ed and goes to Dr. Sharfman also. I don't think he has the drive to fight this disease as you do, but we're praying for the best, and you are in my prayers also.
Nancy - Silver Spring