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.


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