I would like to thank all of you readers/followers of this blog for your thoughts, prayers, and concern. I started this blog as a way to update my health status for those interested and share some personal thoughts.
My current status is: several large tumors in liver growing, tumor in brain-still there, but radiation looks to have been effective, tumor in the bone of my hip has no change, the latest discovery was in November at NIH/NCI when a tumor was found outside the liver in the abdomen, between the liver and the stomach, it is thought to have come through the lymph node system. This is the discovery that prevents any further PHP surgery, which was actually effective. This new tumor pushes on my stomach and prevents me from normal eating (not a bad thing), causes me alot of pain, and when combined with the liver pain really drains on me.
I was scheduled to return to NIH/NCI in February but global warming snow storms prevented that. There is not really any course of action for me at this point. I have purposely avoid standard chemotherapy due to all the side effects and lack of real results. PHP showed promise because of the delivery system that sent chemo drugs directly to the liver and not anywhere else. The brain tumor was discovered after I had taken 2 cycles of oral chemo, so I said no more. The newest thing out there is gene type therapy where the can attack the cancer genes, this is very experimental, called B-raf, and I am trying to test into this clinical trial- you must have a curtain set of blood and gene sets.
As for the last 2 months, they have been up and down. I have constant pain in my side from my liver, have a constant upset stomach, and at least twice a week can't keep food down. I have been fortunate through all of this to have not had weight loss (although I needed it). Radiation on the brain caused my hair to thin in the back and although I used to have blonde hair it is now brown. But the last 2 months has started to effect my weight, strength, and stamina.
Let me be clear, this blog is for information, I am in NO way complaining. I am blessed! The survival rate for metastised melanoma is 6 mos-2 yrs, I am at 1.5 years and looking forward to many many more. I have great medical care and great faith. You can know many things, but when the test comes what do you really know?