Good Morning Karen...
Happy 4th of July! I hope you have a good day today. Thanks for responding and for your prayers. I do believe with all my heart that Christ heals.
To update you, I received my Chromogranin A results and it is elevated. However, only slightly. My gastroenterologist at Jefferson Univ. said he isn't too concerned. However, I callled the carcinoid specialist Dr. Woltering in Louisiana and was able to speak with him and he suggested I repeat it along with a VIP, neurokinin (sp?), and some other blood tests. He said any elevation is significant. So here I am...wondering how to tell the gastro. doctor I want these tests drawn....you know they all have egos and I don't want to step on his toes so to speak. He now wants me to go to a rheumatologist! I may ask Dr. Woltering to send me scripts for the tests and I'll take them myself to the lab and have the results sent to him. (Don't know if he'll do it because I'm not his patient...but I have nothing to loose in asking right?)
I am so sorry to hear that they can't find your primary. I have heard this alot with carcinoid patients. I am also sorry to hear your liver is so involved. Do you have a plan of treatment? Have you considered any alternative treatments? I know myself, that if I am diagnosed I will definitely go alternative. Have you ever heard of the Johanna Budwig Protocol? She was a world reknowned physicist from Germany who has had great success with cancer. As a matter of fact, she was nominated for the nobel prize seven times. I know of several cancer (including carcinoid) patients who are on her program. You should google her and the her protocol to see if it may be something you're interested in. My mother was diagnosed with Breast Ca with mets and she did all alternative medicine (to her doctors at Jefferson chagrin) and lived 33 years! They told her she was insane and that it was highly aggressive in nature. She and I spoke before Congress on a medical access bill for alternative medicine before the Government Reform and Oversight Committee and presented her case. There are many good sources out there. I would be happy to discuss what I know with you.
I don't know where you live but I hope your doctors are good. I will plan to see Dr. Woltering in Louisiana (his mother has carcinoid and she's in her eighties) if I am ever diagnosed.
If you ever want to speak privately...I would be happy to give you my phone number on a "private reply". I will pray for you as well Karen. I have faith...and it sounds as though you do too! God bless you...and thanks for responding. Have a wonderful day...look forward to hearing from you.