A quick update

I haven't posted anything in a while because there isn't much to tell you about.  I did get some blood work done last week and so far, all is good.  CBC and blood chemistry.  Liver function tests included in the blood chemistry and those are all normal!  I haven't seen the CgA (tumor marker) results yet but it should be available this week sometime.  My Pancreastatin and (for the first time) Neurokinin A was sent to ISI in California so those take 3 weeks to come back.  I probably won't know those results until I meet with Dr. Whisenant on the 19th.  I might be able to get the results through LabCorp. but I'm very frustrated with their website right now.  I've tried to log-in all morning but it wont' take my password and when I reset it, it resets my Microsoft password. Weird.  Frustrating.  I give up!

I did get my appeal approved for the last CgA test I had done through my old insurance.  Talk about stupid. They paid $22 of the $236 charge, which is the "allowed" and "contracted" amount.  I owe nothing.  So, if no insurance, a simple blood test costs over $200!  Crazy.  At least with BCBS, I don't have to worry about pre-authorization for blood tests!  Duh.

I am still not sure about NOT having a 6 month scan.  Dr. Whisenant said he didn't think I needed one unless by tumor markers increased but that it was up to me.  I know I probably don't need one but I'd still like to know what is going on. I know it won't make any difference treatment-wise unless I had a lot of progression or new tumors (very unlikely) and we should see that in the tumor marker blood tests first.  I have read other patients stories about having normal blood tests and seeing tumor progression anyway so I still worry.  I guess I will talk to the doc about it when I see him.  It's my life after all (and my money too)!

If you are curious about Neurokinin A (NKA), it is more of a prognostic blood marker test.  I found this in a study paper:

Turner has shown in a retrospective study using a clinical
database comprising 117 midgut carcinoid patients that NKA
is an excellent prognostic indicator. In the patients who
presented with NKA > 50 ng/l (45 pmol/l) survival at 5 years
was 18%, whereas in the group who presented with NKA
levels lower than this threshold the survival at 5 years was
70% 

I think the prognosis is a bit better than listed above.  As much as 84% at 5 years for the <50 group.  I wanted this test run a long time ago but didn't push for it.  I didn't have to push at all. I just asked him (Dr.) to do it and he did.  It'll be interesting to see what my results are.  Although I don't put much stock in just numbers and statistics.  We are all so different.  Every patients disease seems to take a different clinical course.  Its one of the reasons it's so hard to treat.