Proposed FDA Regulations of 'Lab Developed Tests': Could Cause Harm to Patients

I received this information in another post from a fellow blogger: Cancer....an unexpected journey

Please, click on the link and sign the petition. Change.org

I don't want to plagiarize Luna's post but I want to say that most NET Cancer patients receive very specialized blood tests that are not "standardized" tests and could potentially not be covered by insurance if this proposed regulation goes into effect.  I receive one that it not considered a "standard" blood test that gets sent to a specialized lab in California (ISI) and there are several more that I could get as well (a few I have had once but have not repeated them yet)...

If you are so inclined, please contact your Congressional Representative and your Senators to let them know that these proposed regulatory measures should not be passed.  You can even email them!
To find your Senators:

http://www.senate.gov/general/contact_information/senators_cfm.cfm

Find your Representative:

http://www.house.gov/representatives/find/

Email President Obama/the White House:

http://www.whitehouse.gov/contact/submit-questions-and-comments

This can affect those with all types of cancer and rare diseases for which standardized testing may not be available.

Speaking of blood tests...

I had my 6 month  tests.  Everything is normal.  My CgA is the same but my pancreastatin has gone up.  It's now at the very top of normal.  (0-135 is the range and mine is 135).  That's a small increase but I'm sure nothing to worry about.

I meet with my oncologist tomorrow.  I have to find out if they really are on my employee's health plan now.  If so, I will switch.  It'll save me some money-I think.  Not much but a little.

Name change/blood tests

I don't know if this matters but I changed the name of my blog to: mylifewithcarcinoidcancer.blogspot.com  

I didn't like just having my name up there...  

I had blood work done last Friday.  The cancer clinic actually had my Z-tube for the Pancreastatin test so they did it right there and will send that one out. The only thing I don't like about them doing it is I don't get my results as quickly.  When the hospital lab does it, the results are online usually within a day (for the regular blood work like my liver function tests, CBC, etc.).   When the clinic does it, it may NOT get posted to my personal health record (online with them) for days and days.  I know the tumor marker tests take longer (CgA about a week and Pancreastatin about two weeks), but really, can't you get my other test results up there a little sooner?

I am curious what my WBC (white blood count) and Granulocytes are this time.  WBC was high and granulocytes was low.  My doc did not say anything about it at the time.  If they are still high/low when I see him in November, I'm going to ask...  

Here's wishing/hoping for my markers to remain low!  I'm not sure when I'll get my next scan.  Probably January or February.  This will be the longest I've gone between scans since my diagnosis in June 2012 (my first blog post).