Hi, All  - 

My diagnosis is officially metastatic papillary thyroid cancer.  I got to see the films of my CT scan today and it shows tumors all through my lungs, but there's still a lot more lung tissue than cancer tissue and just knowing that makes me feel better.  It's also nice to know what you're up against.

There are 6 clinical trials that we're looking into.

The  two we're most interested in are using drugs that have proven successful with other types of cancer that they're now trying on mine.  These are also in pill form, so I have hopes that maybe I can do most of them in Lincoln.  Both of these drugs are tolerated well.

http://www.cancer.gov/search/ViewClinicalTrials.aspx?cdrid=499848&protocolsearchid=3197011&version=patient  This one is in Lexington, KY.

http://www.cancer.gov/search/ViewClinicalTrials.aspx?cdrid=502260&protocolsearchid=3197011&version=patient   This one has several locations, including Chicago, St. Louis, and Milwaukee.



The next most interesting ones both use IV drugs.  It's possible that this could be set up in Lincoln.

http://www.cancer.gov/search/ViewClinicalTrials.aspx?cdrid=396783&protocolsearchid=31&version=patient  This one is in NYC.  It's trying to slow the growth of the tumors and maybe make them more suseptible to radiation therapy.

http://www.cancer.gov/search/ViewClinicalTrials.aspx?cdrid=484383&version=HealthProfessional&protocolsearchid=3197011  This one is in Orange, CA.  It also is looking at the toxicity of this drug.  Not sure that sounds too interesting.



The last two are with completely experimental stuff.  That might make it less likely that something could be set up in Lincoln.

http://www.cancer.gov/search/ViewClinicalTrials.aspx?cdrid=517391&protocolsearchid=3197011&version=patient  This is a pill and it's being tested in Wichita, which is certainly the closest place of any of the trials.

http://www.cancer.gov/search/ViewClinicalTrials.aspx?cdrid=433150&version=HealthProfessional&protocolsearchid=3197011   This is a fairly intensive IV treatment.  It's available at Mayo's, in St. Louis, and in Jacksonville, FL.  (Why isn't anything in Miami or Orlando?  or Omaha???)


I still feel good and that's the main thing.  My oncologist will contact the trials in the above order and will see if at least some of it can be done in Lincoln, with maybe only an occasional trip to the study site.  Insurance won't cover the drugs, but it will cover the parts of the study that are part of normal medical procedure (e.g., CT scans, IV administration, blood tests).  Some trials have travel $$$ for the patients and there are also Angel Flights that might be available if we go with something that's further than I might want to drive.

Talk to you all later.

John

PS  Let me know if this is more info that you want or need.