SFO Patient Conference

SFO--Pier 39!A couple of updates...  I attended the NORCAL's (Northern California Support Group)  one day patient conference in San Francisco.  It was a one-day conference so I thought it would be a great excuse to go to San Fran!  No, really, I wanted to go to the conference and meet some other real "noids" and hear some of the to docs talk.  Dr. Liu from Nashville (Vanderbilt) was there as well as Dr. Wolin from Los Angeles (I think Cedars-Sinai). It was a packed conference with over 100 people attending.  I flew in with a friend of mine on Friday night so we had all day Saturday to play!  It was a blustery windy and cold day at the wharf but it was nice to see green grass and the sun!  We hadn't seen much of the sun here in Utah for about a month.

I did learn a couple of new things at the conference.  A bit about radiation and how much our bodies can take.  This pertains to both PRRT and SIRT (sir-spheres, thehttp://www.prrtinfo.org/ra-spheres).  You can only do so much so it might not be the best to do it early in your treatment but of course it depends on the severity of your disease. It made wonder if I should wait on the sir-spheres (I have more news on that later).

I haven't talked much about PRRT or PRRNT yet.  It stands for Peptide Receptor RadionuclideTherapy.  It is basically using a radioactive peptide that binds with the receptors on the tumors to deliver a dose of radiation.  That is a very simple description.  This is a great website about it: http://www.prrtinfo.org/.  Unfortunately, it is not FDA approved in the USA and only one place here does it.  Excel Diagnostics in Houston, TX.  Insurance generally will not pay the $60-$70K cost of roughly 3 treatments.  The best places to get treatment are in Europe, where they have been using it (and where it was developed) for around 14 years.  The cost is much less as well.  About $12K per treatment.  Again, insurance does not generally pay although there are a few patients who have gotten reimbursement for some of the costs.  It is mainly a systemic treatment but they are starting to use it as a liver only directed therapy as well.

I did not realize that you can only do so many radiation-type treatments.  Your body can only take so much. I think it was Dr. Liu who said that with sir-spheres, only one or two times and that's it.  The liver "remembers" and can become too toxic.  Same with PRRT.  About 4 treatments although they are starting to do lower dose with a then greater number of treatments.

I got to meet one of the lovely ladies I am in contact with through FaceBook.  A few others as well.  It is so nice to be able to meet in person!  I wish we had had more time to chat after the conference.  We left right after to get back to the hotel and grab our luggage then head to the airport.  After checking in and getting to the gate, we found out our flight was cancelled due to the airport being closed in SLC because of SNOW!  Long story but we did make it home.  I got in the house at 2:30am.  What an adventure!

On another note,  I talked to Dr. Kim again. He is the liver surgeon that I met with a couple of weeks ago.  After this conversation, I am feeling much more positive about the possibility of surgery.  He said that he felt he could get 90% of my tumors out!  That is really good news.  I am now excited to go see my Oncologist on the 5th.  I will let you know how that goes!  Also, I got my octreotide level back.  It is 2,176. Normal range is 2,500 give or take 1,500 (a big range-I think).  My Pancreastatin is 333 with a normal high end of 135 so still a bit high but lower than it was.  I don't know my CgA yet but all my other blood work looked pretty good.

I hope you are all well.

Cheers!