Los Angeles Update:

We had a good week in Los Angeles last week. Besides a successful doctor’s visit, we were also able to have a little bit of fun, which was such a nice break to take my mind off things.

In Los Angeles, we met with one of the country’s leading experts in Carcinoid cancer, Dr. Wolin, at Cedars Sinai. Because carcinoid is so rare, many oncologist will not even see it during their career and unfortunately there are no specialists here in Utah for it. So I feel very blessed that we were able to see Dr. Wolin as I know it is something that not everyone gets to do. At Cedars, Dr. Wolin runs a carcinoid clinic as well as 10 clinical trials. It was a lengthy and informative visit and to be honest felt really good to talk to someone who deals with this on a daily basis.

While we were down there, we made another trip to the hospital to have some blood work done to start tracking specific markers in my blood. The details of the visit get quite technical, but what we settled on as the next step is to get another scan done. Dr. Wolin would like me to have what is called a 68-Ga DOTOTATE scan. This scan is part of a clinical trial and not yet approved by the FDA. It is only located in 3 places in the US, one being UCLA Medical Center. (While not approved sounds kind of scary, there are actually no FDA approved treatments for carcinoid cancer right now, mostly due to the fact that it is very rare so it doesn’t have the funding or large number of people for clinical trials that other types of cancers do). The awesome things about this scan, as opposed to the standard scans we have now, is that it can detect carcinoid as small as 2 mm in the body with a much clearer picture. Having read many research papers in school, it is a bit funny being on the other side of it now, but I’m grateful that we have new technology to catch things at the earliest onset.

So we will be heading back down to Los Angeles next week for the scan and a follow-up appointment. Our hope and prayer is that they find nothing on this scan and then we go from there to see what’s next. While this is not in my nature, one of the lessons I am learning from this process is to take life one day at a time because I feel like the plan changes each week.

I’m so glad that my family was able to be there with us (although the staff was a bit surprised by my entourage J ). I realize more and more that I would not be able to get through this without the support of my family and friends. I feel blessed by the donations that so many have made, which allow us to see these types of doctors and get the best care. I am also very grateful for all of my doctors, especially my surgeon here who made the referral to Dr. Wolin and continues to communicate with him and follow my treatment.