Thursday, October 1, 2015

The Cancer Coaster Continues...

Hey everyone!

We arrived in NYC last night. We got our hotel from Hotwire to save some money. That means no elevator, a room on the 4th floor, and a bed that feels like you're sleeping on the boxsprings. Brian is super happy with my choice. Oops! Anyways, we had scans last night and ate a yummy dinner. The nice, older couple next to us were super friendly and kind.  While we are eating, we look over and the man is choking. We were ready to help and they asked for it. Brian patted the man's back while I instructed the man to cough and make sounds, and we made sure he was fine. Our server was so happy with our help that we got FREE dessert! Very eventful.


This morning we had an appointment with our surgeon. He informed us that they had the pathology results after testing the mass they took out in July.  It turns out Brian does not have a sarcoma. He has melanoma.  He was NOT misdiagnosed.  Looking back at my notes from our first meeting in November, the oncologist in NYC actually said, "I want proof that it's a sarcoma and not melanoma". When you only sample a small part of the mass, you only get a small sample of the bigger picture. After seeing the whole picture, everyone is "still scratching their heads." Brian's mass has some qualities that match a sarcoma and some that match melanoma. There is one special mutation called BRAF.  This mutation causes the pathologist to know that is is 100% a melanoma. Having BRAF is a good thing (I will explain later). We were confused by this information but were reassured to still be hopeful. 

Next on the agenda we had an appointment with the MSKCC oncologist. In the meantime, I called our best friend, our oncologist in Jacksonville, Dr. B.  He reassured me and told me that he will still be able to work with us. I don't know honestly what we would do without him. He calmed some of my fears which was necessary while we waited for our next appointment.

We then met with the oncologist here in NYC. She gave us some great information.  Melanoma is not always caused by the sun and can be caused be your own genetics (your own cellular make up). Melanoma and sarcoma are treated very differently. The chemotherapy drugs Brian received are never used to treat melanoma. However, Brian has had a fantastic response. After testing the mass, they found that Brian had 90% response, meaning 90% of the mass was killed by treatment. This is amazing. Also, Brian's adrenal masses are still shrinking as well.  This is awesome news.  So although we were treating what we thought was sarcoma, thank goodness we did because the results were great. Can't help but know that's a God thing.

Even though chemotherapy was working so well, there are newer and better drugs that have recently been developed to treat melanoma.  Brian will begin immune therapy IN JACKSONVILLE. Research shows people with the BRAF mutation have excellent response to immune therapy to the point that the masses can totally go away. It sounds like there will be limited side effects and Brian will not have to miss more than a few hours of work every three weeks. The financial strain of missed wages and trips to NYC will be a thing of the past (we hope!).  Again this is another blessing.  We thought we might still want adrenal surgery, but without masses to treat, the meds would not be approved by insurance. So we will do what our doctors think is best for optimal results. They've been right so far!

So what now?

We fly home tomorrow morning. We will meet with Dr. B. We will do what is best and return to life as normal.  We will keep MSKCC updated on Brian's progress and check back in with NYC in 6 months.  Brian has given permission for them to test and study his mass. Hopefully his case will help so many others on the cancer coaster too.

We love you all and are daily grateful for our village that has supported us for almost a year. We truly cannot express our gratitude in an adequate way. Just know you are appreciated!


  1. Wishing you all the best from Garden State. Sending lots of prayers and positive energy.

  2. Keeping you in my thoughts and prayers. Stay strong to both of you. Cindy B.

  3. Keeping you in my thoughts and prayers. Stay strong to both of you. Cindy B.

  4. Keeping you in my thoughts and prayers. Stay strong to both of you. Cindy B.