Dr. Robert A. Nagourney, MD
Mast Cell Sarcoma: Brittany Wnek
Our daughter, Brittany (16 years old) went through several serious surgeries in the fall for mast cell sarcoma.
Our son brought the tissue up to Long Beach on the evening of one of her initial surgeries back in July 2011. We talked with you by phone from the hospital, and via email.
Brittany has healed from all of her surgeries. We were eager to get her on one of the drugs that you had identified as an option for her. If you recall, she had 13 chemotherapies previously, radiation etc.; in addition to 10 craniotomies to reduce tumor growth near her brain.
I have to tell you our story in a nutshell. We know that coming to you was absolutely pivotal in finding options for our daughter. It is a miracle.
After much thought and prayer, we needed to make a decision in early December as to what treatment we should try. We decided not to do standard chemotherapy, and chose to look into the targeted therapies you had also recommended. We didn't want to affect Brittany's immune system. We wanted her to remain strong, and to enjoy her 17th birthday, Thanksgiving and Christmas if at all possible.
We reviewed your recommendations with Brittany’s physicians and for various reasons, Crizotinib was what we decided to pursue. Dr. Kim said that Brittany would have to test positive for ALK in order to be able to receive the drug. It was having remarkable effects with Lung Cancer patients who are also ALK positive.
Dr. Kim said that the staining for ALK is not normally tested by pathology for mast cell sarcoma, but she would ask them to do so with her tissue from July. Within two days, she had it tested, and Brittany was positive for ALK. Our insurance approved the Crizotinib without any red tape (unbelievable!). We had her on it by the first week in December.
Within 11 days, Brittany's tryptase level went from high 100's, and over 200 in the end of October, to 24. Since going on Crizotinib, her tryptase has stayed in the low 20's and teens. Her first set of MRI scans were done the first week of January. We were eager to see if there would be a correlation between her tryptase levels and the tumors.
The results showed that Brittany's tumors are reducing in size near her brain, and spine, and she has NO new tumor growth. Some tumors no longer show a signal on the scan. It is truly a miracle.
We will continue on with HOPE. We have never had a significant response to any mast cell sarcoma treatment like this for Brittany in 4 1/2 years!
Thank you for your encouragement, your expertise, and your willingness to work with Brittany's mast cell sarcoma tissue. Obviously, it was an extremely valuable investment. We have told two other people recently diagnosed with different cancers about you and your testing.
We are thankful that we were led to you by much literature that we read, by Ralph Moss (author), and others who mentioned what you do. Our initial contact was with Shari a year earlier.
Because of her help and thorough explanation, we were able to set it up this time on a Friday and Brittany's surgery was the following Monday. The surgeons and doctors we work with were very interested in the fact that we were sending Brittany's tissue to you.
Everything was on the line so to speak, and it all came together. Your suggestions have changed Brittany's life and ours. We still have much ahead, but we are thankful for every day.
Note: Brittany Wnek sadly passed away in August of 2014 with myelodysplastic syndrome – a chemotherapy induced dysplasia of her bone marrow. Brittany remained well on assay-directed therapy, Crizotinib, for nearly two years. She did not succumb to her mast cell sarcoma cancer but to complications from too many ineffective treatments. She is an example of the EVA-PCD functional profiling assay's capacity to identify unbeknownst gene mutations and effective targeted therapies.