NinerStrong:Mike Fights Rare Cancer

Mike is a happily married 35 year old police officer with 6 year old twin girls and recently learned that a rare cancer called sarcoma has spread to his lungs.

Sarcoma? What the heck is that?! We had never heard that word prior to October 2009, when we learned that my brother, Mike, was diagnosed with sarcoma. Sarcoma is cancer of the bone or connective tissue - there are about 50 different sub-types of sarcoma. And, sarcoma is rare - 1% of adult cancers are sarcoma and about 15% of cancer in children is sarcoma. 

Mike's sarcoma is called clear cell sarcoma (CCS) - diagnosed on average about 6 times a year world-wide. In October 2009 a podiatrist removed what was thought to be a benign bump on Mike's foot. This bump had been there for at least 5 years - doctors had dismissed it until Mike's shoes were very uncomfortable and then they decided it should be removed - but only to relieve the discomfort. As he went into surgery he was told the bump was 99.9% benign. 

Mike quickly learned that the tissue inside the bump on his foot didn't look like normal benign tissue, but it took awhile to get a firm diagnosis. On October 19, 2009, after Mike's tumor had been studied by the best pathologists in the country, the National Institute for Health confirmed that Mike had clear cell sarcoma.

The news was not good. CCS, we were told, typically presents in the limbs of 20 and 30 year olds and does not respond to chemo or radiation. Mike's only option was "radical resection" - so he had a portion of his foot amputated (hence the term Niner - as in 9 toes). Even with the amputation, the statistics in the few and far between studies that we could find were grim - 50% chance of living 5 years and a 10% chance of making it 10 years. 

After the surgery to amputate a portion of his foot, it took Mike 1 (one!!) physical therapy session to get the okay to go back to police patrol work - a feat that doctors warned would likely take months. And then he became an avid cross-fitter. He wanted to be in the best shape of his life in case this ugly beast ever returned.

This past June the ugly beast returned. Mike had gone in for a somewhat routine exam that was a condition of employment.  He had a conditional offer of employment with the big leagues of law enforcement (one of those 3-letter federal organizations)  - but had to pass all the physical fitness tests and then had to have a routine physical.  In mid-May he passed the FBI's physical fitness test, a few weeks later he passed the polygraph and oral exams.  And then in late June he went down to the neighborhood health clinic for what should have been the easiest of all of the hurdles - a routine physical - and that's when everything went haywire.

Unbeknownst to him, Mike's left lung had filled up with fluid due to tumors that looked like a bushel of grapes all over the lining of his lung. Since amputation isn't an option this time around, we traveled the country to the best cancer centers looking for something that might work for Mike.  He visited with doctors at the University of Michigan, Dana Farber and MD Anderson.

After a lot of research and weighing different options (many options were drugs that had never been tried in humans), in September Mike started an immunotherapy treatment called keytruda.  Keytruda was recently approved by the FDA for melanoma, but hasn't been tested on clear cell sarcoma. His treatment is being coordinated between the University of Michigan and MD Anderson.  

We are hopeful, but scared.  We just learned that the cancer has spread further up in the cavity of his left lung and he also has 3 small spots on his right lung.  

Bills are quickly adding up and we need some help. Specifically, we will continue to incur travel costs for Mike's out of state appointments with his oncologist and Mike needs some help to offset costs that are not covered by his heath insurance (the keytruda infusions each cost $29,000 and we have not received word yet on how much insurance is going to cover). Please consider giving $5, $10, $25, $50, $100 or any amount during this expensive and trying time.   And even if you can't give, please consider sharing his story - sarcoma very much needs exposure and awareness.

If you want to follow Mike's progress, he has started a blog and we will also post periodic updates here. Thank you so much for your continued prayers and for your generosity.