ACC is an extremely rare form of cancer. In fact, researchers estimate that only 200 to 500 people in the United States are diagnosed each year.
As a result, very little is known about the cancer or how to appropriately treat it. Two years and four months after being diagnosed Butch has gone through pretty much every treatment imaginable.
He has been through multiple surgeries, had organs removed and sat through multiple rounds of chemotherapy. Butch was in a trial immunotherapy that was cut short due to an unexpected surgery, and has tolerated long stints of painful radiation treatments. Tumor growth has been slowed, but remission has not been achieved.
Butch has reached a critical point where he has run out of standard options. What treatments are left are out of state, aren't fully covered by insurance and are extremely expensive. For instance, Butch's out of pocket cost for one six week treatment will be $40,000, which he'll need to make in weekly installments during the program in order to continue. That amount does not even take into consideration his living expenses while out of state.
It's easy to see why many people in his situation give in and quit. They feel as if they have no other choice. Butch is no different. He has the will to keep fighting, but also does not want to be a "charity case" or put people out for his sake, especially this time of year. He is extremely conflicted because he believes in himself and his ability to keep fighting this disease, but realizes the amount he needs is substantial and could put financial strain on people. He also feels that if he does not succeed, the money will have been spent in vain.
That could not be any further from the truth. I hope we show him through this campaign that the chance to fight is money well spent.
Last week, on Dec. 13, 2017, Butch went to Michigan to meet Dr. Gary D. Hammer the director of the Endocrine Oncology Program in the Comprehensive Cancer Center at the University of Michigan. The program is recognized as an international center of excellence for research and the treatment of adrenal cancer.
Dr. Hammer has given Butch some additional options to pursue, but the thought of additional chemo treatments and their unpleasant side effects weighs heavily on Butch's mind. Butch is also visiting adrenal cancer specialist Dr. Antonio Fojo in NY this week to hear him out and take his guidance into consideration.
There is no doubt Butch has a huge decision to make in the very near future. It is a decision many people will try and help him make, but one that he will ultimately make on his own.
Over a year ago we rallied and claimed "We Battle With Butchie.” That battle continues and it's time for us to stand up and shout it out again. Let's make it abundantly clear to Butch that he can pursue whatever treatment options he has available and that his only concern should be the fight ahead.
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