Man with Rare Condition, Denied Certain Treatment

Posted at: 05/21/2013 10:42 PM
By: Steph Crock

(ABC 6 News) -- He’s been fighting an unknown disease for the past 5 years. After finally getting some answers, the medication he needs is no longer on the shelves.
Mark and his fiancé Stephanie met in college out in Pennsylvania. After going to countless doctors on the east coast, the two moved closer to his hometown in Austin, so he could get treatment in Rochester at Mayo Clinic.

"I lost 50 pounds in the span of three months maybe, and night sweats, fever of 103 every night," said Mark Cavanaugh. It was a condition that stumped numerous doctors over a span of 5 years. "I wasn't absorbing my food, I wasn't absorbing my medicine, I mean it was a nightmare, it has been a nightmare," said Cavanaugh.

He suffered night sweats, bone pain, nausea, and just about every type of symptom you can imagine.

"We've been together longest with mark being sick than with him being healthy," said his fiancé Stephanie Castellano.

"You don't know how much longer you can keep chugging along," said Cavanaugh.

On the brink of losing hope, he finally got some answers. "They found some cells on my skin in a biopsy and they thought to send me to an oncologist and hematologist and that's where they kind of figured out that it was a T-cell disorder," said Cavanaugh.

Though not leukemia, a medicine used to treat that form of cancer was prescribed to Mark. “This drug, this Campath, targets T-cells better than maybe any of the other drugs I've been on," said Cavanaugh.

He was finally starting to feel relief after years of pure agony. "I've been on it for just two weeks and already my fever is are gone," said Cavanaugh, but then, another speed bump. "They pulled the drug off the market and now they're re-purposing it and they're going to put it out there just for MS patients," said Cavanaugh.

Now they're trying to send a message to the manufacturer of this drug, but once again, another waiting game. "It's hard to keep fighting when you're just trying to survive,” said Cavanaugh.

He's come a long way, figuring out what's wrong and what medicine could help him. Now, it’s just a matter of getting him the help he needs. "We are very hopeful," said Castellano.

The reason the drug manufacturer won’t give him the medication, there's a fear that he would have a bad reaction and that would interfere with the rollout of the drug, because of certain regulations, they won’t even know when the drug will rollout, could take weeks, even months.