Mycosis Fungoides 05 New Doctors New Diagnosis

 New Doctors ~ New Diagnosis

After 1.5 years, 4 biologics, countless biopsies, and gallons of creams and ointments, Tim's dermatologist referred him to a dermatologist/pathologist in Cincinnati at UC Health.

It took forever and many, many calls but in early July 2019, we finally got an appointment. YEA!

Getting to UC Health Medical Center from our home is not a fun venture. It takes about an hour with ridiculous traffic and construction (endless construction) through questionable parts of town. It makes for a really fun trip! (NOT)

As we waited in the exam room, we were cautious but hopeful. The nurse had us sit in certain chairs - we weren't sure why - but sure, why not. The automatic door to the room opened and in wheeled (yes, wheeled) the doctor. He had a motorized wheelchair that had all kinds of bells and whistles. As impressive as that was, however, it was the words that came from his mouth that impressed us. He took one look at Tim and said "you do not have psoriasis." "You have a T-Cell lymphoma called Mycosis Fungoides." 

OK ~ call us stunned. What is T-Cell Lymphoma? What is Mycosis Fungoides? We had the obvious questions and a ton more. But the Doctor was wonderful. During the course of the exam, it came out that Tim was taking Dilantin - a drug to control seizures. The Doc about came out of his wheelchair. He told Tim to IMMEDIATELY stop taking Dilantin. Apparently, there were a few cases where the drug could actually cause lymphoma. 

Unfortunately, you cannot just stop taking a drug that controls seizures. You need to see a neurologists ~ and we didn't have one. His previous primary doc kept up the prescription so there was no need to see a neurologist. CRAP!

We contacted his new primary doctor who was horrified to hear that he had been on Dilantin for over 30 years and she referred us to a neurologist. We were able to get an appointment relatively quickly and she prescribed a different seizure drug - Kepra - which is a much better drug with fewer side affects. She, too, was horrified to see him on Dilantin for so long. Apparently, Dilantin horrifies lots of people.

But...Tim started weaning off of Dilantin and onto Kepra. It took about 4 - 6 weeks to get it off it completely. Whew! He did have one seizure but they bumped up the dosage and things are going well now. (Thankfully)

But, back to Lymphoma. Dr. M. did more biopsies and set up a follow up appointment. We went back at the end of July and at that time, about half the doctors and interns at UC Medical Center came in the room to look at him...all at the same time...all in a small exam room. At one point, I counted 11 people in the room. It was wild.

Here's a view of what they saw:



The consensus was to start full-body radiation and the first appointment was scheduled for July 24, 2019.

What fun will this bring???

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