Article previously published in the Cutaneous Lymphoma Foundation's Forum Fall 2011 newsletter.
It takes me just five words to start reassuring newly diagnosed cutaneous T-cell lymphoma (CTCL) patients: I’ve had it since 1997.
When newcomers to the CTCL-MF Listserv are in a panic mode, I note that most Stage IA patients have a normal lifespan. That status hasn’t changed for me. I work, play drums, compete in hockey and softball, go cross-country skiing and travel actively with my wife, son and daughter.
I understand the stress and sense of chaos that follows diagnosis. Initially, I wasn’t worried when a dermatologist took biopsy samples after examining itchy red spots on my hip 14 years ago. But, when he later said the results showed atypical cells, I was really concerned. That was a tough time because I didn’t know what might be ahead.
I now realize I was lucky and received top-rate care. Dr. John Melski, who works at the same Marshfield Clinic in central Wisconsin where I’m a physical therapist, had cared for CTCL patients and apparently suspected that might be causing my rash. He initially prescribed topical steroid creams, performed additional biopsies at six-month intervals and briefly prescribed Targretin® (bexarotene) gel, which caused serious dermatitis irritation.
Periodic cell-testing of the quarter-size splotches, which spread around my waistband and became very itchy, continued for seven years without a definitive diagnosis. Then, at a 2004 appointment I assumed would be routine, Dr. Melski got my attention when he said: “I’m drawing a line in the sand. I believe you have mycosis fungoides,” the most common type of CTCL.
Though not a total surprise by then, it still was shocking to hear “lymphoma.” I thought my kids might not have a chance to know me. I married a high school classmate, Jennifer, and our children were just 3 years and 7 months old at the time.
Finding the Cutaneous Lymphoma Foundation, which popped up repeatedly during online searches, was especially useful. Clear, comprehensive explanations filled my need for information about treatments and prospects.
Ultraviolet B (UV-B) light therapy, which began almost immediately, was received three days a week for more than a month. That seemed to eliminate everything except two or three visible patches – an encouraging turn until biopsies showed light radiation didn’t penetrate enough to hit all CTCL cells.
The next step involved longer-wave ultraviolet radiation (UVA) and Psoralen pills, which make the skin more sensitive so rays reach deeper. The combination is called PUVA therapy (pronounced pooh-vah). This also began with three weekly sessions, tapering to twice a month and then monthly.
That ongoing approach has eliminated visible rashes since late 2005. Psoralen tablets, taken before each monthly light treatment, cause nausea. Yogurt and stomach-settling medication helps, I learned through the CTCL-MF Listserv, a free online support group promoted through the Cutaneous Lymphoma Foundation. That forum connects me with a knowledgeable community for giving and getting support. It’s a relief to communicate with patients and caregivers who know what I’m going through and who share information that can be used right away – such as creams and bath salts to relieve itching.
As a physical therapist since 1995, I’m familiar with some conditions – but not this one originally. Thanks to the Foundation’s website, my education moved along much faster than if I had been reading on my own. I quickly realized Dr. Melski’s care met the gold standard, and I was impressed when he asked what patients reported online about their treatments.
I see my dermatologist quarterly and am checked twice a year by Dr. Lawrence Clouse, an oncologist who’s also at the Marshfield Clinic in our city of 19,000 people. In early 2010, he detected an elevated white blood cell count. A bone marrow biopsy indicated chronic myeloid leukemia (CML), apparently unrelated to my CTCL-MF. Neither of my doctors found any case in the medical literature of a patient with both diseases.
The news hit like a whammy, but turns out to be less dire than it sounded. Instead of a risky bone marrow transplant, the main treatment until a decade ago, CML now can be controlled through daily oral doses of a drug called imatinib mesylate (Gleevec®).
So I’m lucky again and in good hands. Crazy as it sounds, CTCL actually has had a positive impact. I used to focus on making things happen and felt I could control all of my life. Readjusted priorities focus on what’s most important, such as family, friends and health.
I’m also a more sensitive physical therapist, better able to understand a patient’s point of view. I avoid jargon and terms that may go over their heads. I take more time to answer all questions thoroughly, and I’m more understanding of frustrations that may make some patients seem difficult.
Nearly a decade and a half after this journey began, I’m very optimistic. I do anything I want, as many of us assure the first-time visitors at the CTCL-MF Listserv.
If you would like to share your story, fill out this simple online form and a Foundation representative will be in touch with you soon to discuss next steps.