Boca Raton, FL
Article previously published in the Cutaneous Lymphoma Foundation's Forum Spring 2011 newsletter.
My story is pretty much like all the others.
Even a top-flight dermatologist in New York told me that my skin condition was due to using strong detergents or taking very hot showers. Rather than send me for a second opinion, she kept prescribing cortisone creams that made no difference at all.
One day, I jumped into the swimming pool at my home in Florida to cool off. Later on, when I undressed to shower, I was surprised to see that the skin across my backside looked red hot, as if someone had taken an iron and pressed it against my skin.
At first I thought about waiting until my husband and I went back to New York to see my dermatologist, but I decided that perhaps I would just see any old doctor in the neighborhood because it was more convenient.
I chose a dermatologist from the yellow pages. His advertisement made me laugh. It said, “I cure hard-to-cure rashes.” Whew! One phone call, and I was in his office two days later. However, that’s when the laughter stopped. Dr. Buchbinder checked my rash and proceeded to do several biopsies. The burning and itching that followed the biopsies lasted for several days, and the area was quite sore.
Several days later, Dr. Buchbinder called me and said that the biopsies revealed a diagnosis of cutaneous T-cell lymphoma (CTCL). Of course, hearing the word lymphoma made me think of everything under the sun, so to speak. I went back to his office, thanked him, and then carefully folded the lab reports into a compartment of my handbag for later use.
The minute I returned home, I immediately picked up the phone and started making long distance calls to my primary care physician in Manhattan. After leaving Florida for New York, I visited my internist, and he then sent me to a hematologist/oncologist to double-check the biopsies and blood work. My poor internist explained that he never had a patient with CTCL and, so, he apologized for letting me slip through the cracks. I was not at all annoyed. He was sincere and truthful.
After visiting my internist’s office, I made contact with Memorial Sloan Kettering, getting in touch with the department familiar with treating CTCL. There I was prescribed nitrogen mustard, which caused an allergic reaction that resulted in severe itching on one area of my skin. The itch almost drove me batty.
As luck would have it, I noticed that Dr. David Ramsay, a top CTCL specialist, was listed as a scientific advisor on one of Memorial Sloan Kettering’s brochures.* I was thrilled to see that his office was in the same building where I had my prescription for nitrogen mustard filled.
Dr. Ramsay became my saving grace from the moment I met him. He decided upon a course of treatment for me that began with narrow band (light box) treatments three times per week. A few months later, I am happy to report that I went into remission, and this is my present condition.
Dr. Ramsay, whom I visit a couple of times per year, says that I will have maintenance treatments for the rest of my life, but that I will die with CTCL and not from it! We have many interesting conversations during each visit, and my trust in him is so great that I never question his advice.
In many ways, I feel blessed to have responded to my treatment without major problems. I feel much empathy for fellow patients who have such troublesome issues with this complex form of cancer.
Throughout my journey with CTCL, it has been a comfort to me to have the Cutaneous Lymphoma Foundation as a resource. The Foundation is a place that I have often turned to for information and support, and I believe that one of its most valuable offerings is the CTCL-MF Online Support Group (listerv). The listserv allows us to express our concerns with others who are in a position to understand. As a positive thinker, I think that perhaps one positive aspect that comes with having CTCL has been finding so many people who are caring individuals such as those who participate on the listserv. If you are a patient or a caregiver, I definitely encourage you to join the listserv.
A wise man once said, “We read to remind us that we are not alone.” I hope that reading my story has helped to make you feel that you are not alone in your journey with CTCL. We are all traveling down this path together.
*Dr. Ramsay is now at the New York University School of Medicine.
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