The Spot on My Back
For about fifteen years, I had a reddish patch on my back that we assumed was eczema. It looked like eczema; it never itched, and it caused me no pain or discomfort. Since it did not interfere with my life in any obvious way, we ignored it. I never seriously considered that the original diagnosis might have been wrong.
I have since heard from many people with mycosis fungoides who live with terrible itching and discomfort, but that was never my experience. For most of those fifteen years, the patch was simply there. It was visible, but otherwise quiet, and there seemed to be no reason to think of it as anything more serious than an ordinary skin condition.
That changed a few years ago when the area began breaking open and developing into wounds. They were ugly and increasingly difficult to ignore, so I went back to my doctor. Even then, cancer was nowhere in my mind. My doctor looked at the area and said that perhaps it was not eczema after all. It might be psoriasis. She referred me to a dermatologist and, at the same appointment, performed a punch biopsy, removing a small sample of skin so that it could be examined.
About two weeks passed, and by then I had almost forgotten about the biopsy. Then the doctor’s office called. It was not my doctor on the phone but her nurse, who told me, with very little preparation, that I had lymphoma. It was called mycosis fungoides, she explained, and it was a rare type of lymphoma. Then the conversation was more or less over.
I was gobsmacked. It took a moment for what she had said to register and another moment to remember that lymphoma meant cancer. I had just been told over the phone that I had cancer, and I was left trying to understand what that meant.
Even then, the disease was not affecting my overall quality of life as much as the word “cancer” might suggest. The wounds looked awful, but I was not in pain and still did not have the itching that many people with this disease experience. Nevertheless, everything began moving much faster after the biopsy results came back. I was quickly referred to a dermatologist who has been overseeing my care ever since, and she has been great throughout a long and often difficult process.
Mycosis fungoides is not skin cancer in the usual sense. It is a type of cutaneous T-cell lymphoma, involving white blood cells called T cells, but it commonly shows itself in the skin. Because my disease has primarily presented there, a dermatologist with experience treating cutaneous lymphoma has been at the centre of my care.
For the past couple of years, that care has included treatment with methotrexate. It may be considered less aggressive than the chemotherapy many people picture when they hear the word, but my body did not experience it as something minor. Methotrexate made me extremely sick, and although I stopped taking it two months ago, I still have not fully recovered from what it did to me.
Unfortunately, while I have been trying to recover, the patches have continued to get worse. That has brought me to the next treatment: mogamulizumab, also known as Poteligeo. It is a targeted treatment called a monoclonal antibody, designed to recognize a protein called CCR4 found on certain T cells and help the immune system target them.
I am scheduled to receive my first mogamulizumab infusion at the hospital on September 23. I have been told the treatment will be given intravenously every other week, but I do not yet know all the practical details. I do not know whether I will eventually need a port or whether they will simply start a new IV for every infusion. Those may be ordinary questions to people who work in oncology, but they are part of the uncertainty for someone entering a new treatment for the first time.
I have learned not to become too surprised by these things. Cancer has a way of introducing new words, new procedures, and new reasons to wait just as you begin to feel that you understand what is happening. I am not a doctor, and I do not intend to use this blog to pretend that I am one. I can only describe what I have been told, what happens to me, and what it feels like to live through it.
That is what this blog will be about. I want to write honestly about mycosis fungoides, the treatments used to control it, and the effects those treatments have beyond the examination room. I also want to look back at the years that brought me here, including the long period when the cancer looked like nothing more than a harmless patch of eczema and the two difficult years of treatment that followed the diagnosis.
This will not be a medical guide, nor will I pretend that my experience represents everyone living with mycosis fungoides. It will be one person’s account of what this disease looks like from the inside, including the uncertainty, exhaustion, frustration, and occasional dark humour that come with it.
The journey began long before anyone used the word lymphoma. It began with a reddish patch on my back that did not hurt, did not itch, and did not seem important enough to worry about. Now, after fifteen years of ignoring that patch, several years of knowing what it really was, and two years of difficult treatment, I am preparing for whatever comes next.
First infusion: Wednesday, September 23, 2026
tags: Diagnosis, Daily Life