This is not a medical textbook, and it is not a story with the ending already written. It is one person's experience of living with a rare lymphoma, going through treatment, and trying to keep the rest of life moving at the same time.

Mycosis Fungoides

Despite the name, mycosis fungoides has nothing to do with a fungal infection. It is a form of cutaneous T-cell lymphoma, usually shortened to CTCL.

The disease involves abnormal T cells, a type of white blood cell, and often first shows itself through changes in the skin. Those changes can include patches, plaques, scaling, redness, tumors, or wounds.

One of the difficult things about mycosis fungoides is that it can look remarkably ordinary in its early stages. Eczema and psoriasis are common comparisons, and that was certainly true in my case. For many years, there was nothing about my skin that suggested lymphoma.

I eventually learned that a cancer can be present for a very long time before anyone realizes what they are looking at.

Start with how my diagnosis happened →

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Sézary Syndrome

If you start reading about mycosis fungoides, you will probably encounter another name fairly quickly: Sézary syndrome.

They are related forms of cutaneous T-cell lymphoma, but they are not the same presentation of the disease. Sézary syndrome generally involves malignant T cells circulating in the blood along with more widespread involvement of the skin.

I have mycosis fungoides, not Sézary syndrome. I include it here because the two conditions are often discussed together, particularly when it comes to treatment. Several therapies used for mycosis fungoides are also used for Sézary syndrome, including the treatment I am about to begin.

Methotrexate

Before mogamulizumab, much of my treatment centered on methotrexate along with other medications intended to control inflammation and the skin problems caused by the disease.

Methotrexate is used in many different ways. It can be used for cancer, autoimmune diseases, and other conditions, with very different doses depending on the reason it is being prescribed.

My own experience with it was difficult. I dealt with severe nausea, exhaustion, problems eating, loss of physical strength, and long stretches where simply feeling normal became difficult.

That experience is one of the reasons I wanted to write this site. A medication information sheet can tell you that nausea and fatigue are possible. It cannot really explain what those words mean when they become part of your life for months at a time.

Read about my treatment history →

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There Is No Single Treatment Path

One of the things I have learned about mycosis fungoides is that two people with the same diagnosis can have very different treatment histories.

Treatment depends on how the disease is behaving, how much of the skin is involved, whether other parts of the body are affected, which treatments have already been tried, and how the individual patient responds.

Treatment can include creams, light therapy, radiation, methotrexate, retinoids, targeted medications, immunotherapy, and other systemic treatments.

This site is not about telling anyone which treatment they should choose. I am documenting the treatments chosen for me, why they were chosen, what I was told to expect, and what actually happens once I receive them.

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Cancer Is More Than Treatment

The medical side is only part of what I want to write about.

Cancer changes ordinary life in ways that do not appear on blood tests or pathology reports. Eating can become difficult. Exhaustion can shrink your world. Friendships can become harder to maintain. Being a parent becomes more complicated. Simple things like getting groceries, taking a shower, or walking across a parking lot can suddenly require planning.

Those parts of the experience matter to me just as much as the medications and oncology appointments.

Some entries will be serious. Some will simply be about what happened that day. Some will go back and fill in parts of the story that happened years before I ever knew I had cancer.