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Published on: 8 January 2024Mike and Kasia share their experience of skin lymphoma.
In our latest podcast, entitled Don't walk the journey by yourself, Mike and Kasia talk about their diagnosis of cutaneous (skin) lymphoma. Mike has had skin lymphoma since 1999 and Kasia was diagnosed in 2023. Both Mike and Kasia are living with mycosis fungoides (MF), which is the most common type of skin lymphoma.
Five years seems to be a bit of a theme, as Mike was living with MF for five years before he found out he had a skin lymphoma. Kasia started struggling with severe itching when she was pregnant and it was hoped the itching would go away once the baby arrived. However, it ended up taking five years until a diagnosis was finally reached.
Over the years, Mike has had treatment with topical creams, ultraviolet light therapies UVB and PUVA and retinoid (oral) drugs including Baxarotene. However, the symptoms kept reappearing, so Mike went on to have treatment with allogeneic stem cell transplantation (using a donor). This has resulted in him being symptom-free since 2015.
Kasia is currently using topical steroids as well as methotrexate (an immunosuppressant), but acknowledges that she is at an early stage with her skin lymphoma. She explains how something as simple as having a shower causes her excruciatingly pain.
Both Mike and Kasia talk about the challenges of living with a skin lymphoma, including the effect it has on family and work and the difficulties of living with a rare condition that very few people have even heard of.