Don't walk the journey by yourself

In this podcast 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.

Lymphoma Voices is a series of podcasts for people living with lymphoma, and their family and friends. In each podcast, we are in conversation with an expert in their field, or someone who has been personally affected by lymphoma, who shares their thoughts and experiences.

Lymphoma Action is the only charity in the UK dedicated to supporting people affected by lymphoma. We are here to make sure that everyone affected by the condition receives the best possible information, support, treatment and care. Our services include a Freephone helpline, support group network, Buddy Service, medical information, conferences for those affected by lymphoma, and education and training for healthcare professionals. We would like to thank all of our incredible supporters whose generous donations enable us to offer all our essential support services free of charge. As an organisation we do not receive any government or NHS funding and so every penny received is truly valued. From everyone at Lymphoma Action and on behalf of those affected by lymphoma, thank you. For further information visit: www.lymphoma-action.org.uk