Hi. I'm Mayzie. I was diagnosed with cutaneous T-cell lymphoma (CTCL) in August 2017. I am nearly 59 years old and still in complete denial of this rare disease. I am at stage 2b. I have had some tumours blasted with radiation - 1st one in March 2022 (just after my partner of 30 years passed with pancreatic cancers, diagnosed at stage 4) and the others in May 2024.
im on "wait & see" after undergoing a clinical trial at the start of 2023, which had to end because I developed a liver condition, and it was unknown whether the clinical trial contributed toward the condition.
i have been told that I may need a stem cell transfusion (I think). That has frightened the life out of me. I cannot be off work for 6-12 months as I still have a mortgage and like others, bills to pay. I am in a fixed term contract that comes to an end next year, and I don't know if it will be renewed, especially working in the private sector. So at this moment in time, I feel very, very scared.
Thats my introduction to me!
Hi Mayzie G86a32a and a warm welcome to this corner of the Community although I am sorry to see you joining us….. and I so sorry to hear about your partner.
I am Mike and I help out around our various Lymphoma groups.
For some context about me……, I was officially diagnosed way back in 1999 age 44…… although I now realise I had most likely been living with my Mycosis Fungodes for a number of years…….. yes it’s 8 in a million….. seen as incurable but treatable.
I don’t know if it’s MF you have but it is one of the various types of Skin (Cutaneous) T-Cell Lymphoma (a type of slow growing Low-grade non-Hodgkin lymphoma)
I eventually reached Stage 4a in late 2013 when a second, also rare (4 in a million) type of aggressive Peripheral T-cell lymphoma not otherwise specified (PTCL-NOS) (a type of fast growing High-grade non-Hodgkin lymphoma) was then presenting.
Due to me having to be treated for 2 rare T-Cell NHLs at the same time my main treatment journey was from late 2013 to late 2015 and was rather complicated (See my story)
I did have 2 Allograft Stem Cell Transplants (June 2013 then in Oct 2015)…….
But I am coming up to 10 years out from my last treatment, I turn 70 next month and I continue to live a great life……. this can be treated.
Happy to chat and answer questions.
