Hello everyone, just to let you know my story as it started a long time ago. many others will be just starting, the same journey.
Im a 61yr male, I finally got diagnosed with MF after 4 years of tests. I was 30yrs old at the time, my treament started will all the lotions and potions. they only eased the itching and soreness for a while. my first patch appeared on my right inside leg, after 1 year it was on both legs. aftet 2 years, I had them totalling 60 percent of my body. It was getting unbearable. Hot sweats and itching where driving me mad.
They decided on Ultraviolet light therapy, 3 days a week for 3 months. this helped send it into remission, made life easier but remember its uncurable. After 3 months, i was good to go for 3 months, then back in the machine again. this continued for 15 years. When i reached 51yrs old, I decided if its ultraviolet light i need, i will move to a sunny country . England was my home but always grey and wet. The first 6 years was a blessing, lots of sun with minimal clothes on. Even managed to get a tan,
Then everything changed again, the patches came back, they where bigger and more lumpy. I had to come back to England for annual checkups. the next onr wasnt going to be good. The specialst said UV therapy is no good to me now. The MF had got to aggresive. They quickly got me setup for total body radiotherapy, 8 sessions over 3 weeks. It worked so fast i was amased. lumps and patches seemed to disappear overnight. I lost my hair everywhere and my sweatglands stopped working. Ahh well its give and take. my hair did grow back though.
This treatment put my MF back into remission for 2 years, Next week i start the treatment again. the patches i have now are smaller, but if they target them now, I might not need treatment agajn for a few years.
Mycosis Fungoides is uncurable, it will only get worse as we get older, It has never stopped me doing my work or enjoying life. odd times it has got me depressed. one time i went to local swimming baths. when people saw my patches, i could feel the disgust as i got into the water and they got out.
If you have just been diagnosed, its not the worst condition to have. keep doing what you like that keeps you happy, wear loose fitting clothes dont follow fashion. be comfortable in what you wear. my family and friends are used to me, turning up in a Onzey for dinner.
Hi Arfey and warm welcome to the Macmillan Community although sorry that you had to find us and especially sorry to hear about your MF diagnosis.
I am Mike and I help out around our Lymphoma groups.
I was diagnosed way back in 1999 at 43 with Mycosis Fungoides (a type of Cutaneous T-Cell Non Hodgkin's Lymphoma) reaching Stage 4a in late 2013 when a second type of aggressive Peripheral T-Cell Non Hodgkin's Lymphoma (a type of fast growing High-grade non-Hodgkin lymphoma) was then presenting so I most definitely appreciate the challenges of this journey rather well.
You may want to join our dedicated T-cell lymphomas support group.
This group is a safe places to talk to others with a similar diagnosis, treatment experience, to ask questions and get support.
Click on this link > T-cell lymphomas and once the group page opens you will see a [Black - Click to Join - Banner] at the bottom of the page, click in this box and this will then confirm that you have joined the group.
When you are ready……. you can introduce yourself by putting up your very own post by clicking [+ Create new post] or [+] in the top right of the group page.
You can copy and paste the text from this post into your new post.
I will keep an eye open for you but if you are not sure what type you have pleased do get back to me on this post and I will help you out further.
