My ongoing Mycosis Fungoides treatment

Hi  and welcome to the Online Community, although I am sorry to see you finding us.

So I am Mike Thehighlander and I was diagnosed with Mycosis Fungoides in 1999......... it is a very long story and you can see it if you hit my forum name.

You will see that my diagnosis was changed from MF to Cutaneous T Cell Lymphoma (Skin Lymphoma) (CTCL) but this is the diffrent view pints between a Dermatologists and a Haematologist.

MF is a rare type of blood cancer that comes under the T-Cell Lymphoma group of Lymphomas.

We actually have a dedicated and very supportive T-cell lymphomas group.

Just follow the link I have created then hit the ‘Join This Group’ tab just under the main group name, then go to the 'Start a Discussion' tab and set up your very own Discussion and introduce yourself to the group and ask your questions.

I will keep an eye open for you over in the T-Cell Group.

Hi Mike  thank you for the quick response.

Its getting late now for me but I will follow your link tomorrow.

Kindest regards

Datacoms

Hello Datacomms

i was diagnosed in 1992. Creams did little. The only thing that worked for me was PUVA. I have had 180 treatments and 240 cumulative joules. The limit is 200 treatments and about 1500 joules..I am well below the cumulative dose but near the treatments limit. They are reluctant to give me more as I have had TSEB. 
My treatments with PUVA were very successful. Keep a running log of the number and joules given. I found that low doses and 6/10 weeks worth worked for me to give skin clearance. Initially it was 2 years before successive treatments but this shortened to 18 months and eventually 12 months.