Hello i am 56 years old and was diagnosed with CTCL ( Mycosis fungoides ) on the 16th of october 2019. About two years before this i developed a type of large spot/boil type mark on my waist line that was very sore and as it was around the area of my trouser belt it soon got worse that the actual head came of it. I went to my gp who then ordered full blood test and the nurse removed the scab as it was open,both the biopsy and bloods were normal.
I then started to break out in more of these and more blood tests came back clear so i was referred to the dermatoligist.
It was a full year before i was seen and at this stage i had a number of large type boils i called them, later to find out they were actual tumors. At this appointment the dermatoligist they removed two tumors from my arm for a biopsy.
About three weeks later i went back to the hospital and was informed i had this type of lymphona, mycosis fungoides. I was shocked, confused then angry i had to wait a full year to see a consultant.
Over the next few weeks i got a petct scan and a bone marrow biopsy which both returned clear that this did not spread to any other internal organs.
I have now had a number of appointments with the Haematologist and dermatologist and will be starting radiotherapy this comming week. The largest tumor will be getting the radiotherapy first to reduce it in size before moving on to full body radiotherapy treatment.
My journey along this path has probably started along time ago maybe about 25 years or so , when my skin started to become very dry and with bruise type marks on the lower part of both legs and over the years slowly spreading up the body. At the start of this i was advised by doctors to use Diprobase type creams etc, i had no other symptoms at that time and blood tests found to be clear.
I may update this profile over time as the treatment continues and hopefully get used to the fact that its never going to disappear .
Just a update
The radiotherapy to one tumor was performed and to my surprise zapped and now no more. The full body skin radiotherapy was cancelled due to the amount of various sizes of tumors 42 to be precise.
All my blood tests along with full body photos were sent to a specialist unit in London for analysis along with the very tumor slides used to diagnose me.
Then advised all specialists agreed on a treatment plan for the way ahead. Methotrexate started on February 12th with blood tests to be checked every week.
One week later I can already see an improvement on the skin, if I could only control the nausea and always feeling cold I would be happier.
When or if the methotrexate gets the most or all of the tumors under control other treatments will begin, Puva and TSEBT mentioned again.
Nearly forgot stage #3 then #2b by another doctor ( 2b or not 2b that's the question)
Thanks for taking the time to read this I wish you all well.
