Hi all, (apologies - long post)
I have a 25 yr old son with a recent MF diagnosis.
he has had severe atopic eczema(80-90% surface) all his life ( since birth) and has been prescribed with betnovate, various steroids etc. Bad flare ups caused him to be hospitalised - usually in quarantine because of open sores.
He took part in a drugs trial from america which did help with the overall appearance of his skin but did nothing to alleviate the pain, burning, itching that he had always had.
Thanks to the dermatologists in southampton exhausting all options- he was referred to guys in December 2022.
We have since had a diagnosis of stage 3 MF he was instantly put on beroxotene and folic acid, cholectrol tablets. with fortnightly blood tests
The burning and redness did reduce, however, my son complained of nausea, fatigue, and vision problems ( he now wears glasses)
At the last appointment they found inflamation in the lymph nodes underarm and in the groin- we are back to guys on monday and again 4th august for more biopsies, scans etc
My point to all this is :
What should we be asking at his next appointment? ( he also has ADD and doesnt ask or take in information, hence why i also attend)
He doesnt want to talk about this to anyone - im worried about his mental health, how do i support him and encourage him to talk?
or do I appreciate it's his diagnosis not mine and leave well alone?
(he has suffered with his state of mind for years - with the skin issues adding to this quite severely -
any ideas/suggestions hugely appreciated.
thank you
Hi again LibraryLil and well done navigating across to this corner of the Community.
As I said in my first post to you in the New to Community I was diagnosed with my Mycosis Fungodes (MF) back in 1999 when I was 43..... I turned 67 last November.
MF is very rare (7 in a million) type of Skin (cutaneous) T-cell lymphoma......... MF is officially a slow growing, incurable but treatable type of Low-grade non-Hodgkin lymphoma
It's so good that your son is being seen by Guy’s and St Thomas’
Professor Sean Whittaker and his team at Guy’s and St Thomas’ are the UK's top MF specialists.
Although I did not see the Guy's team in person...... (I am way up in Inverness) Professor Whittaker was very involved in setting out my treatment plan once my MF became more aggressive.
I would be confident that at the next appointment all that needs to be asked is " ....... what is the best plan of action that will control his MF and that will improve his well being"......... the team will be thinking steps ahead of where your son is at the moment and they will propose what they think is the best treatment route for him at this point in time.
I was on Bexarotene, folic acid, cholesterol tablets and thyroxine for a numbers of years and on the whole it worked ok but eventually the MF became aggressive.......
My story is rather complicated (See my story) as I had to go onto other treatments but I am now 7 years 9 months out from my last treatment and turned 67 last Nov and doing great.
Happy to chat more and answer questions as best as I can ((hugs))
