Hello all,
Last august I was diagnosed with mycosis fungoides/ t cell lymphoma. I’ve had it for about 15 years but it was misdiagnosed as eczema. I’ve had a second consultation and both agree on the diagnosis.
I’m doing well, life is good and my health is good despite the diagnosis. Despite having it for 15 plus years it’s still classed as early(1a) or perhaps even a stage before that as was explained to me by the most recent consultant. If anyone has experience or advice I’d happily take it as I will be actively trying to keep this in check and not allow it to progress if It can done.
Advice on creams/ointments and things to avoid.
Presently I’m on a wait and see approach, skin is patchy on my arms and legs mainly. Which is unusual for mf, but there you go.
Hope you all are keeping well and thank you for your time
Hi @Aaronb and a great big welcome to our forum.
Well that’s a long diagnosis period and really shows how, with generic test results, that it is easy to misdiagnose.
In a funny way I suppose I was diagnosed with Chronic lymphocytic leukaemia (CLL) 20 yrs ago. I was diagnosed by a gynaecologist when treating me for a gynae problem
I have been on watch and see, watch and wait, active monitoring, whatever you want to call it ever since. Other people are started on treatment straight away. I count myself a very lucky girl.
I am not a medical person but I do not believe there is that much you can do to stop any of our conditions progressing, if that is what they decide to do.
My very personal thoughts are:-
Be wary about skin cancers, wear high factor sun screens, hats and cover up.
Do not use extra lotions and potions or take any supplements etc without checking it out with a medical person who knows about your conditions.
I personally believe in a normal balanced diet, with the odd treat.
I also believe in fresh air and reasonable exercise, I am a walker and Pilates girl.
My best tip is if you have been living with your diagnosis for 15 yrs without realising it then go out and continue living your life as you were.
However my diagnosis did give me the opportunity to reassess my life and what I wanted to do and with whom.
Please do keep posting as I look forward to hearing more about you.
Live the life you love and love the life you live.
Thank you for sharing.
It’s a strange one as sun is good, especially uvb . My wife is a food scientist so thankfully she can help me with any technical diet queries. Problem is that it’s 3-5 people per million frequency, so it’s not very well understood( at least that’s why I understand).
Thankfully it’s mild and I do hope it stays that way as it might. However mild it is I’m going to do what I can.
A small world!I too have Mycosis Fungoides but at a far more serious stage than 1a as mine in 2b .Stage 2 is strangely split between the indolent disease and the aggressive disorder,with 2a being indolent and 2b being aggressive.Mine started as a misdiagnosis of Eczema and got progressively worse so they did the 30 substance patch test and decided it was actually Psoriasis .Then some tumours came leading to an amputation and finally the true cause came out.Mycosis Fungoides is very tough ,or has been in my case,and resists every thing except radiation.I have had topical steroids,PUVA,Total Electron Beam,Immunotherapy and Chemotherapy and nothing works.To that end I now will have to have a Stem Cell Transplant as most likely it’ll end up amputating my life!I agree it’s very rare but my sister knew a man in the USA who had stage 4a Mycosis Fungoides but he sadly died of it about a year ago.My mother likewise had a friend who had PCTL NOS a related disease so they might be more common than you think.I would imagine at the early stages a lot of people who have it think that they have Eczema or Psoriasis ?There’s a whole bunch of these T Cell Lymphomas and the actor Sam Neil of Jurassic Park fame was recently diagnosed with one called AITL.
Hi Aaron & Kevin
I have just signed into this site and wanted to introduce myself. I too have Mycosis Fungoides - diagnosed in 2018 and had PUVA, Total Skin Electron Beam treatment, followed by three years ‘wait & watch’, recently had some small tumours and after a blood tests - large cell transformation - now stage 2b so trying out Interferon injections - 2 months in. Going ok so far but feeling a bit fatigued on occasions and still hoping for some positive results which I’m told maybe be in the next month.
Please let me know how you are getting along, there aren’t that many of us so good to hear from people who experience the same dilemmas, good or bad.
Cheers
Jayne
Hi @Jayne1 so glad that you have joined our forum and posted to introduce yourself you and tell us a bit about your diagnosis.
Yes, by sharing your information I am sure you will be helping others.
I really look forward to hearing more about you and as you say we often share the same dilemmas.
Really look after yourself.
Hi @Jayne1 welcome to the forum and great to read your post about yourself.
It’s so nice to meet new forum users and hearing about all them, as @Erica says by sharing your information you will be helping so many others.
I really look forward to hearing more about you as you say we often share the same thoughts and experiences and it can help so many knowing they are not alone.
Yes 2B is when tumours come.Mine unfortunately weren’t small and one even went into the bone of my finger.They are quite dangerous as at a certain point the tumour can collapse and it becomes infected.Paul Eddington of the Good Life and Yes Minister fame died from Mycosis Fungoides but people with it are few and far between thus not much is really know about it or the other T Cell Lymphomas.I am having a Stem Cell Transplant in July and as I understand it that is the only way to possibly cure Mycosis Fungoides or any other T Cell Lymphoma except for certain kind of Large Cell Anaplastic T Cell Lymphoma which can be cured via other methods but only if it’s of a certain subtype…ALK Negative I think?
I remember reading about Paul Eddington.
I send my very best wishes on your stem cell implant operation and that it is successful. The small tumours that I have do seem to act the way you describe and become infected which is a worry. For the first one I had antibiotics which seem contradictory to having interferon to boost my immune response. The latest ones I am managing with iodine patches and dressings and seem to be working and healing slowly. This heat and sun doesn’t seem to help so I am trying to keep cool.
Let me know if you are able, how you get on. I have always assumed that I would be too old to be considered for a stem cell implant at age 64 if I ran out of treatment options as I know that the operations are very expensive. Not sure though.
Take care
I think that 64 would be ok for a Stem Cell Transplant but I if you have other unrelated conditions like Diabetes,heart problems,etc it will complicate it.It is sort of a last resort if nothing else works which in my case it didn’t!I have been on Topical Steroids,P-UVA,Bexoratine, Interferon Alpha, Methotrexate, Radiation and Brentuximab and only Radiation produces noticeable results but the benefits aren’t permanent and the Mycosis Fungoides will return after around 6 months although sometimes a lot quicker like 2 months! With the tumours generally a black mark will appear on them after a month or so and they start to collapse becoming septic.I don’t think heat makes any difference to the process as it has happened in exactly the same way in Winter or Summer.
Hi @Kevan7 please do keep posting how you are doing when you have your stem cell transplant in July.
I will be thinking about you.
Be kind to yourself