I get very confused.

when we did our first lockdown earlier in the year I was reading those with cancers and impaired immunity etc should be sheilding - yet my dermatologist told me I didnt have to and I have never reeived any letters telling me to sheild etc 

Have others with MF stage 1A or 1B been told to sheild or received letters?

I now have 2 plaques which area spreading on my right arm.  I had radio on on other plaque last June and it went after 2 sessions whcih was amazing. 

My current 2 plaques are now skinless and weep and keepign them covered is so hard as the tegaderm dressing adhesive seems to be irritating my skin creating further issues.  One patch is on my elbow so always moving.  The skin under my patches also feels bruised.  Im so done with my right arm - every moment of every day it huts/itches/irratates/aches and its really getting in the way of my day to day life.  Constantly consumes my thoughts.    

I have an oncology appt (hopefully with my oncologist not my dermatologist as they want to biopsy every new patch and its jsut a pain and waste of time as I know and they know what it is and stitches dont hold in my skinless patches - sorry bit ranty) next monday so hoping for more radio on them.

Im also nervous as the ward im heading into nearby was swamped with covid cases a few weeks ago and last time they didnt let me in initially as my temp was up a bit (was a heatwave day on 2nd radio day and now scared of any temp readings to get into appts as my body temp is and always has been slightly higer than average)

Sorry for disjointed post my head is everywhere.  

Hi SDN76,

Sorry to hear you sounding so down. I'm stage 1B and my GP put me on the shielding list, so I keep getting letters and texts from the NHS.  However the professor I see in London, said that this was because GPs were told to include anybody with any type of Lymphoma.  He went on to say that in the case of MF it was totally unnecessary for the reasons that Mori has talked about in her response to Jay earlier today. In my case he pointed out that the biggest risk to me was my age - I'm 70.  At the time I spoke to him we were coming up to the Flu vaccine time and he told me to make sure I got one.  Good luck with the Oncologist appointment.

Andy

Hiya.

Sorry to hear your news, and I hope you are getting the proper treatment and support.

My Mum is being tested at the moment for Mycosis Fungoides after years of been fobbed off with eczma and psoriosis treatments.  I had to push for her to see a dermatologist and now we're just waiting for the results of the biopsy.

Do you have any tips on how you relieve the itching? Also, my Mum has it on her face and is very self-concious, any tips or tricks would be welcome.

I've just spotted that you posted this in 2015, so things may have moved on quite a bit for you.

I hope you are safe and well, looking after yourself and still in stage 1A.

Kind Wishes

S

Please note that steroid creams should NEVER BE USED ON THE FACE.  NEVER.  

It's generally OK to use steroid creams in other skin areas.

Steroid creams usually require a doctor's prescription. 

Cheers - Mori

Hi

I'm very new to this forum and I'm waiting for a diagnosis for itchy patches on my lower abdomen and having bloods on Monday. I've had this rash for over a year, it started as a dry itchy red rash localised to one side ofmy lower abdomen, and gradually progressed to a darker rash that also appeared quite symmetrically on the other side of my abdomen, both are just above my hips I believe on top of my abdominal glands?? They now cause occasional itchy flare ups but over the time I've had the rash it hasn't responded to fungal treatments or steroid treatments. It doesn't look like much of a rash more a pigmentation on my skin now but feel it's more than it looks now as two painless glands on the side of my neck have enlarged, with no signs of infection. 

I'm worried I may have skin lymphoma, possibly mycosis fungoides, as some of the pictures I have seen of this rash are identical to mine, kind of non- descriptive brown patches that intensely itch sometimes and go a little bit red ish. 

The lymph nodes that has enlarged are my cervical ones I believe and I have read they can be directed linked to abdominal problems, such as spotting and irregular periods that begin last christmas. I'm worried I may mycosis fungoides that has progressed to later stages.

Does anyone think I may be right? Or have any advice or similar experiences?

Thank you xx

Hi Tigerbilly,

Who knows? Is probably the best answer.  This illness is very difficult to diagnose and very very rare.  To get a diagnosis they will need to take skin biopsies as well as blood tests.  In the UK most GPs will not have come across it and it won't be top of the list for dermatologists to consider.  I had it for 4 years before confirmed diagnosis.  The specialist I see at a London Hospital always checks my lymph nodes in my groin and armpits - never my neck.  My groin nodes are always slightly enlarged to about 1cm.  I'm told that it is only regarded as significant if they reach about 2cm.  With 1cm nodes, I'm still regarded as being stage 1b.  

If you do get diagnosed with MF remember that for the majority of us with it (over80%) the disease is fairly indolent and not life threatening.  

Hope this helps, but remember that none of us on here are doctors. You need to share your thoughts with a specialist dermatologist.  

All the best,

Andy

Hi Tigerbilly1

Andy's pretty much summed it up nicely. 

Generally, the incidence of Cutaneous T-Cell Lymphoma - Mycosis Fungiodes) is around 1 person per 200,000 people, per year (this does vary, depending upon where you live, hinting that environmental factors may be at work).  

If a GP has 2,000 patients, they might have one CTCL patient every 170 years.  My CTCL was diagnosed by a dermatologist, who have a greater familiarity with the disease.  Mind you, even he wasn't sure, and relied upon microscopic analysis by a dermo-pathologist, who just happened to apply the right staining to the punch biopsy.

Formal diagnosis and staging was done at a teaching hospital, after a bone marrow biopsy, bloods, and examination by two haemo-oncologists.  Nowadays DNA testing, via a salvia sample, can also be used.  But in a lot of cases, diagnosis can be ambigious, and take years!

And if you are diagnosed, it's likely that'll you'll respond to UV therapy.

Cheers - Mori  

Mori with steroid creams it depends on the country you live in.here in England weaker Hydrocortisone cream is over the counter but the stronger stuff like Dermovate and Betnavate are prescription only.now when I was in Oman 3 years ago I ran out of Dermovate and couldn't even buy Hydrocortisone without a prescription which obviously I didn't have.I was in Jordan about 2 years back and managed to buy Betnavate over the counter.mind all rather academic as I don't think any of them actually work on stage 2b Mycosis Fungoides nor does UVA/B.I'm on Bexarotene trade name Tagretin and guess what that doesn't work either.the only thing that has worked is gamma ray radiation but the plaques are spreading quicker than they an irradiate so I think that they will try chemotherapy soon.Advanced Mycosis Fungoides is very bad news and I don't think that it's indolent as you can see it getting worse every day but on the plus side it doesn't seem to have infiltrated my internal organs but I have a bad feeling about it at it's rate of progress.

Hi Canopus7

This is a test reply to see if CancerChat have fixed the IT problem.

Cheers - Mori