Hi Lauraborg

Your dad's condition sounds just awful.  It must be really difficult for him, and family members.

Have the doctors done everything they can do?

Mori

Hello, its an old thread but wondered if folks still about here?

I was diagnosed with MF1A in 2007 and still itching!  

Im 43 now and had 2 children since my diagnosis.  

I still live almost in denial - still eat bad food, vape and not much excercise.  I should really eat healthier although my specialist dermatologist said sugar content doesnt affect my patches, just overall health.

I had some UVB treatment in early years which helped but now only on steroid ointment, which is messy as heck and occassionally sudocreme for when my patches wont heal and weap (mostly due to itching unconciously) 

Id love to hear of others with MF low grades to see how everyone is getting on.

Sarah.

Hello Sarah

I was diagnosed CTCL MF IA in September 2009, and my 10th anniversary is in a fortnight.  I'm still stage IA, which is typical for many of us.

It seems that about 85% of patients with MF don't really progress to higher stages.

But my heart goes out to those poor souls who do have disease progression - it can morph into a nasty beast. 

I work near a dermatologist with a light chamber, and get UVB as soon as I notice a patch - which tends to be every two years, typically in winter.  I don't have to even see the dermatologist anymore - I just book the chamber.

I'm lucky that my patches generally don't itch, and they respond really quickly to UVB.

Here's to vaping!  I haven't had a ciggie in two years.

I hope you stay reasonably well.

Regards - Mori :-)

Hi Sarah,

I was diagnosed with CTCL MF 1A in November 2018. Although my diagnosis was only recently I have had some itchy patches on my hip area since around 2007. I remember going to the doctor and him telling me it is just a temporary thing and it will go away with a steroid ointment. (I just turned 40 in July to give you a sense of my age)

Since my biopsy and confirmed diagnosis I started light therapy in Jan 2019 for the first time with UVA light (2 times per week). I am required to rub in a UV activation cream on a each and every patch and wrap myself up in cling wrap 1 hour prior to the therapy. Once entering the light chamber (stand up) I am in there for approx. 40 - 50 seconds. I must say during the light therapy the patches did not itch and remain annoyance free.

The light therapy has ended now (after 3 months) but the patches are still there quite visible and occasionally they itch. I can tell they have reduced in intensity (not size) as mine used to weap as you describe.I too am perscribed a steroid ointment for a 2 week on 2 week off cycle but it can be very annoying applying the ointment once per day.

I am going for a 6 month followup with the dermatologist in 3 weeks and just waiting to see what he says.

All the best to you,

Regards,

George

Hi Sarah,

I was told by my GP my itching has to do with my age and has nothing to do with CTCL.

The dry patches are white and small and only a few have materailsied over the years. I am now 41 years old. I was diagnosed 6 years ago. 

My dermatologist said i can take upto 6 allergy tablets a day and also to use dermol creams for the itching.

I have few patches but nothing significant so i don't want to complain about it. I have a appointment every 6 months for checkups. My patches are just small white and have not manifested into anything.

Some times on my hand i get patches that almost look skin peeling away. Comes and goes, but can be quite visible. I feel like i shouldnt complain as its just dry skin i guess.

Best regards

Lata Devi

Hi there, 

i have recently only come across this condition and it is frightening me a bit. In summer 2017 I discovered. Circle on my inner arm near my elbow which was entirely dry. I didn’t think anything of it until more and more of these circles which are dry popped up on both arms. I went to a doctor last year who said it was mild eczema and no problem so I moisturized and left it. I then went to another doctor this year and I was told it was fungal and put on treatment but it didn’t help. These patches have now pretty much morphed into one with one or two singular and one or two on my shoulder which come and go. I have hypopigmentation around one also on my arm. Does this sound similar to anyone else on how they found out? Hoping to get to a dermatologist consultant this month. 

Hi,

I had mark on my hand near my thumb. I went to the GP to be told it was dry skin too. After several attempts the pigmentation on my hand started to change and it became a rough raised pigmentation. Only then was i told by a different Dr that i should be refered.

I had a biopsy done, Where by they can rule out what cells maybe appearing.

I was then told my diagnosis. For some reason it didnt really hit home. My family really dont mention the word Skin Cancer, but refer to as that disease or the Skin issue. So its hard to talk to anyone. 

I have never had any issues or allergies. So maybe my itching and small pigmentation is due to age, as my doctor keeps saying. I have difficult somtimes sleeping as i feel the itching is like burning.

I have pigmentation that also comes and goes, but my GP only had me seen once they start to change appearance. 

It maybe wise to see your Doctor again and talk about your concerns. It took me several attempts over a year. But it is also difficult for the GP as it can mimic eczema/vitiligo. As they are not specialists, all they can do is give you creams.

I do feel for others where it has gone beyond the 1st stages. 

Hi Mori

I have recently been diagnosed with mycosis fungoides and have an appointment next week with my dermatologist. Now I do not know what stage I am but looking at my body I have patches and plaques on my arms, my torso, abdomen, buttocks and both legs. No nodules (tumour). 

After been told over the phone that my preliminary result of the biopsy is that of mycosis fungoides I have been worried and scared of what will happen now. 

I will be very much great full if you can answer my following few questions just to ease my pain...

1. is It true that this disease is not life threatening?

2. Can I live a normal life?

3. How long does it take for it to go from patches and plaques to tumour stage?

4. There is no cure but is this disease treatable?

As you have a greater knowledge of this disease then me I would appreciate your response.

Kind Regards

Jay

Hi Andy

Thank you for your reply, it has helped me to calm down a little. I got the news from my consultant today by phone and ever since I’ve been worried. I’ve been searching on the net trying to find as much information I can of this disease. 

What I have learnt is that the disease gets aggressive during the tumour stage. At the moment I have only patches and plaques but all day I’ve been thinking what if tomorrow I have signs of tumour on my body. Can that happen or does it take a longer period to get to that stage?

Your words have put me at ease a little Andy and I appreciate that but I still can’t help but think of the worst!

Andy do I have to request to be referred to centre of excellence?

kind Regards 

jay