Hi, Sorry to hear about your boy but you’re right, most doctors know very little about the disease. The good news: Very few people die from Mycosis Fungoides, it’s just a question of treating it. I’m doing much better now after having UVB Light treatments for a year. The Dr told me I’ll need to continue the treatments forever although I’ll be able to reduce the frequency. I’m now going once a week after starting three times a week. I was diagnosed with the disease about 8 years ago and originally was treated with some special creams that worked well initially. Please feel free to contact me with any questions, etc.

Good luck!

Geoff

Hello Mammy B

Cutaneous T-cell lymphoma, also called Mycosis Fungoides, is classified as a rare disease.  Consequently you are finding it difficult to get really knowledgeable health professsionals.

The average public hospital or  general practitioner really can’t help much.

But there are hospitals that are called centres of excellence, who have teams who know about this rare disease.

There is a foundation in the United States that is dedicated to this disease, it’s called the Cutaneous Lymphoma Foundation.  

The address is 

https://www.clfoundation.org/

If you go to this site, and type United Kingdom into the search bar, you will be given the names of three hospitals in the UK that I think might be centres of excellence for this disease.  If I am correct, don’t waste time going to ordinary hospitals, go to where the expert specialists are.

Two years old is very young indeed for this disease.

Having said that, this disease is strange - in 85% of patients it is not lethal, it tends to be an inconvenience.

Pease let me know if this is helpful.

Regards - Mori

Thank you both for your replies. 

I'm afraid that my son appears to have a rather more advanced stage from the reading I have been doing as he also has a lesion on his tongue. From what I read there isnt usually good prognosis for this. Not to mention the fact that he is only 21 months old so I'm not sure how or if any treatment will be offered. 

Mori- thank you for the advice and the link. I visited the site but am unable to find the centres of excellence for the UK? 

Does anyone have any information on whether certain viruses are linked to MF? 

My son had hand foot and mouth virus 2 months ago. 

He already had some symptoms at this point but having HFM seems to have exacerbated them and things have deteriorated rapidly since. 

Also my son has a cutaneous mastocytoma from shortly after birth and I have wondered whether this could be somehow linked ? 

Many thanks. 

Hi,

The disease is usually very different, in a better way, in children. The other posters are absolutely right. You really need to get to an expert. There is only really one doctor in England who looks after the children with this in addition to adults. You need to get a referral to them. You can find their details easily on Google. We were initially seen by a very senior Dermatologist locally who does look after CTCL (MF) patients but adult ones. They absolutely did their best but did not know who to refer us to or really what to do with a child. They gave us a very bleak picture. I am still quite traumatised by those consultations. I would ring your hospital every day until the referral is made. We were then screened with photos and some info before we were given an appt. This was stressful but allows them to examine as a multi disciplinary team.

Have you had biopsies taken yet? I would await advice before doing so - we found the process incredibly traumatic and ultimately it wasn’t helpful for us. You do however need to make your own decision on this and if your child is more unwell and this is recommended then it may well be the right thing to do - so I will leave that to you. 

We are still uncertain that our child has it at all. My husband is convinced that he hasn’t and that it was a viral related phenomena. Life is good for us at the moment and I feel that’s always the best you can ever say really. I get nervous about predicting tomorrow. 

I really, really hope that you get good news. 

Hello MammyB

I forgot that Cancerchat's policy is that one isn't supposed to post details of any specific hospital or treatment centres, even if they are for centres of excellence.

Consequently, I simply don't know if you got to see the details of the three UK centres that the US-based Cutaneous Lymphoma Foundation had on their website.

I have sent you a friend request, so that I can send you the details of the centres in a private message (whic is allowed by Cancerchat).

Regards - Mori 

Hi , just wanted to ask a few things as I’m scared u have this at 17, what are or were your symptoms because I recently have been getting out breaks of a rash on my torso and neck but I have suffered with eczema all my life, it goes with a steroid cream I use hydro cortisone or something like that , and recently I found a swollen lymph node in my neck well it feels swollen to me and been feeling fatigued , I know your post was years ago and I hope you can reply , thanks . Connor 

Hi Connor

Glad to share any information that might help.

I am a typical case, as I was diagnosed at 50 years old, and staged a couple of years later.  I'm just about to turn 60, and my CTCL Mycosis Fungiodes has stayed at stage IA.

i am having narrow band UVB phototherapy again, and developing a rediculous sun tan.  Every couple of years I get patches on my buttocks or lower legs, usually in winter.

Firstly, it's really important that you get staged at a haematolgy department.  They need to take blood, and bone marrow, and rule out that you have the Sezary variant.  Sezary is a more agressive form, while Mycosis Fungoides tends to be indolent.  Having said that Mycosis Fungoides is indolent, about 12% of patients do have disease progression.

CTCL Mycosis Fungoides stage IA and IB can be treated with steroids ointments, and UVB.  The skin tumour stage is IIB, and tumours can be dealt with very effectively with spot radiation or interferon injections.

The swolen lymph node is concerning and you must get that checked out ASAP.

if possible, try to get a referral to one of the UK's centres of excellence because our disease is rare.

The Cutaneous Lymphoma Foundation (US) website can help you to identify UK centres of excellence (or send me a friend request and I can send you a private message).

Regards - Mori

One of the websites i found useful was   Lyphoma-action.org.uk 

Depending on which website you look at the terminology may vary 

Lyphoma action has a great deal of information of all diffrent types of Lymphoma on it 

Update on my dad, he is very poorly at the moment, his tongue has got really bad and can no longer eat and is on the fill up drinks, he can also no longer really talk as in pain all the time and it's very hard to understand which is frustrating for not only him but others, I have found this chat so helpful as it's someone to unload to thank you