Hi everyone,

I am new to this forum and started a separate discussion but not sure if anyone will ever see it so trying my luck here :)

I have been diagnosed with MF almost a year ago now but had been having a rash in my back for a few additional years.

Over the course of this year I've developped new patches under my armpits and my upper thighs and I was wondering what the average progression rate was, and if some of you could share their experience living with MF and how it progressed - to get a better idea of what the doctors mean by "indolent".

I was diagnosed at stage 1A and I understand that it's not a fulgurant cancer but I am 25 and it progressed quite rapidly this year vs the first 5 years I had the disease, so I am not sure what to expect in the many years to come. 

Many thanks for those of you who take the time to share their experience - it is truly helpful!

Edit post

Hi Lea.dsh 

Welcome to the MF family. I was diagnosed with MF 2 years ago  at stage 1b and I've had the disease about 10 years now (was diagnosed with eczema and Psoriasis in the beginning) I have been going through UVB treatment (just finished the course last week) and all the patches on my body have gone. 

over the years I've had new patches appear so it is not unusual for you to see new lesions on your body. What current treatment are you through? Have you had regular blood test? Have you spoken to a doctor who specialises in CTCL? Have you had an appointment or received a appointment to see doctor who specialises in CTCL? sorry for the 20 questions just want to know where you are with you treatment.

kind regards 

jay

Thanks so much for answering this fast!

I am followed by an expert dermatologist in London - treatment for now is topical steroids - it's really effective on the itching but I've been told to apply it only occasionally and to favour moisturizing creams when possible so I try to do so but I now my skin gets quite bad when I spend a week without applying topical steroids

I don't get regular blood tests just skin and lymph nodes check ups every 6 months 
 

Would you say from your experience that the surface of the patches usually double/spread to several different areas within a year or was that more progressive in your case? 
 

many thanks again,

Lea

Hi Lea

so at stage 1a the treatment is normally steroids cream and moisturing creams. If overtime you have more patches then you'll probably have to have NARROW BAND UVB TREATMENT (light therapy). UVB is brilliant!! It eradicates most if not all patches on your body and you'll be patch free for couple of years or if your lucky you could go into remission.

You probably going to the same centre of excellence hospital that I go to. I used to go there every 6 months but now they have told me to go once a year because the treatment (UVB) has worked brilliantly. 

For good 6 to 7 years I had only few patches. I had 1 on my leg and 1 on my right hip and couple on my rear end. It's only in 2018 that I realised more patches appearing all over my body and it's only then did my doctor refer me to a dermatologist. So yeh you will find more patches appearing over time. Do not worry Lea this disease is not life threatening to the majority of us. What I've been told from Andy (who is also on here) is that most of us will have a normal life expectancy. What they say is you will die with it not from it. 
 

85% of people who are diagnosed with this cancer live to a normal life expectancy. 
 

Hope I've been helpful.

jay

Many thanks for helping Lea, Jay.

Jay - you are providing exactly what I hoped - sensible advice to patients diagonsed with CTCL/MF.

My very best regards - Mori 

Thanks Mori, i'm only passing on what I have learnt from you and Andy, how you guys gave me advice when i first got diagnosed with MF

jay 

Hi Lea,

Welcome to the site and MF club!  Jay has pretty much said it all.  Indolent for most of us means very very slowly.  I've had MF for probably 10 years but only diagnosed about 5 years ago.  My symptoms sound very much like yours.  Is it worse now than 10 years ago? Yes.  Is it worse this year than last year?  Hard to judge.  

Just a couple of tips.  Slap the moisturisers on as much as you can.  I cover myself in them daily and sometimes when the rash/itching is bad I do it twice a day.  When I use steroid ointment (Dermovate or Mometasone) , I apply it thinly for several days on the trot to get the rash to subside and then work off of it gradually.  Don't just stop suddenly.  So cut down to every other day for a few days then every third day for a few days.  This was a tip the cancer specialist nurse gave me, apparently its not good to suddenly stop any kind of steroid - the problem just bounces straight back.  Sometimes when I get what I call a bad period, I seem to chase the rash round my body.  So you deal with an outbreak on your chest and it then appears on your back and after that on your legs and then its back on your chest.  When it gets like this i ask for a series of UVB treatment.  

I may see you at the specialist centre in London.  I met a guy there a couple of years ago who had been stage 1b for 25 years.  Also on that occasion a young woman who had been chatting to us in the waiting area came out from seeing the Prof. and it seemed likely that she had gone into some sort of spontaneous remission.  Apparently this is very rare but can happen - dont get your hopes up about this, it is very rare.

All the best,

Andy

Hi,

Came across your post. I have MF and mine is stage 1B. Would be good to have a chat. I have devloped Lymphodema after treatment. Anyone else experienced this?

I am part of a study at my local hospital and have had this condition for 20 years.   

Mary

Hi Mori

If you and [@Scooby1916]‍ want to chat about all things MF-related without worrying about what you're information you're sharing, don't forget that there is the option to private message each other. You can read more about how to do that here. 

And don't worry about annoying us ... it's part of our job :wink:

Best wishes, 
Jenn
Cancer Chat moderator