Hello Canopus7

Sorry about the delay in responding, but there's been some IT issues.  I've tried to reply three times, but it looks like it's fixed now.

I remember you mentioning that you had lost a finger from CTCL-MF, but I didn't realise you had been staged at IIB.

As you clearly know, the disease changes dramatically at stage II, and at stage IIB tumours form.  While you can generally keep on working with stage I A and B, stage II is another matter.

I was going to ask if you were being treated at one of the UK's CTCL-MF multi-disciplinary Centres of Excellence, but as you've mentioned that you've been prescribed Targretin, I think you probably are being treated at a Centre of Excellence already.  Don't mention the hospital name, as we are not allowed to do that on this forum.  I'm sorry to hear that you aren't responding to Targretin.

While I'm glad that you are responding to radiotherapy, it's amazing that the plaques are spreading faster than they can be treated by spot radiation.

I won't speculate on what the team will try next, but my thoughts are with you Canopus, because you clearly have advanced and agressive Mycosis Fungoides.  There are other treatments to try - so the game's not over yet.

Regards - Mori 

You are correct that there is an intermittent problem with the website but it seems ok,touch wood!,now.no I am not at a Centre of Excellence as I live in a smallish town in the north of England however my consultant consults with a specialist in Newcastle on the matter.the chap I see does however seem very knowledgeable about Mycosis Fungoides,Szerey Syndrome and other even rarer CTCL's for example we discussed PTCL - NOS a rare but deadly branch of the CTCLs.yes I believe that it would be possible to work with 1a/b and probably 2a MF unless they had undergone Large Cell Transformation.it would be similar to working with ezecma or psoriasis, often difficult.with 2b to 4b the person would spend too much time in hospital and employers wouldn't like that and as happened with me you would be encouraged to take  a medical severance package.with any, even 1a,MF if it underwent cellular transformation into Large Cell Mycosis Fungoides your life would be in great danger and you probably wouldn't be able to work.infact I worked for over 15 years with stages 1a to 2a because I didn't know I had them and thought that I had ezecma and then psoriasis and Mycosis Fungoides was only diagnosed at 2b.

This Forum has been fascinating and hugely informative for me.  I am most grateful.  

New boy here ... and oh, so confused. 

Where to begin?  ...  I should perhaps note that I have only very recently become concerned.  I live in London in the UK, will be 66 next month and am - on the whole I think - in rude health.  This week I had a full blood count (as standard practice) and it came up complelely normal on all counts.  I have not had fevers that I am aware of.  I did have one night sweat - but it was the first hot night and I was under full covers.  The next night I opened a window and put on a vapouriser.  Havent' had one since.  I have no noticable gland lumps that I can see.  I had a dentist check my neck out the other day and she said it felt fine.  In the last week I have had sporatic itching in my armpits without a noticable rash.  I read somewhere that thick toenails were also a sign of MF.  I have such a condition on my two big toes for some years but manage to keep it at bay. 

Mori mentions in one post that he had experienced 'duller and browner patches ... on one buttock.  The skin texture was roughened.'  I have exactly this.  I have one patch of such on the left side which is circular in shape.  Happily Mori said his were 'resolved by UVB light'.  With me there are three red spots embedded within.  They had been slightly larger - redder, flat and painful - which is how I noticed them in the first place.  They were in the exact location of three small holes in my sweaty drawers (it has been hot) worn while sitting and *** for long periods while toiling at a computer.  I had been proactively perched atop a hard latticed-topped stool.  I sent a picture (of the skin, not the stool) into my GP's surgery and was told that this was 'folliculitis'.  The doctor gave some antibiotic cream to kill the bacterial infection.  I did put it on but the skin became hugely inflamed.  I thought they might have been pressure sores so I put a hydrocolloid dressing on it.  In just 24 hours that has removed the soreness and the size of the spots has hugely reduced to mere jots.  It also turned the surrounding skin from an aroused rouge into the aforementioned circle of leathery brown.    

I write now because I would like to be seen by someone who has some awareness of this condition.  The doctor at my gp surgery (the one to whom I 'sent in pictures' which it is now de rigueur it seems to do - no one actually seeing anyone anyone)  had never - it seems - heard of lymphoma - 'what?' he kept saying - let alone MF.  I have to say it doesn't exactly inspire confidence.  (Plus he initially gave me a different surgery's email address to send the pictures to.)  

I would like to SEE someone who actually has some awareness of this condition if that was remotely possible.  I have done the search on the hugely informative American site for the 'uk' as advised and one of the three 'centres of excellence' - a London hospital - is VERY close to where I actually live.  I can easily walk there in 20 minutes.  Indeed I had the blood counts done there.  

There are two people with telephone numbers listed there.  Could I ask them for a reference for someone to see privately - with an awareness - who could possibly refer me ... if applicable of course - or who could at very least write to my GP surgery suggesting - again only if apt - that I should be referred.  (It is clear this surgery does very little of its own volition ... even if they had heard of the condition[s].)  

If someone here knows of someone in London I could see I would be most grateful for your advice in a Private Message.  (I hope I'm not breaking any rules by saying that.  Certainly that is not my intent.)  

I'm so grateful you are here.  You are providing a very valuable public service for which I - among an ever burgeoning many it seems - am/are hugely grateful.

Bless you for ALL.  

Hi meunir 

I sympathise what you must be feeling and I went through the same. MF is such a rare disease that most GP's will have no knowledge of. Have you asked your GP to refer you to a dermatologist? If you haven't then I suggest you do. It was the dermatologist who initially diagnosed MF on me and he then referred me to a centre of excellence hospital.

My advice would be to ask your GP to refer you to a dermatologist. Once you have been referred to a dermatologist you can then ask the Doctor what your concerns are and what you think it may be.

Hope I have helped and keep us updated

Kind Regards 

Jay

Thanks so, Jay and Andy.  I am SO grateful for your kind advice.

I actually have an appointment with a dermatologist next Thursday who is - in reality - a consultant with that very institute of dermatology now located in the hospital referenced.  The irony is that I had that appointment before I ever had these symptoms.  I was going to him just to check on a simple wound.

My tale of woe is slightly complicated ... I will relate it:  I had made a small accident with a knife on 26th May lunchtime.  I had some food stuck to a plate and was trying to force it when the knife slipped and went into the other hand's palm.  Obviously it bleed.  I carried it to the bathroom and washed it and then doused it with hydrogen peroxide - and I know that was a mistake NOW - before holding it and stopping the bleeding.  This is what haunts me.  The wound is actually healing fine.  Still I doused it with 6% hydrogen peroxide undiluted.  I SO WISH I DIDN'T.  I am panicing now in the destitute fear that I have have given myself this cancer through use of that carcinagen.  That's what stings.  That's what is haunting my every waking hour at the moment.  I had no complaints like this before.  None whatsoever.  

In truth the itching and the small redness on the left cheek of my buttock only began - if memory serves - last Saturday or Sunday.  This is slightly complicated by the fact that I'd had some dental work done; a preparation for a replacement crown.  The temporary for that crown (it has now been replaced) did not reach the gum line.  There was perhaps a millimetre space which was - I was told - so the gums did not recede with the temporary pushing against them.  I was fearful that food and all sorts would get in.  I went to another dentist who I'd known for decades who took an x-ray and told me everything was fine.  I had nicked the gum above the preparation with a style I had been using to clean the offending space and gave myself a mouth ulcer there.  The sharp edge of the temporary had also given me a more substantial mouth ulcer on the cheek beyond.  Both have now completely healed.  Still, at the time, the 2nd dentist gave me seven days worth of anitbiotics - amoxcillin 500 mg - 'as a precaution against any infection'.  I took these .... for four days ... and stopped thinking there was really no point.  I had the new crown last Friday.  I think it was on the Saturday that I first noticed the itching.  It could be related to the antibiotics.  I think it was on the Sunday when I noticed the hurt on the left buttock cheek below and first looked at it.  (I'm not in the habit otherwise I fear.)  I have described above the trial with the GP photo and then my own estimation it might well be a category one pressure sore.  

I have just this afternoon gone and seen another GP - not at my surgery.  She was very kind.  She did say there was a very slight fungal rash under my arms (that could have been from the antibiotics - there was in fact one day where I think I may have accidently taken two of the silly things for one time period) .... and this last GP actually looked - bless her - at my bottom.  She pressed on both sides of it ... and - it is true I can no longer feel any pain - the hydracollide seems to have done the trick - and then preceded to say a number of times that 'there is nothing there.... There is nothing there.'.  When I take my phone light and actually look close (it's hard with your head bent through your legs) I can see that it may not actually be brown ... and the skin does go to white when pressed - but the remnants of the two small red sores are there.  They don't.  I can't be sure.  I wish I had a better view of my own other half.  

My main concern remains the hydrogen peroxide and the fact that I might have done this to myself.  That - in the truest sense - stings.  That more than anything else probably counts for the insomnia.  She said to be clearly that the incident with the hydrogen peroxide was on 26th May.  'If' she said 'there was to be a severe reaction of any kind it would have been seen much earlier - and definitely would have been seen in the wound of the hand cut where it was actually doused.  

Perhaps it is the brain that is playing tricks.  I can only pray that is the case.  As I say, this time last week I'd never heard of MF - and knew little I fear about.  

I can only thank you for your patience in regard to this silly old fool which is me.  Bless you for your support.  It means much.

Bless you for ALL.  

Hi Mori, I hope you are doing well these days.

 I have been reading this thread this morning as it seems I am about to be diagnosed with Mycosis Fungoides.  

i first noticed a smallish pink circle on my lower abdomen 2 yrs ago today (I took a photo of it to monitor) on the site of a sterilisation operation many years ago.

I showed the circle to a Dr who was treating my husband's heart condition, to ask if he thought I needed to see anyone about it.  He told me to just keep a check on it.

Early January 2020 hubby and I spent the winter in India, but cut short our holiday in March, due to rising cases of Covid and the threat of flight cancellations, and returned to Turkey where we live.  Whilst in India I noticed red patches on the inside of my upper thighs....but didn't pay any heed to them.....fast forward through the non-year of 2020, when we were confined to the house most days, to Spring 2021 when my usual leggings gave way to shorts and dresses and I again noticed the red blotches on my legs and now inside upper arms. I saw my GP who thought it could be Lupus - he prescribed antibiotics and gel to apply, but that did t touch it.  I the. Saw a dermatologist at my local hospital who instantly told me I need further tests.  When pressed, she thought it may be Rheumatoid Arthritis.  She sent me for a range of blood tests, which were all normal.

on Tuesday of this week I saw a Professor Dr at a nearby University Hospital- he heads their Dermatology dept.  He told me it is neither of the other conditions and mentioned Mycosis Fungoides.  Like many people, I'd never heard of it - and reading your stories it seems I have been lucky if it is the correct diagnosis so early on.  He ordered 2 biopsies and I need to see him again in 3 weeks, 14th July.

To say I was shocked at his proposed diagnosis is an understatement, as I'd never even considered it could be a form of cancer.  Everyone is naturally telling me not to worry until I get the results, but equally naturally, I am, hence my searching the internet for more info on progression, stages, treatments etc - and came across this very informative thread.

Sorry for a long first post, but I just felt I need to reach out to others who have gone through the same.

I should add I am 63 years old, and I guess lucky to be living in a country with an abundance of natural sunshine

Just want to check in and to say that I saw a noted dermatologist today - (indeed the one mentioned above at a centre of excellence in the UK) - and was - happily - given an all-clear.  Afterwards I found myself standing on the street simply marvelling much like a child released on holiday.

This has been a very strange time for me - but am grateful to Mori, Andy and all for your support and to have had an opportunity to learn more about MF/FMF/CTCL .  My admiration for your courage and warmth is without bound.  

Oh, and here's hoping, Fastlady29, that all works out for you as I'm sure it will.  What a wonderful life you have lived/live.  May the sun ever rise and shine in your glory.   

Hi fastlady29
 

I was there where you are right now!! So I can relate. When I was first got diagnosed I was in constant worry and I kept on searching for answers. Naturally when you here the word cancer you think that's it I've got a death sentence. I kept on searching and doing research on this rare disease. Then I came on this site which was a blessing!! 
 

I am going to give you same advice that I got from Andy and Mori ... 85% of people who do get diagnosed with this disease doesn't mount to anything serious and live to have a normal life expectancy. From my understanding your probably on stage 1A/1B which is early stage. The treatment for that would be NARROW BAND UVB which is like going to a sun tanning bed. You will be prescribed with steroid cream and some dermatological moisturing creams. For the majority of us hopefully that will be all the treatment required. 
 

Hopefully my words have helped. Please don't worry, it's one of those rare disease which we have to live with it's not a death sentence for the majority of us.

Also go on the site CUTANEOUS LYPHOMA FOUNDATION in there you will find all the answers to your questions. Very informative like for this rare cancer which was recommended to me by Andy and Mori. 
 

Hopefully my words have come to some use, keep us updated!

kind Regards 

Jay

Hi Meunier 

I am really happy for you. I am glad it's worked out alright at the end. 
 

Kind Regards 

Jay