Hi Jay,

My local dermatologist told me about the raised level of T-cell clones and that was what told her I had MF.  Evereybody has T-cells as part of our immune system and many of them reside in the skin called cutaneous T -cells.  With MF these T cells go out of control and multiply and develop clones. This is what Cutaneous T-cell Lymphoma (CTCL) is.  There are two main types of it and MF is the better one to have.

Andy

Hi Andy

Thanks for your reply and your explanation. It’s just when it said clones I just thought I might have got something else but now that you have explained it to me I understand. I really do appreciate you taking time out and replying to my messages THANK YOU

jay

Hello All My best wishes to all who are dealing with this. My mum was diagnosed a few weeks ago after a biopsy ( we went private) - local Drs had been saying psoriasis etc etc for a few years. Mum is 84 and has possibly had it for a few years - she has a thyroid disorder and recently B12 deficiancy so I get the feeling all is a bit related - immune system, endocrine etc etc plus age. Mum is sanguine - skin Dr said it may be worth following up as well with a scan which upon reading more about it yes heck we will go NHS and check to see what they say. As its a non h - lymphoma I hope they look at it as it is rather than a skin condition and at least offer a blood test / scan. Good news is initial cream and pending light treatment look like a good start and already the skin is looking better but it seems key to have it staged. Will give an update as it seems this is a really excellent forum to share. Best wishes everyone, L

Addendum - saw the NHS GP - advised she could not push us for further NHS checks as the diagnosis from the private dermatologist said "it could be MF" rather than it was ( even though we were advised it was diagnosed by a pathologist it wasnt in the letter). She had experience of misdiagnosis leading to invasive procedures which was fair enough - but clarified that she had seen an agressive case ( only other one she had seen) probably about 25/30 years ago when a student so we were lucky in that she knew what it was all about. However she dictated a letter to the NHS dermatologist we are due to see re light therapy so that we can maybe get further investigations or referrals if needed. 

Summary - it helps t have a goal as to what you want to aim for - what you want, and make people aware of what you know realistically - and there is definatly a gap in knowledge transfer private to NHS.

Hi All,

Im writing this post to both document my experience and to serve as a warning for others going through treatment for CTCL.

I was diagnosed in November 2018. Light therapy (UVA) began around Jan 2019 for 3 months. During this time I realised my gums would bleed profusely. Sometimes with only the slightest touch of my tongue.

As I was seeing a doctor for a different issue he noticed my platelet count was very low. In fact most of the measures of immune system response were also low. He suggested I seek help from a specialist. The only possible cause I was told was the steroid cream and UV activation cream could cause this. There was no definitive reason as to why the platelets were low and so I continued on my merry way.

Around September I was having afternoon tea and the whole left side of my body went completely numb. After a short hospital visit and a misdiagnosis, I was diagnosed with Endocarditis (an infection of the endocardium...the inner lining of the heart). This caused the stroke I had (numbness) and the Endocarditis was caused by bacteria found in my blood. The most likely culprit is that it entered the bloodstream though my bleeding gums and due to a lowered immune system was able to grow.

The result of all of this was that late September I was in the operating room and required open heart surgery. I required a new heart valve and another valve needed repairing (destroyed by the bacteria). What was very unexpected was that my whole heart was covered in abscesses which needed to be cleaned and now I also require a pacemaker due to the lack of my own heart rhythm.

After 4 weeks in hospital and 3 weeks in rehab, I am glad to be back home.

I dont want to scare anyone with this information just to ensure people take care of themselves during treatment of CTCL. I am not entirely sure if the light therapy treatment was responsible for the low platelets / immune system or another factor but if something is not right seek the right help as soon as possible.

Take care of yourselves as life is the most precious gift we have.

George

Hi Mori and mfparent, 

My husband has just been diagnosed with Mycosis Fungoides 22 years after he first started to develop it. He has been treated for eczema. I've been reading your responses and your case sounds similar to his. He was finally sent for skin biopsies in July but has only just had the results back! He has been referred for UVB therapy. The rash is over 40% of his body, worse on his groin, top of his legs and lower torso, but it has gradually spread in patches up and down. He has a patch on his face now and his arm, which is what drove him to ask to see the dermatologist again for further tests. I'm really pleased to find somebody who knows what they're talking about. English is not the first language of his specialist and he was just given a leaflet to read, and I have no idea about how he goes about asking about staging. It is very alarming to see how red it has been for over 12 years on his legs, he once fell down part of a cliff and the air ambulance assumed he'd fractured his pelvis! It is still a rash, not raised, and no lumps, and it is just an irritation rather than something that ruins his life, for now at least. Would love if we could be in touch as I'm anxious at this result.

Hello Ms Wales

of course you are anxious.  The cancer word has been mentioned, and, yes, it meets the criteria.  Cells can multiply out of control, and proliferate.  And the cancer cells don't die - there is no apoptosis.

However, mutated skin resident T-cells have two weak points:  Ultra violet light, and, radiotherapy.

The mutated T-cells have been described as being exquisitely radiosensitive.  Large tumours can just "melt way".

in my case, UVB was sufficient.

Don't be alarmed if your partner reports that suddenly they have more patches - that's the UVB exposing hidden patches.

I hope that you can report, in March 2020, that your partner's patchies have reduced significantly.

Of course, annual skin checks with a top dermatologist are now required, as the UVB therapy can induce melanoma.  Melanoma is an agressive cancer, and "takes no prisoners".  

Mori

Hi All,

Here are a couple of snippets of information I picked up recently.  About 2 months ago my ankle became swollen and my GP diagnosed and successfully treated Cellulitis.  Last week I had my 6 month MF checkup with my local hospital dermatologist.  I mentioned the Cellulitis to her in passing and she said that MF impares the skins ability to fight off infection and hence lays us open to things like Cellulitis.  Anyone else had anything similar?

The other snippet was that at my checkup, the Dermatologist had another doctor present who was introduced as a GP in training.  The Dermatologist explained all about MF to her using my rashes as examples and finished by saying to her, "But MF is so rare that this could well be the only case you will ever see in your career."

Best wishes to all,

Andy

Hi AM-Wales,

Your husband's circumstances seemed quite similar to mine. I was diagnosed with MF around 18 months ago after 10 years or more of what I thought were rashes and eczema. I have 40 - 50% body coverage but the worst part is that this includes my face which I can control partly with creams and quite a strict healthy diet. I had UVB which wasn't very effective for me as I blistered and the rash returned. Also a similar experience with the dermatologist. I asked my GP to refer me to another hospital which has a Supranetwork multi disciplinary team for MF. There is more to tell but I have been advise that Total Skin Electron Beam treatment would be most effective for me. I've put this off for a bit due to the side effects and limited number of times you could have the treatment, as similarly to your husband it was not effecting me too badly. My dermatologist however persuaded me to go ahead with the treatment which should be in December. If anyone has had this I would be interested to hear how they got on.

Good luck to your husband with the UVB treatment it is supposed to be quite effective for a lot of people.

Regards J

I've had it for over 20 years now and I've been able to keep it under control by going to a tanning spa.  I started out going at least 3 times a week, now I go about once every 2 weeks, I've even gone as little as once a month sometimes.  I still have a few pink spots on my ribs that I'll get rid of if I go more often, but since they're hidden, I'm won't increase my time.  If I get new spots, then I'll up the amount of times I go.  I had it over different parts of my body and my dermatologist said to try this and see if it worked.  My oncologist says that as long as it's keeping it under control, to continue using the tanning booth.  I do have to watch out that I don't get oen of the types of skin cancer though.  

Hello

Im new here and have just been diagnosed on 16th of October with mycosis fungoides ( MF ). Since then I have had a petct scan and a bone marrow biopsy . Today I had a haematology appointment and have been told I'm a stage 3 sufferer ,my results from the biopsy are still not available yet though the petct scan showed internal organs not affected. I've gone past the rash stage and have the tumors all over the place. The day I was diagnosed my body from the neck down was completely red apparently this is called erythroderma. 

I was given steroid creams which has helped with the redness and stopped the stinging pain I was experiencing .

I have been told today that I will be having chemotherapy in about two weeks time as the doctor wants to wait on the bone marrow biopsy just to be sure that nothing else is going on. 

It has taken a full year to see a dermatologist from the time my gp requested it and this has now got out of control , I only had one or two sores at that time but now I have the tumors all over. 

This has been building up over many years in the early stages of MF as my doctor thought I had dry skin and the patches were just getting more widespread .

What a horrible disease, I'm finding it hard to believe as I thought it was some sort of allergy I may have had .

Sorry for the long first post and apologies for any spelling mistakes as I typed this on my phone. 

Regards