Hi Mary,

Welcome to the club.  I've had MF for 10 years now and was diagnosed about 5 years ago at 1B like you so it's encouraging to hear somebody say they have been 1B for 20 years.  I struck lucky 5 years ago when I was seen by a new consultant dermatologist at my local hospital who knew straight away what was wrong with me. Her predecessors had failed to diagnose MF. This kind lady referred me to a specialist MF centre in London and they have been managing me jointly with the local dermatologist since then.  The only treatment I have is emollient creams, steroid creams and like Mori, occasional UVB sessions.  I'm intrigued to know what treatment you have had that has caused Lymphoedema - if you don't mind saying.  I've been told by the specialist centre that no other treatment is advised unless my lymph nodes start to swell.  They are checked every time I go for a checkup and so far they are fine.  I know a lady who developed Lymphoedema after being treated for breast cancer, but her treatment, as you can imagine, was pretty nasty.

Hope they get the Lymphoedema under control.

Good to hear from you,

Andy

Hi Mori,

Appreciate your response. I live in Liverpool, UK and have had PUVA and CTL01 treatment twice a year for several years now. Mine is a blood cancer that manifests itself in my skin. Iam under an excellent centre that is undertaking a study on MF and have an excellent Dermatologist.

I will try the link as it would be good to network with others for support.

Thank you

Mary

Yes Mycosis Fungoides, and presumably the other CTCL's, cause the lymph nodes to swell.I think that MF cells must get caught in them but at a very low level and if they take them out they might not detect Lymphoma in them.They take them out if they reach 15mm.I am stage 2b and I think I've had Mycosis Fungoides since about 2005 and when I would have been 1a it was misdiagnosed as ezecma and then psoriasis but when some very unpleasant tumours came causing an amputation it was correctly diagnosed after that.I have to undergo Total Electron Beam Radiation therapy now probably starting in May.Everyone is different so it effects people in different ways and they say only 30 percent of people advance to the advance more aggressive malignancy which is anything above 2a but as it's pretty rare I don't know how correct these figures are.

Hi Canopus7

I've not had Total Skin Electron Beam Therapy (TSEBT) for Mycosis Fungoides, but I have read about the treatment.

I gather you have to adopt particular standing poses, so that the irradiation covers all areas.  I've also read that eye shields are fitted.

Stage 2B is a serious staging Canopus - it's the tumour stage, and I do hope that the TSEBT brings your MF under control.

It's been ages since I read the medical literature, but I think it may be that around 18-20% of MF patients advance to the more serious stages.

Mori

Yes stage 2b is tumour stage Mycosis Fungoides which I have had but don't have any at the moment (tumours)just patches and plaques.2b is also the stage that anyone who develops Transformed Mycosis Fungoides will be moved to,say that they are 1a and transformation occurs then they are moved to 2b.You are correct about the funny stances that have to be adopted in Total Electron Beam Radiation therapy to be honest it doesn't seem to offer much advantage over local radiation as either way after about a year it'll be back!The information differs on how many people develop advanced Mycosis Fungoides some say as high as 30 percent some as low as 10 but you get this in rare ailments.Funnily enough given how rare MF is my sister had a friend in the USA, around Houston,who died from stage 4a of this malignancy last year and we had a family friend a few years ago who developed a really wierd skin disease and died from it and that turned out to be PCTL NOS a close relative of Mycosis Fungoides.

Hi, 

I know we're not allowed to post specific centres but if you search London leading dermatology centres, the one near London Bridge and Waterloo should come up. 
I am so sorry to hear about your son and hope he's ok. Xx

Hi all,

Our chat page seems to have gone a bit quiet recently.  Hope evreybody is coping OK with MF and Covid or anything else. 

Has anyone had any experience of taking Bexarotene (also known as Targretin) ?  I went for my routine checkup recently at the specialist centre in London and because I am finding it more difficult to control my flare ups with just steroid ointments and phototherapy, they have recommended that I should start taking this drug.  I've read the information they gave me and have done some on line research and the side effects look potentially horrid to say the least.  I'm 72 and at my stage of life quality of life is as important as quantity and I don't want to spend however many years I've got left struggling with the side effects of drugs.  Can anyone comment on how effective it as at controlling the symptoms of MF and what the side effects are like in practice? I'd be very grateful to hear if anybody does have any experience.

Andy

Hello Andy

Targretin can be managed, and you can have quality of life. 

You need to consider a multidisciplinary approach, and get a referral to an endocrinologist to deal with the nasty effects of Targretin.  I think it does CRAZY things to lipid levels.  An additional prescription may be required.

As you've been prescribed Targretin, I suggest you could consider looking at:

www.clfoundation.org/online-support-groups

The CLF listserve is good - the best in fact.   But welcome to The Wild West.

I'm having UVB "prevention tans" here, after all it's mid-winter. 3 minutes a day, 3 days a week.

Cheers - Mori

Hi Andy 

Really sorry to hear about your flare ups. I have heard of the 2 medication that you have mentioned but I haven't looked into it that much so have got much of a information in regards to it. I really Hope this new treatment works for you Andy!!! Will pray for you and keep us updated on your progress.

King Regards 

Jay