Thanks Mori, Jay and Jayne for your responses.  

I will follow up the link thanks Mori.  I'm having UVB treatment too at the moment - in the middle of our unusually hot summer.  Never had to resort to it in summer before so that is another indication of the progression. 

I undertsand that the lipid problem is one of the two  likely side effect but that is easily dealt with by statins, but the bigger issue seems to be that the drug can often affect the thyroid function and hence cause tiredness, joint pains, headaches and even depression. Having been clinically depressed for some years when I was in my 20s ( al long time ago) I don't want to risk going back there.

I'm interested in the plaques and rashes people get.  I have chatted to the Dermatologist about it in the past and she says there isn't really a typical MF rash, though Plaques (thickening of the skin ) are common.  I've never had plaques just a firey red rash.  Last week when I saw the specialist he estimated it to be over 75% of my body.  

I'm quite careful with my diet and not noticed any particular effect.  One thing that is interesting is that I do seem to be affected by my own sweat!  I'm quite a fit person and exercise a lot - Gym/cycling/walking, used to run a lot but the joints aren't up to that now,  and i have noticed that if I delay in getting a shower quickly after exercising that the rash can become more itchy and red. 

I'm still not sure whether to take the drug or not. One day i feel yes and the next no.  I have an appointment for the middle of August at the specialist clinic to get me started on Targretin so will need to make a decision soon.  I'll keep you posted.

Thanks again for your comments,

Andy

Hello folks, hope you've all been happy and healthy.

I feel bad for intruding on a thread that's probably meant for people or carers for those already diagnosed with MF, but I was curious to read about everyones' experiences at their times of diagnoses (after being made aware of this rare disease by too much web searching...).

I'm in my mid-30s and recently saw a dermatologist about a variety of skin problems that have been coming on in the last year or two. She didn't seem confident in her conclusion, but put it down to a yeast-related dermatitis. Few hyperpigmented patches around the upper body, few psoriasis-like patches, and a few isolated acne-like papules that have come and gone around my trunk and face. Also been having a general feeling of malaise and pains, which doesn't help my anxiety.

From what I read about MF, there appears to be rather clear stages of progressions with skin issues.

Has anyone out there been diagnosed without the typical progression (e.g. straight to getting tumours without patches)?

(Also a hello to Mori from a fellow Perthian. )

Hello Mick006

It's the rarest of rashes, and a *** to diagnose.  It's not unusual for years to transpire before dematologists can make a conclusive diagnosis of Cutaneous T-Cell Lymphoma. 

Which in my case was plain vanilla "Mycosis Fungoides" CTCL.  However, there are several types Cutaneous Lymphomas.

I was iniatially diagnosed after a talented dermo-pathologist used the correct stain and noticed T-Cell inflitarates.  The diagnosis was confirmed at the heamatology department of a Perth teaching hospital when I was staged.  This required blood tests and a bone marrow biopsy.  My DNA had been changed, it had mutated.

My lay understanding is that the typical progression of CTCL Mycosis Fungoides is something like:

Stage IA - patches of redness/scaly skin comprising less than 10% of the total skin surface.

Stage IB - more than 10% of the total skin surface.

Stage IIA - Plaques form, which are raised patches.  That is, the patches become elvated as the cancerous T-Cell lymphocytes proliferate, and "gain depth".

Stage II B - the plaques can become tumours.

And further stages become more awful.....

My understanding is that about 80-85% of folks are diagnosed with, and remain at, the lower stages, being stages IA and IB.  However, there have been postings on the Cancer Chat site of folks with higher stages, that is, stage II B and above.  As to whether they had "non-linear" progression, I don't know.

I'm also aware, from the the CLF listserve (see my previous post above), that everyone seems to be slightly different.

One can speculate, and Dr. Google doesn't help in that regard.  On your next visit, perhaps ask for a punch biospy, and ask for a dermo-pathologist to look for the presence T-Cell infiltrates.  That can be expensive though.

Good luck.

Regards - Mori 

In my case it, MF,sort of followed the text book progression from patch to tumour (1A to 2B) and it took about 10 years although I thought that it was eczema and then psoriasis for about 9 of those years.Some other CTCL's and PCTL's produce tumours straight away I've read and don't follow the patch/plaque/tumour movement but maybe not all Mycosis Fungoides does either? There's also the Cutaneous B Cell Lymphomas to consider although I don't know much about them having just briefly explored them but I believe that they are less serious than the T Cell ones.

Hiya Pedz

It's not a stupid question.

I don't know if you can have both conditions at the same time.

What I do know is that MF can be seriously difficult to diagnose, because it can often mimic other medical problems.

You mentioned that you had been diagnosed with MF in 2012.  Was the diagnosis by a dermatologist?  Or a haematologist at a public hospital?

You haven't mentioned what the speciality of the current doctor is.  Is this a new doctor, that's perhaps unfamiliar with this rare disease?

Diagnosis of MF generally needs multiple "indications".  For example, punch biopsies, with dermopatholgy expert reports, bone marrow biopsies, and DNA sequencing.  This means medical teams, rather than a single medical practicioners.

Since you have an existing diagnosis of MF/CTCL, I would personally be placing my trust in a medical centre of excellence that deals with this rare disease.  I think the UK has three or four of these expert multidisciplinary hospitals.

The bottom line is that indidual medical practitioners aren't experienced enough to deal with this rare disease.

I would personally start UV treatment ASAP to see if that helps.

Regards - Mori

Hi, sorry. I was diagnosed by a doctor who did a biopsy. He was a dermatologist and the Doctor I see now is also a dermatologist, I've been seeing him since 2013  straight after the original diagnosis. I was told before the biopsy that they thought I had eczema or psoriasis, but after the biopsy, it was actually Mycosis Fungoides. They didn't actually explain anything about it at the time. They told me the name and then asked to take photos because it's such a rare condition in people of my age (at the time.)

I've had UVB treatment in 2013, not sure how many but it was 3 times a week for a few months. That didn't really help much so the dermatologist decided Bath PUVA would be best. and over the last 9 years, I've had around 200 Bath PUVA treatments (3 times fortnightly,) which according to the things I sign I shouldn't pass 150, but they have done that. The treatment meant my skin calmed down for a few months and then would get worse again. It's worse now in that I have red/brown patches all over my body and on some of the patches I have really thick scales. I say some, but it's a lot. That's why they thought to test for Psoriasis.

I just don't understand how one biopsy can say I have this condition and then years later the dermatologist decides 'Nah, it can't be 2 conditions at once, I'll change my mind'.

I should think that it's possible to have psoriasis and Mycosis Fungoides as I know that you can have eczema and psoriasis but it's very rare apparently.I think that MF is diagnosed by excluding less serious conditions like eczema and psoriasis.They are unpleasant but not malignant.As I understand it sometimes the cell markers in the inflamed skin are very similar in all of these disorders.It'll be better for you if it is psoriasis as it doesn't have the danger associated with MF.

Oh, obviously I'd rather it be Psoriasis, but I'm confused by how I can get a biopsy say one thing and then a doctor around 10 years later says "I only believe in one condition at a time". I don't get that way of thinking. Just because that's what you believe doesn't make it fact, you know? My concern is if he decides to change the diagnosis to Psoriasis and remove the original diagnosis then if I need anything checked liked I've had done, an example is lymph nodes then they won't be checked by him anymore. It's very concerning.

Mine was misdiagnosed originally as eczema and then psoriasis but as mine became stage 2b it produced very unpleasant tumours leading to an amputation so it was a bit of a give away that they were dealing with something pretty potent and suspected either Mycosis Fungoides or PCTL NOS but as it wasn't nodal that ruled out PCTL NOS.I'd never heard of Mycosis Fungoides or PCTL NOS before then!