Diagnosis CTCL

Hi  I am so sorry to have to welcome you to the wonderful Macmillan Community. Our little corner of the Community is rather exclusive based on the fact that CTCL (my strain is Mycosis Fungodes) is on the rare side.

I am a volunteer and don't have any medical training but I do have first hand life experience.

You will see from my profile (hit my forum name) I have lived with CTCL for over 18 years when I was diagnosed when I was 44 and on the whole I did ok.

My condition went rogue over the past 4 years but I do know of many people who have had straight forward treatment with creams and UVB....... and the UVB will give you a tan on the NHS ;)

It did actually take a year for my CTCL to be correctly diagnosed and it did take 7 biopsies to get there and basically biopsies are the only way to get the diagnosis. I did have bad skin coverage but UVB and PUVA did the trick for the first 14 years. I went with my Dermatologist to a Scottish Dematology Conferance a few years back. Out of the 60 Dermatologists only 2 had every seen my condition!!

This is link to the Macmillan Lymphoma info page. CTCL is a type of Non Hodgkin's Lymphoma, it's worth a look.

I am not going say anymore at this point in time but have read through my profile but note my journey is on the extreme side of normal and get back to me with any questions, as you will have some :(

Thank you Mike. Just to add that it is presumed to be MF. Typical bathing suit distribution and had the patches for many years. We tried steroid lotion with no effect. The biopsies are saying chronic spongiotic dermatitis but as I said they are sending them off for a second opinion. I also have a kidney condition that is ok at present but I'm on a new drug that hopes to decrease the rate of deterioration and requires regular blood tests. So I'm a frequent visitor to my local hospital. 

Wow 7 biopsies - I've had 2 from my trunk and one from my shoulder. The trunk ones were pretty painful afterwards. As I said my Dermatologist is pretty certain from my clinical presentation hence the let's just get on with UVB treatment. I know it's a slow burn kind of disease that may or not get serious but I feel a bit fed up as the kidney disease is also a rare slow deterioration condition. However it is not the end of the world and I have a 10 year old who needs me and a great supportive family. Hope you have a great weekend. 

We have our 4 granddaughters up for the weekend so it will be great...... but very tiring as even two years post second Stem Cell Transplant my clock runs down quickly.

If you have had a look at my story you will see that for the first year I was being treated for bad Psoriasis and at one point in time I had a 70% body coverage.

2 of the biopsies were on my trunk with 4 on my bum all at the same time!! and one on my forehead....... but they were all ok but had rather a problem sitting down for a few days but ok ;)

But I did have a large biopsies done on my neck when my Lympnodes went out of control and I did have have some issues with that one including a very bad infection.

Have a good weekend and do your best not to over stress yourself as stress does make skin conditions play up.

Hi just to let you know that I'm in the middle of the narrow band UVB treatment and the patches are definitely fading.Having fun with contorting poses in the cabinet to try and get all the patches exposed. Biopsies are off for gene alignment and not seeing Dr again until end of Jan. It feels good to be finally doing something about it that appears to be working. Hope all's well.

Oh, oh this brings back soooooo many memories of my little white sock ;) ;) ;)

It's amazing how quick the UVB will work and you will get a free tan ;)

Are you on any retinoids (tablets) to slow down the cell growth?

Yes, keeping very well :) :)

I have suspected CTCL. Had one lesion 6 years ago which went away after 3 months, it came back now. Can CTCL come and go like that?

Hi Squirrel I just put up a reply on your other post - hit this LINK to see it.