Hello Mori,

Welcome to Cancer Chat! It does sound like a rare lymphoma - I did a search in our forum for past posts to see if there was anyone else who had posted about Mycosis Fungoides before and there was one person two years ago whose mother had Mycosis Fungoides (I won't even try to pronounce that!)- you can read their story and respond if you wish but as it was posted a while ago it is hard to predict whether the original poster will respond.

You have come to the right place and here you will find others to talk to and will hopefully feel less alone after joining this forum. I hope someone with the same type of lymphoma will see your post and reply soon, as well as some of our other members who may have felt like you after being diagnosed with a rare cancer.

We also have some information on T Cell Lymphoma of the Skin and mycosis fungoides here.

Best wishes, 

Lucie

Many thanks Lucie :-)

I'm not expecting any replies - the incidence is 1 in 250,000.

I'm a librarian, and doing lots of research on this rare beastie.

My stage is low, and Mr Reaper's preferred ordinance will probably be other means.  The fags I smoke and the red wine that I love.

I'm still working at age 55.  The big question for me is whether I should make a decision to throw the job in, and enjoy travel while I am still able.

I am in awe of your persona Lucie.  I figure that you have have been through some TOUGH times.

MWAH :-)

Hi Mori,

Sorry I have only just seen your lovely response to my thread - thank you for your kind words! How have you been since you last posted? Have you managed to do some travelling?

Well, well well... I just wanted to let you know that someone posted tonight who also has mycosis fungoides. You can read bestbaba's post here. Hopefully you can support each other since you both have this rare condition.

Best wishes,

Lucie

What are your symptoms? Did you have a high wbc? I recently have a swollen lymph node in the auxillary, night sweats, lossing weight nust dont feel good i have a rash on my neck. Just waiting for a diagnosis. Thank you berd

Hello Berd

I hope your diagnosis arrives soon!

I have a really rare NH Lymphoma called Mycosis Fungoides, that typically manifests itself as itchy patches on the skin in the early stages.  Mycosis Fungiodes is a misnomer, that name was given by the French physicians who first wrote about the disease a 100 years ago.  It is really a form of Cutaneous T-Cell Lymphoma (CTCL).  There are quite a few weird variants of the disease.

I was diagnosed 6 years ago and the itchy patches come and go, but for me the disease is largely indolent - which means it's not aggressive.

While you have a rash, I think it would be wrong for me to conclude that you absolutely have a CTCL Berd.  You really need a diagnosis, so that you can better appreciate what you are facing.

Getting a diagnosis might not be straightforward, as may have to go back for a battery of other tests as the haematologists narrow down what the disease might be. 

On a positive note, loads of research and progress is being made on blood cancers, especially on B-Cell lymphoma. 

When a final diagnosis is made, you will need to read as much as you can on the topic.  Treatments are incredibly varied, depending on which blood cancer you have.

Thinking of you - Mori :-)

hI Mori

how are you after a year?

i'm a stage 3 mf sufferer, in wales uk, diagnosed about 8 years ago. Hopefully you might not have significant trouble for ages. In my case suddenly things blew up this november with skin lumps and bumps, now a problem...but in all the time before, i only needed uvb treatment on an off, and steroid creams for really dry bits, to keep the skin in reasonable condition.and moisturisers of course.

All i would say is, just check regularly for any skin or lymph node bumps . If the medics are on form they shoud be checking lymph nodes anyway, as routine.

So have those holidays anyway, ... did you go yet?

Hello my son is 16 and doctors are suspicious for MF. He had a tumor which was biopsied. No treatment recommended at this time and the tumor sponstaneiusly regressed. Like you I feel uncertain frightened and looking for answers. How is your child and where is he getting treatment. We are in New York.

Hi, there I know this is an old post but I have to disagree with you. My Mum died sequelate of this disease at the end of May this year 2018. It is a nasty, cruel disease and 88% of patients in stage 3 and 4 die because of infections. It comes with a high risk of infection, and my Mum died from MRSA, a UTI and Pneumonia infection with pluerisy on the lungs and metasis to the lungs, what the hell did she ever do to deserve this?! It makes me so angry that the disease decided to take it just a little further. It took over a year to get a diagnosis and referal, her referal was delayed time after time which I will be suing the local surgery for. They kept saying it was Psorasis and then Dermatitus. So to say that 88% do not progress is rubbish! My Mum progressed to stage three within two-three years and because it's often misdiagnosed, patients do progress to later stages and are at risk of infections and erythroderma and oedma. People die of the disease no not directly of it, but of what it does to you and your immune system. It will completely destroy it leaving you wide open to Pneumonia and Sepsis. Stage 4 it starts to speed up and eventually spreads from the lymph nodes to the lungs, spleen and kidneys, sometimes even stomach.

It is very common in this disease that has no cure, poor prognosis outcomes and high infection rate to come with odema in the legs and or arms. My Mum had huge leisions in her legs and swelling, making it difficult to get mobile. The disease may be indolent but the quality of life, is just so poor. Doctors are completely clueless how to tackle this disease and if your lucky you will get specialist in this field of this disease which is also rare to find an Oncologist and Dermatologist that actually knows about Mycosis Fungoides or Sezary Syndrome.

Chemotherapy is a waste of time on this disease, it just made Mum feel worse. All Doctors did was to chuck lots and lots of different creams that worked, then stopped working then tried another one. I cry so much not only for the grief I am in, loss of my best friend but also the suffering I had to witness whilst caring for her. In actual fact, at one point in stage 3, yes Chemo was shrinking tumors in the lymph node sites, however it was also destroying her immune system which sent her back into hospital several times with chest infections. Eventually the Chemotherapy Caelyx stopped working, and the cancer had outsmarted it, becoming resistant to any Chemo treatment, her second line chemo also failed. Mycosis Fungoides is a very rare disease, it's not a skin cancer although it manifests in the skin, it's actually a blood cancer that destroys your T Cells, it's an autoimmune disease, rendering your immune system useless.