Mycosis Fungoides – Skin Lymphoma
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35 posts since
28 Mar 2015
Hi folks
Diagnosed with a rare lymphoma.
The doctors haven’t communicated clearly – perhaps because it is rare.
Consequently there’s nobody to talk to.
it’s not agressive, just yet. It might turn nasty. I just don’t know.
it’s a bit of a “science fiction” cancer – a blood and immune system cancer that manifests itself on the the skin.
It’s low grade at the moment. Just stage 1A. Nothing to complain about.
A reminder of the inevitable I suppose.
Meh.
2645 posts since
11 Oct 2010
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 here 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
35 posts since
28 Mar 2015
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
2645 posts since
11 Oct 2010
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
87 posts since
17 Jul 2015
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
35 posts since
28 Mar 2015
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
3 posts since
27 Dec 2016
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?
2 posts since
12 Mar 2017
35 posts since
28 Mar 2015
1 posts since
16 Sep 2017
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.
6 posts since
30 May 2018
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.
35 posts since
28 Mar 2015
Hello Adam
my condolences on the loss of your mum in such a terrible way.
CTCL Mycosis Fungoides is a strange beast. Stage I A & IB are typically indolent, and you can get on with life and work with those stages.
At stage IIB, the skin involvement morphs from patches and plaques to tumours. At that stage one should be considering stopping work, and realise that the disease is very serious. As you correctly point out, the destruction of the skin barrier can cause death through infection.
The point I was trying to make is that disease progression is not automatic. In about 75 to 80% of patients, the disease does not progress.
However, if CTCL does progress to higher stages, it is simply awful. The reason I stressed that most patients don’t progress, is to not alarm the majority of newly diagnosed sufferers. Many newly diagnosed CTCL MF patients use Dr Google, and see pictures of tumours like your mother had, and freak out. I certainly did.
My CTCL MF has been stable and indolent for the past 9 years, and I haven’t progressed above stage IA. I have UVB light therapy periodically, and that sends the proliferating T-cells to oblivion.
Each patient is slightly different. CTCL MF is not caused by a mutation of a single gene, but is caused by mutations of a basket of genes, maybe 15 to 20 genes. Everybody’s basket is different.
So, to the newly diagnosed reading this post, please don’t assume that the terrible suffering that Adam’s mum endured will happen to you.
Please find a haemo-oncologist or dermatologist who knows about the disease, and try and get yourself staged.
If you’re staged at II B or above, the disease is not indolent, it’s a very serious life-threatening condition.
I hope this helps.
6 posts since
30 May 2018
I am sorry if I sounded like I was trying to scare anyone, I guess that I am in so much pain right now, I loved her so much, she was my best friend as well and my only freind. I was outcasted by “fake” friends years ago, it hurt my confidence and she was the only one that understood me and comforted me. It broke my heart seeing her on an oxygen machine and trying to get the fluid off her lungs.
It’s all my fault, I and my family should of took her into private healthcare at the first signs of her symptoms. She saw about 5 local surgery doctors before they took her seriously over the course of a year. I let her down, she would still be here like yourself if she was refered quicker to someone who knew what they were doing. NHS has let my Mum down, I just want to speak to her again but I can’t. Another person on here I spoke to a few weeks ago, his/her mum also passed away in same circumstances where the NHS let their Mum down as well with poor/late diagnosis which resulted in poor outcomes.
I am glad you are still in remission but you have to understand as we have been told that finding an oncologist in this field in the UK is very difficult. Privately we would of, but there isn’t an oncology center for about 100 miles from here. I am in so much regret right now of what I could of/should of done to save her life. 68 is too young imo and I am 32, I have lost both parents now. My Dad died in 2010 of an even worse condition, Bile Duct cancer which has a very poor prognosis. I even thought it was Psorasis because, you trust your Doctor’s decisions. Obviously those decisions have haunted me since Mum’s passing.
Doctors need to be trained better in diagnosing and refering patients because they are sending people with this disease to their doom. Doctors in local surgerys obviously don’t have the knowledge but they should still refer you to an oncologist ASAP because they are playing with fire.
35 posts since
28 Mar 2015
Hi Adam
I’m sorry to hear about your pain and anger over the tragic loss of your mum. Your suffering is obvious and raw.
Please try not blame yourself that it should have been identified earlier, because CTCL MF is such a rare cancer.
To illustrate just how difficult it is to diagnose, I read an journal article by Don. B. Cauthen MD that was published in 1994. The title of the journal article is ‘Family Practice Incidence Rates’.
In that article, the author estimated that the average doctor would have around 2,000 patients, and would for example see 6.2 cases of cardiovascular mortality per year. The same doctor would see 1 case of tuberculosis every 5.6 years.
The author used the same methodology to determine that the family practice doctor would see 1 case of Mycosis Fungoides every 172 years.
In that context it is unsurprising that 5 local surgery doctors did not know what your poor mum had.
In my case it was discovered by accident. I was seeing a dermatologist about some skin issues, and happened to mention the strange red patches on my lower legs. Being a dermatologist, he took some skin punch biopsies and sent them to a dermopathologist. The dermopathologist had a hunch, and applied the correct staining solution to the samples, and I was diagnosed in a fortnight. That is exceptional. It is not unusal to hear that Mycosis Fungoides can take 3 years or longer to diagnose.
I hope that you overcome your grief Adam.
6 posts since
16 Feb 2018
Hi Aronoel,
May i know how’s your son now? what treatment does he have currently? Is his tumor shrink totally? Hope you can enlighten me. Thank you.
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