Mycosis Fungoides and starting to struggle
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1 posts since
7 Aug 2018
HI, i have recently been diagnosed with Mycosis Fungoides after 3 years of tests. I am told it is typically “non life threatening” but how true is this for me?? I am increasingly worried as before I was diagnosed I had a ‘needling’ treatment on my face and I am scard it may now spread as it keeps coming up in differnet places on my face despite UVA light treatment. Any feedback from other sufferers out there to ease my mind?
59 posts since
28 Mar 2015
Hi Glitter-p
in about 70 to 80% of cases, Mycosis Fungoides (MF) does not progress, and doctors categorise it as “indolent”.
I was diagnosed and staged as stage IA MF nine years ago. I had patches on my lower legs, and a few years later, some patches on my buttock. In both instances, Ultra Violet light (UVB), at my dermatologists rooms, over a couple of months, killed the profilferating T-Cells.
When you commence UVB treatment, your MF might seem to get worse – this is because MF patches that were previously not visible, become visible. The UV light seems to “draw them out of hiding” which is a good thing.
I worried like crazy for the first couple of years, and couldn’t really get good advice because the disease is so rare. The incidence is typically about 1 person per 200,000 per year. The worst thing you can do is use Dr Google, because Google Images shows ghastly pictures of Stage IIB, III and IV patients with tumours.
There’s every chance that you will be in the group of patients where the disease doesn’t progress. So don’t panic like I did.
I would not worry about needling Glitter-p. This cancer does not spread by touch. MF is a blood cancer, and, a cancer of the immune system, that manifests itself in the skin in the early stages. It’s a skin lymphoma. Many dermatologists know about it, and haematologists know even more about it. If you’ve been diagnosed with MF, have you been staged at a hospital?
The are other treatments besides UV light.
I don’t know how long you have been on UV light treatment, but if you’ve just started, see how you go over a couple of months.
I’m glad I saw your message. Don’t hesitate to ask any other questions.
11 posts since
13 Aug 2018
Hi Mori Was wondering how long did you have mf before it was diagnosed as i have awful itchy rash which dermatologist says is probably Mf but biopsy came back with nothing ! So waiting for next app to see her again so no further forward.
I am so worried though as not getting sorted my mind is doing overtime any advice would be appreciated.
Many thanks
Acer xx
59 posts since
28 Mar 2015
Hello Acer
I’m afraid that some people can take years to get properly diagnosed via skin biopsies.
On the US MF listserver, I often see messages where folks say it took 2 years, 5 years or even longer before their dermatologist could offer them a conclusive diagnosis.
If your dermatologist believes it is MF, then there’s a good chance it is. When you next see the dermatologist, ask if you can be considered for UV light treatment. Controlled UVB light, in a dermatologist’s light chamber (or a hospital light chamber) works really well for many sufferers.
If your dermatologist does not have a light chamber, ask who has.
Some dermatologists will prescribe steroid creams for early stages. That didn’t really work well for me.
Lastly, ask if your can have your DNA tested to see if there are changes to your DNA, which would conclusively prove MF. Is there a lymphoma or luekemia association you can contact? Can your GP refer you to a haematologist for other tests?
While dermatologists are often used initially, more complex cases of MF use haematologists at hospitals.
I hope this helps.
11 posts since
13 Aug 2018
Hello Mori
Many thanks for your reply thats really helpful I will mention all you said to dermatologist on my next appointment.
I have friend requested you hope thats ok ? Just nice to have someone with knowledge of this condition to talk to.
Kind Regards
Acer x
1 posts since
29 Oct 2017
Hello
I have suspected Mycosis Fungoides too and as it’s rare maybe it’s useful to add my experiences too…
So far I have had 2 biopsies which have not given a clear diagnosis, even after a 2nd review by an international expert, and I’ve had patches for 3.5 years now, so I can well believe the average diagnosis time taking over 5 years, as I’ve read. It’s very frustrating even though it seems the condition is mainly quite indolent so not too scary.
I also had 25 UVB phototherapy sessions which completely cleared up the patches but they started coming back again 2-3 months after ending the sessions. I have appointments with 2 consultants every 6 months / 1 year.
I would be interested to know how long it took for others to be diagnosed and if as a result of biopsies or bloods. Also, would be interested to know hold old anyone was when diagnosed. I understand it’s usually in later life 50+ years, but I’m 34 now, I guess that’s probably not great news for me.
Anyway, happy to share more if helpful.
Best
bmunky
59 posts since
28 Mar 2015
Hello bmunky
My initial diagnosis was via skin biopsy on my 50th birthday.
It only took a fortnight – the right biopsy went to the right dermopathologist. – a bit of a flike really.
The diagnosis was confirmed when I was staged IA in a haematology department at a teaching hospital. They used a bone marrow biopsy, and DNA testing of the samples.
With regard to your age, ask your consultants if “age at diagnosis is in indicator of higher risk of disease progression”?
I don’t think age is a factor in increasing the risk of progression.
My lay understanding is that a basket of genetic mutations cause CTCL MF – it’s not a “single gene homogeneous cancer”. Most patients have mutations that characterise the disease as indolent.
Unfortunately, 20% or maybe 25% of patients have baskets of mutations that are more serious types of mutations, and their disease may progress. In that case the disease certainly is not indolent, and patients can suffer terribly. But new treatments are continually being trialled. Communicating the duality of CTCL MF to the newly diagnosed is challenging.
Mori
7 posts since
3 Jan 2020
It can take years for a diagnosis… I was finally diagnosed recently with Cutaneous T Cell Lymphoma (which I strongly suspected) after a couple of biopsies. I’m 45 but the rash started when I was about 22! So don’t worry bmunky. It’s been slow to progress, however in the last 4 years I have developed other smaller rashes here and there and they seem to be growing a lot faster than in the past; the number of rashes have increased in the last 2 years, but still “manageable” (ie I can control the itch and make the rashes less angry/quite pale) through DIET. Diet is huge, if I had not altered my diet I’m certain it would have been a lot worse sooner. I’m only just starting to read up as much as I can on Lymphomas to better understand it all, in the mean time I’m doing what I can naturally to handle this. I’m starting psychotherapy too as I believe emotions have a LOT to do with illness generally.
After 20 years the inital rash on my thigh is quite large and lots of other smaller ones developed on legs too, buttock.. The last 3 months leading to Christmas I have not kept to my usual diet and for the first time ever my skin itches all over, so I have reverted back to what I know to work for me and after a couple of days already the itch is gone.
I am now anxious to meet with an oncologist (only saw dermatologists for now) to know what stage they would classify the condition at. I think it’s still ‘early’ stage, ie skin rash stage, but who knows what’s been going on internally, I have had ‘unexplainable’ spleen aches for the last 10 years so I’m a little concerned things might be wrong elsewhere…
Mori, if you read this: are you fully healed from CTCL now? How many years? Would you recommend uvlight treatment over the other treatment options to eliminate the profilferating T-Cells when still at a ‘skin rash’ stage?
I guess we are all individual cases but it helped me a lot to read your comments so I thought I’d take a moment to share my experience too. The images on Google are horrifying and I’m afraid to get to a different stage after so long… I haven’t told anyone I know about it as I don’t want family and friends to worry or feel sorry for me but it is a lonely place.
4 posts since
26 Jan 2020
I have just been diagnosed in early January and I am waiting for an appointment with an assessment nurse. Can anyone tell me how long it took treatment to start after the assessent as I am having to wait until the end of February for this appointment and have been on strong cortiszone cream since October so my skin is suffering. It’s now on my face so proving difficult with working.
Marguerite you mention diet can have a very positive effect so could you please let me what diet you follow? I eat healthily anyway but just want to know if there are particular things you find beneficial and things you find you should avoid.
7 posts since
3 Jan 2020
Hi Elle,
I’m also wondering how long it took after the assessment to start treatment; it probably depends on your geographical location. I’m in SW England, in my case the wait is long, trying to be patient and not let it get to me since I believe CTCL and most cancers have a lot to do with chronic stress.
I had to wait 6 months to see a dermatologist; they diagnosed me, then had to wait 2 months to see a professor at a lymphoma clinic to confirm and ‘stage’ the disease (another 2 weeks to go until I see them!) I’ve tried to use this time to inform myself, stay positive and as stress free as possible. FYI the NHS has, surprisingly, already sent me a follow up appointment for March; this will be 1 month after my assessment by the clinic. I don’t know if this is a standard timeline, it seems to be moving very slowly but it might be a lot faster for you!
While you wait, stay positive, try not read gloomy reports or videos – I made the mistake of watching a sad vlog on youtube from a women with CTCL who didn’t do well at all; it really upset me for several days so I decided to now only read articles about latest research or positiive cancer survivors stories. You can find good video testimonials on CTCL on the CLfoundation site and find other positive, inspiring and upbeat (other) cancer survivors stories who have healed completely.
Re diet, I did an eliminiation diet 5 years ago (already had CTCL for well over 15 years but had no idea!). I now no longer eat the same at all. The worst offenders were gluten, dairy, sugar (hard to cut out and a slow process for me but this had the most impact for me), alcohol, anything processed and ‘messed with’ in a factory. I now eat very little grains, and focus on an abundance of vegetables, not always organic but whenever I can. My diet keeps the rashes itch-free and looking very faint. If I deviate from it though, it starts to itch and looks more red/angry, feels tight and sore. In the last couple of years I started to get night sweats but I don’t know how to fix this right now, it’s gotten worse since the diagnosis so I put it down to stressing about the diagnosis and long wait!
About the diet, it isn’t so much about removing things but about focusing on REAL nourishment: eat anything from the earth or as close to it’s NATURAL state as possible, nothing packaged, no vegetable oils (use a little EV olive oil), nothing processed, try to help your gut bacteria. The changes are hard at first but it clearly helps. Eat tons of vegetables, greens, all the colours, focus on vegetables, nuts and seeds, lots of berries, lemons… if you eat meat limit it, tons of hydration (lymph = liquids), tons of water, non-dairy smoothies, freshly made green juices, lots of fresh herbs, parsley etc, bake your own cakes as occasional treats with natural ingredients (no sugar, use stevia or a little honey etc), move your body more, move your lymph by using a trampoline/rebounder daily, walk, cycle, do a bit of running, whatever you prefer but we need to get the lymph moving and get the toxins out. The diet changes have been a massive help for me, but importantly I’m only now really addressing emotional issues, I think this has a big part in our current ill-health, so I try to enjoy every day as a new opportunity to heal 🙂
Keep the faith, keep your chin up, keep smiling. If you make some diertary changes the rash will be a lot fainter, and no itching (or very minimal), I hope you don’t wait too long for your treatment. Stay positive and believe you will get well xx
4 posts since
26 Jan 2020
Hi Marguerite
Since my post I phoned the hospital and reminded them of the 62 day rule i.e. from diagnosis they need to be treating you within 62 days. I also badgered them to give me an earlier appointment and thank goodness they offered me a cancellation to see the assessment nurse. I was first diagnosed by a specialist privately in January and he referred me to his NHS colleague for the treatment, again I badgered them to get an appointment to see that doctor earlier than the original appointment which was set for 11th March! So please phone up and make a fuss as it has worked for me as I start PUVA treatment on the 10th February. Can anyone give me an idea of what to expect?
I cut gluten out of my diet a year ago as I did not feel myself. My effected skin is pretty widespread since when it first started with just a rash on my arm and that has been less than six months since the rash appeared. I guess I was lucky to have private medial insurance and pushed my doctor to refer me as I suspected that when the rash did not go it was something to worry about.
When you say you had this for 15 years, I am guessing the rash was limited and did not progress which worries me as mine is so extensive within such a short time and deep red in colour. There’s no way I could have coped with another month with what its like nevermind the idea of how long you have had it.
As regards to exercise I guess the depression since being diagnosed has taken its toil as I really feel tired all the time however given your advice I am going to push through and start back at the gym. I will also take a look at the positive videos.
Thank you for your advice and I hope you get some movement quickly on treatment. Lets keep in touch. xx
7 posts since
3 Jan 2020
Wow well done for getting an appointment sooner! At least you have a diagnosis and now a treatment date with PUVA, that’s good progress. I had no idea about the 62 days rule, thanks for sharing! My appointment is now a few days away so I’ll wait.
Try not to worry if your rash has become extensive in a short time compared with mine (or anyone elses), don’t forget that our personal situations, environments and bodies may be different. I’ll give further info below about the misdiagnosis in my case and about CTCL rash progression. I’ve read about PUVA and NB UVB as I’m researching every bit of info about ALL treatments, but I don’t have any experience of it so cannot comment personnally… It sounds like you are still in an early stage, just make sure they do further test to ensure none of your nodes or visceral organs are affected, this will put your mind at ease! I am hoping to get NB UVB but I’ll need to know how advanced things are in my case…
Please report back after your treatment! I’d love to know how things are going and the advice you’ve been given, etc. How did they decide on the PUVA treatment? Have you been given a stage yet?
I’d like to know about anyone’s experience with PUVA and Narrow Band UVB too and their stages. I know they ‘reserve’ radiations and chemo for stage 2. I’ve also read that they now favour more targeted treaments and combinations of treatments for CTCL FM… It would be good to hear from anyone going through combinations of treatments too for stages over 1A/1B.
I hope you can manage your stress levels since you got your diagnosis and while you wait. I’ve felt a lot worst since my diagnosis in early december; I’m sure this is due to it playing on my mind constantly so trying to stay calm and simplify my life and remove stressors…if it’s not fight or flight (ie if I’m not faced with a bear chasing me, or other real danger) I should not let it affect my peace. Easy to say, harder to put in practice but we CAN do it! 
7 posts since
3 Jan 2020
Yes, my rash was very limited at first: quite faint and small for the first 10-13 years, but in my case it was misdiagnosed as being a rare but benign skin condition (I was @21). Dermatologists said this was totally benign but that it would never go away and since there was no pain (no noticeable itch for a few years) then it was best to DO NOTHING. Creams had not worked, the only other treament was UV treatments but they underlined I’d have it my whole life because even with UV it always came back after a few weeks; they basically had no known cure for it. I’d heard of other sufferers who, after UV treament, developed skin cancer so I decided to leave it alone since it didn’t hurt and wasn’t in a visible area. The initial misdiagnosis came after skin biopsies but they never had the sense to biopsy the actual rash(!) Ijust tried to live with it as best I could… went back to the dermatologist @10 years after misdiagnosis and was prescribed canisten cream…!
I was very lucky to have a mild case of CTCL for many years which made it possible for me to carry on living a good life, despite being completely unaware for years that this was in fact a blood ‘skin’ cancer; hopefully anyone reading this with a mild case of CTCL FM will gain hope knowing that they can totally live well for decades even untreated… BUT that they should make every effort to follow their gut and actively seek alternative help without losing hope, and never take ‘no’ for an answer! 😉
4 posts since
26 Jan 2020
Hi Marguerite
I hope you have now had your appointment and have started treatment. I had a letter today saying the consultant wants to see me to discuss my results so I am only guessing the news is not good as orginally she said she would phone me with my results as soon as they came through. The more I read I believe my type is advanced and aggressive which does not bode well. I find it difficult to cope with the constant waiting and no offer of any support. I live on my own and so I now wonder how I am going to cope as the cancer gets worse. I certainly don’t want to die in a long drawn out way if I am told its in an advanced stage and aggressive. I am not sure where to start looking to find out more. The wait has been torture but I guess the news will be even more of a nightmare.
I feel alone and in total panic.
I hope you have better news.
59 posts since
28 Mar 2015
Hello Elle
the US-based Cutaneous Lymphoma Foundation has loads of helpful information:
clfoundation.org
regards – Mori
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