Hello, 

my heart goes out to you! 

Hoping you will see this post... my mums has exactly the same and the doctors for like 8-10 years said it was derrmititus also, after all them years she’s now at the chemo point had every treatment going the chemo is making her more poorly than she has ever been. Doctors do not have a clue what to do. The chemo isn’t a good move I feel it definitely isn’t helping as you mention it invites infections! I feel so helpless I can’t sleep I’m doing so much research so glad I have seen this tread! My family are going through what I’ve just read here bit by bit so so devastating 

sending prayers 

Hello looloo09,  I am terribly sorry I haven't managed to reply back so soon, I currently have flu and I been in a pretty dark place at times so my motivation and enthusiasm has hit rock bottom, not all the time but just sometimes these emotions are rolling over me. I am really sorry your dear Mum is going through this as well. I really hope that she pulls through. Chemotherapy as I have seen first hand is not very nice at all, Mum was always falling asleep, my Sister said she was falling asleep in shows she wanted to go to as well too! Made her really groggy and irritated. We wanted to get Mum on a course of Immunotherapy, but the NHS didn't want to fund it, now all of a sudden, Yescarta exists on the NHS...believe me, I am angry.

Mum was denied of Radiotherapy, stem cell therapy and Immunotherapy, doctors telling us it was pointless. Now that I cannot name and shame the hospitals and doctors involved on here, but one particular Doctor kept telling Mum to use an inhaler, she kept telling us that Mum had asthma, which was absolutely wrong! Later we were told she did not have asthma, at all....she had lung cancer particles in her lungs, the cancer had spread from the lymph nodes to her lungs. So we got told this right before her death, when she had this problem of breathing 12 months ago. We had been lied to and she had poor care, something that we are currently discussing on pursuing on a legal matter. I feel there was a lot of neglect on both hospitals part, especially the hospital B where she died, where she was put on a ward with loads of other sick patients where she should of been in a quaratined bay where she would of not contracted Pnemonia, MRSA and UTI, all of this killed her and gave her heart failure. 

My advice to you is, do not let the NHS roll the wool over your eyes, make sure your mother gets better care, maybe even private and second/third opinion. I wish I had done that......it's too late now....Some NHS hospitals could not give a monkeys about your loved one, that's the state the NHS is in. The hospital where she was in, had about 20 elderly patients, all line up down a corridor because there was no beds available....disgusting! 

Your Mum can still survive, just make sure she eats well and healthy and try to minimize infections as much as possible. Infections in late stage Mycosis Fungoides has the highest mortality rate. My Mum's skin in the end was so red, that the professor in charge of her case said that nearly 89% of her body had Lymphatic involvement. She was put on a very aggressive form of therapy whilst in hospital to get the inflammation down and even I thought it was a bit excessive. Every two hours, she was woken up to put cream all over her, this 50/50 cream which worked! And it got the inflammation down but it really screwed up her mental well being and physical state due to lack of sleep. Kept being told she was going to come home with the cream. But they kept keeping in her hospital, they killed her! end of! Keeping her hospital was the WORST decision in my opinion and also keeping her on a ward with other patient made her get Pneumonia. Decisions by these "experts" that will forever haunt me.

She was my darling Mum, my best freind. We shared so much together and had so much in common, I loved caring for her, I was made redundant from my job end of 2016 and I made a commitment to look after her. I made her food, and helped with dressings on her legs and creams. Made her laugh and feel like a human being.

Some of the most upsettings times that keep coming back to me was when she was cooking, or trying to cook something on the hob, and she dropped the pot/pan and her food went everywhere, and she just broke down in tears because, her skin was so deterioated on her hands that it was just too painful. She was crying in my arms saying "Why me?! why can't I be normal?" Moments like that really hurt because I just tried to reassure her and say to her that this is not your fault, there is nothing wrong with you, everything is going to be ok Mum! But deep down, I knew it wasn't okay, I had to try and make her feel strong again and that was tough, I still feel powerless that I couldn't do anything.....It makes me very sad inside that this disease made a strong, independant and hard working woman, who was so loving, break down into nothing.

After she developed Delirium, I had lost my Mum, she wasn't the same again and then I had really lost her once her Saturation levels went through the roof, sending her into a coma. She suffocated in her sleep, 8AM in the morning, alone. Sometimes wish I was there in her final moments. Cannot fathom how scared she was.

They call it a "Rally" in medical terms, when one gets better of all sudden and then suddenly perishes. That's what happened to Mum. On the morning of 25th of May, we got a call from the Hospital nurse saying that Mum was getting better! She was up and about, jolly and happy, had breakfast etc. Somehow by some miracle, she had got rid of Pluerisy on her lungs, the pneumonia had subsided, but then  by 11am it all went downhill, and she had stopped breathing and went on to an emergency oxygen machine. It was heart breaking to see the woman that made me, the woman that I had cherished, was perishing in front of me. I have had to watch both my parents die of two rare diseases, both died age 68, which is too soon......

I pray for your Mum. There is hope. Push to try and find more out about immunotherapy, it may work! There been some very succesful testaments about Non Hodgkins Lympthomas put into remission, even at end stage. 

*Hugs*

Sending prayers also

Hello Andycc

Your experiences with UV light treatment are very similar to mine, except that I have built up to UV treatment sessions lasting almost 10 minutes.  However, that could be because of the skin type that my dermatologist determined that I have - I tan readily, and usually don't get sun burn.

If there are any newly diagnosed patients with Mycosis Fungoides reading this message, PLEASE do not use Dr Google and freak out.

Approximately 70% to 80% of cases are usually lower grade (eg stage IA, IB or IIA), and tend not to progress.  In this instance the disease is indolent, and a periodic nuisance.  Patients staged IA to IIA usually patients die with the disease, but not because of it.  It took me 2 years of reading medical literature to figure this out, and I am still annoyed that my haemo-oncologist and dermatologist did not articulate this to me.  If they had, it would have saved an awful lot of worry!

However, my heart goes out to adam1985 and looloo09, who have both seen their mothers suffer terribly with higher stages of the disease.

If you are newly diagnosed, get a referral to a teaching hospital's Haematology Department, or centre of excellence for blood cancers, and get staged.

If you are staged at IIB (tumour stage) this disease can be awful, and needs the finest medical attention you can find at a centre of excellence.  New immunotherapies are being released and the prognosis is improving - provided you get to a centre of excellence.  I'm sorry to say that the expertise to treat the disease appropriately just does not exist at many regional hospitals, because the disease is so rare. 

If you are staged at IA to IIA, statistically there's a good chance that your disease will be managable, and that you will not progress.  I've been having periodic UVB for 10 years, at stage IA.

Regards - Mori

Hi All,

I am an Australian living in Germany and was diagnosed last week with CD4+ CTCL. I am having a full body CT scan next week and am hoping for the best.

The first lesion appeared about 5 years ago and now I have 4 siginificant lesions on my hips and legs. I have been given a steriod cream for now and will be ready for light therapy in 3 months or so due to other complications.

Any words of wisdom for me?

I am being treated at a University hospital near my house and have been assured I am in the best care.

Regards,

George

Hello George

Where in Oz are you from?  I'm in Perth, north of the river.

I am not a doctor, haemo-oncologist, or a dermatologist.  But I've had CTCL for a decade, and am in many respects typical, and, I have read a lot of medical literature.  I've had time to ruminate on this strange beast of a disease.

Getting staged is frightening, but absolutely necessary.

Glad to hear that you are having a whole body CT scan.  That's a good start.

Will your medical team be conducting a bone marrow biopsy?  If you have a CD 4+ diagnosis, they may have already done that.

The essence of my reply is about your 'lesions':

The lowest level of T-cell infiltration of the surface of the skin is the patch stage, a red rash that can wrinkle the skin.  My worst patches have been on my buttocks, saucer-sized and multi-coloured.

The next level is plaque stage, where the infiltration "builds-up" to an elevated "scab-like" lesion.  I haven't had plaques, so I can't adequately describe them.  From the photos I've seen, the plaque infiltration seems to be about 5mm or more in height.

The last level of T--cell infiltaration is the tumour stage, where rather elevated tumours can damge the skin to the point where you are vulnerable to sepsis.

My amatuer view is that if you only have patches, then you are typical, and UVB treatment is likely to clear your patches.

Since you have had some level of skin involvement for 5 years, without significant progression, you are likely to be ok George.

Regards - Mori

My daughters mycosis fungoides has definitely turned into a beast it's a very underrated cancer that is incurable and hard to treat my daughter is trying so hard to live with this cance

ncer and it has affected all of us as a family she has painful open lesions all over her body so far it hasn't spread to her insides but the constant itching she has is exhausting her on a daily basis as a mother of a person suffering fm mycosis fungoides my heart and hope for remission goes out to u all

Hi Islington

Sorry to hear that your daughter's mycosis fungoides has progressed.  Yes, it can become a beast if it progresses.

While all the treatment I need is UVB light, your daughter needs the very best experts in the UK.

Hello , sorry I am new to this 

my dad has just been diagnosed with this and it’s in stage  3/4 . He has a big probably 4 inches sore on the back of his neck which the dressing had to be changed everyday 

it has spread to many parts of his body but it contained to the skin , the one on his neck is so nasty and has made a hole , it is horrible and the doctors have never seen anything like it ! 

We are going to see a specialist Christmas Eve of all days , it’s happened so quick , started 10 months ago with a little sore and they thought it was done skin irritation, 

i keep looking things up but seem to be going round in circle , I’ve just lost my mum to a medical mix up and going through court 

Hi Mori,

Originally from Sydney (western suburbs). Married a German and with three kids in tow decided to give up the rat race and move to Germany. Small world... My brother is also a Perthling.

I was very suprised from my diagnosis and still have not been able to have a CT as the prescreening blood test showed a high Creatine level. Now I have to see a Nephrologist to add to the list.

No bone marrow biopsy was discussed or planned so I guess the doctor doesnt think it necessary as yet.

Thanks for your reply. It not only confirms my thoughts from the very little I have researched about this but it is always comforting too to hear other stories.

Take care,

George