Hi Keith,

I think this treatment can be used in both the earlier and later stages of the disease. I have read that more recently dermatologists have found lower levels of radiation for shorter periods can be effective which means a patient can has it more times in a lifetime. There is a document produced by British Association of Dermatologists in 2018 on the management of primary cutaneous lymphomas (not the one for the public) you can google it though. It contains more information on all of the treatments but I can't say I understand all of it. My dermatologist is part of the group.

I start my treatment on Monday morning - 8 sessions over  two weeks and I am expecting some unpleasant symptoms for a month or two and hair loss but on a positive note it might buy me 12 - 18 months clear skin. I'll let you know if it works and if I think it's worth it. The thing I find most difficult to live with are rashes and plaques on my face and round my eyes so this is where I would really like to see an improvement.

Good to talk to other people and hear their experiences. Take care.

Enyaj

Thanks for quick reply. 

Yes....me too, much soreness around eyes, forehead and behind ears. Nothing seems to touch it. Trouble is most creams sweat into the eyes I find.

I'll check that doc out. 

Good luck.

Keith C. 

Hello and thanks for the information. As I'm newly diagnosed (but suffering for years ) the radiotherapy treatment is all new to me. I have read somewhere that radiotherapy is mainly used when tumors break out. Hopefully this will control the MF for a number of months at least. 

Hi enyaj 

Good luck with the start of the treatment next week. I think full body skin radiotherapy for me will begin in January depending on how it works out on my arm as I get the first zap tomorrow . I don't have any rash around the face or head but have two small tumors around my chin and now two starting to break out around each eyebrow. 

Most of my legs are covered by a brownish type rash and very dry this also extends up my back and around the waist to the stomach area. Tumors are also included in the rash some small  but a couple nearly as big as a five pence piece, the ones on the back of the legs hurt the most when sitting down or driving.

Other bits of this type of rash are dotted about the arms and shoulders but most of the tumors started to appear just after I had a biopsy , so instead of just usually having one or two I have now lost count. 

Please let us know how you get on next week. 

Good luck all. 

Hi Keith,

Your history is almost identical to mine - same timescale, same process, same body coverage, same diagnosis route, same treatments - except I didnt have the renal issues. I've just found some swollen lymph nodes for the first time and am awaiting a scan to see what's happening.  The only other thing that works well for me is Dermovate a steroid cream that you have to use sparingly but its very effective for me when the itch gets really sore.  I might use a big tube of it (100gm) in a month and can then go for a few months with just the emollient cream.  The consultant seems to think that this level of use of the steroid cream is OK.   Whenever I read some of the entries on this blog I think I'm really lucky that I'm not to badly off.  I really feel for some of the more severe and tragic cases.

Andy

Hello Folks

MF is exquisitely radiosensitive, and the website of the Cutaneous Lymphoma Foundation (United States) has a page about radiotherapy, and TSEB - Total Skin Electron Beam Therapy.

www.clfoundation.org/radiation-therapy-local-and-tseb

Regards - Mori

Good morning Mori

Thanks for the link it's very encouraging to read how successful this treatment is for sufferers of MF. I look forward to the outcome of my treatment and will definitely be checking out this forum on a daily basis.

Hi Andy,

Yes - it looks like we are very similar. My renal issue occured long before MF and is not connnected. Although in the latter stages of my renal  treatment I had to take an oral chemo drug of which a side effect was an increase in the risk of skin melanoma. For a while I was convinced this led to my MF but I dont think that now,  I feel very lucky not to have the swollen lymph nodes or itching (yet...) and hope this can be managed effectively for you.

I also use Dermovate  - I find a two day treatment on any given area seems enough to clear it up for a few weeks,  I have just started trying CPD Muscle Rub (yes Cannabidiol  Muscle Rub!) around my eyes and face. I've had some promising results but it is far too early to tell if this is giving any real relief as I find my MF goes through good and bad periods.  But - hey, I'll try anything!

Good luck.

Keith

I can confirm that cutunous t cell lymphoma is not to be sneezed at I lost my finger to it and my thumb is seriously damaged.its only recently been diagnosed originally it was (mis) diagnosed as ezecma then psoriasis and when the lesion started destroying my finger orf a rare,in humans, disease of sheep and goats unfortunately it was something far more sinister than any of these.i haven't been staged yet but I've had a CT scan and my internal organs  seem uncompromised.i also had a lesion form on the palm of my hand.i can't fault the doctors (I live in Oxford, England) they identified it fairly quickly, about 9 months, after it destroyed my finger which was amputated.i don't know how deadly it is as very sites say different things but remember most people don't actually die from the disease they have but from secondary infections so I'm guessing it is pretty deadly certainly in it's upper stages.they cause is unknown but one thing at the back of my mind is in 1986 I was in North East England,where I was born, and we had the cloud from Chernobyl come over us carrying fissile uranium 238(might be an isotope out there!), I suppose better than plutonium but only just!!

Hello Canopus7  - you've been through a rough patch for sure!

Staging involves (where I live anyway) a CT scan (which you've had), a bone marrow biopsy , blood samples, and, perhaps spittle being provided for genetic sequencing, and sometimes a PET scan.

i encourage you to push for an answer - what stage are you at?

You made a really good and important point in your post - 'every site says different things'.

I was freaked out for about 2 years, because good medical advice on this rare disease is really difficult to obtain.  This is a reason why you need to seek out the UK's 3 hospital centres of excellence.  There's one is London, South Hampton and Edinborough.   

it took me 2 years of reading medical articles to get "framework of understanding" of this rare and weird "science fiction cancer".

The essence of Mycosis Fungoides is that about 88% of people that are diagnosed with it usually have an indolent condition.  It's a cancer, but it doesn't kill you.  You die with it, but not because of it.

however, it can be disfiguring, and acquired hospital infections can finish you off.

The poor 12%, who have an aggressive form of the disease, need super specialist help at centres of excellence, where there are radiologists, haemo-oncologists, dermatologists, and super specialised nursing staff.

It can take years to be properly diagnosed, and I am saddened to hear that you lost a finger and almost a thumb.  If you see similar skin tumours, please be pushy and insist upon spot radiotherapy.  Mycosis Fungoides is very radio sensitive, and spot radiation could have removed the tumours that caused you to lose a finger.