I wonder if anyone has undergone Total Electron Beam Radiation therapy?It is where the whole body undergoes radiation,as opposed to localised radiation, and is used as a treatment for skin lymphomas like; Mycosis Fungoides,Sezery Syndrome (some debate if MF and SS are different malignancies as aspects of one),PCTCL NOS and other even rarer ones.It is pretty intensive, 4 days a week for 5 weeks.I have been offered this or local radiation and they said to think about it so I said I’d let them know after Easter.I have had local radiation treatments before but never TEBR.It,as I see it,has the advantage of doing the whole body but, like the local radiation, isn’t going to solve the problem long term as the Mycosis Fungoides cells will just self replicate so about a year later back to were you where.I also, possibly illogically, that if you cut off their skin homing route they might home in on the internal organs instead! Although obviously it may not work like that.Mind they do that anyhow at stage 4 home in on the internal organs.
Oh @Kevan7 no I haven’t but you have time to write down all your fears and questions for whoever you are going to speak to after Easter.
Hopefully someone will have had some experiences that can help you more than me.
I always think the unknown is so scary and obviously you want to feel you are making the best decisions for you and your body.
Please let us know how you get on
Look after yourself
Hi @Kevan7. It must me a hard decision to to have to make. Do you have a good team who are advising you on what they think is best? I wait to see if others are able to share their experiences.
Not really too much advice as Mycosis Fungoides is very rare so you are not likely to encounter anyone else with it although by a really strange coincidence my sister had a friend who lived near Houston, Texas who died from stage 4a Mycosis Fungoides last year(I’m stage 2b).A small world given an incidence of 6 people in a million.
Wow, a very small world!
Hi @Kevan7 when I was diagnosed with Chronic lymphocytic leukaemia (CLL) 18yrs ago just before Christmas and I told a acquaintance/friend in Los Angeles in her Christmas Card.
Our Christmas cards crossed over the Atlantic and when I received her card she had also just been diagnosed with Chronic lymphocytic leukaemia (CLL).
I was put on watch and wait, but she had treatment straight away and she has been in remission ever since. The USA often seem to treat sooner than we do in the UK.
It brought us closer together.
I don’t know about the USA treating quicker as it depends on how much money you have!I dread to think what happens to poor people with cancer and other serious ailments there?I was on a drug called Targretin which is only really used to treat Mycosis Fungoides and other Cutaneous T Cell Lymphomas so as there’s not much of a market for it it’s really pricey in American terms about $2000 for a tub of the pills and Americans have to negotiate with their medical insurance, assuming they have it,to get Targretin and some won’t agree to it.I got mine for free,well sort of for free as obviously I’d payed for it in tax and National Insurance which I suppose is a form of tax, from the NHS and it didn’t work and I felt guilty throwing the pills I had left away.I was also reading that California has a slow rate at treatments for Melanoma so if you have a rapidly advancing one,say around stage 3 by the time the hospital see you it’s reached stage 4 and you stand a fair chance of expiring from it.