Hi everyone,

New here and I'm not really sure how this works! But I'm posting on behalf of my mum, she's currently being treated with radiotherapy for her Mycosis Fungoides which has consumed her whole body! Treatment is on hold at the moment as she's currently fighting the coronavirus and sepsis but hopefully will be able to finish her planned sessions of radiotherapy soon! 
I'm just posting to work out how this works really.. because it think having others to talk to about living with this cancer, once she is well enough to do so, will really help her! So just wanted to check in how it all works so that I can set her up on here when she's finished her treatment! 
Also though, while I am here, has anyone else had full body radiotherapy? She's having it, head to toe, and I was wondering how long a time frame we're looking at until her skin becomes less irritated and more comfortable? 
Thank you for reading - just trying to support her in any way I can! 
Kaitlyn. 

Hi Kaitlyn,

i expect you will get a few answers, so welcome to this chat space.  I'm sorry to hear about your Mum she does seem to have a bagful of problems at the moment and I bet you are worried.  It would help us to know more about your mums condition if I can ask a few questions so here goes.   Has your mums MF been graded yet?  Are you being seen at one of the very few specialist centre Stage? When you say it has consumed her whole body do you mean that her skin is red and very itchy all over or has she got tumours too?  What form of therapy is she having? The common one for MF is ultra violet light, but there is also electron beam therapy.  

As far as some help goes, MF is very rare and for about 85% of people who get it, it never progresses beyond the red very itchy skin stage - that's where I am and have been for 7 years now. Quite a few people on this site are very sadly in the 15%.  It's important to use bucket loads of moisturiser all over at least once a day but more if very itchy. my doctor prescribes Zerobase for me, but there is diprobase, cetroban and many more.  It's also worth looking on line for the cutaneous lymphoma society website - it's very helpful.

I will stop now because that's probably enough to start with but keep posting how your mum is doing.

Andy

Sorry Kaitlyn it's called the cutaneous lymphoma foundation , not society my mistake.

Andy

Hi Kaitlyn,

Sorry to hear about your mother. Its great that she is getting the support needed from you regarding her MF, Covid-19 and Sepsis.

Im assuming the sepsis was caused by the virus? Or was there some other reason for this?

One bit of advice I would give your mum is that when having any kind of therapy, it is very important to stay healthy. The therapies given for MF can lower the immune system which can leave one at risk of complications. This happened to me and I deveoped Endocartitis; an infection of the inner lining of the heart, which lead to sepsis and having open heart surgery to implant a new heart valve.

As Andy has said it is important to get a stage of MF from the specialists which means she can get the right advice and treatment.

Take care and be strong.

George 

Hi Kaitlyn,

I had radiotherapy head to toe in December but it was Total Skin Electron Beam treatment directed to my skin only. I do not have tumours and have never had sepis. You will see I posted something about three days ago which describes the treatment I had and the healing process. I'm not sure if this is the same as your mother.

My very best wishes to you all and I hope her health improves soon.

Jayne

Hi all, thank you for getting back to me! Her MF is currently ungraded and the stage is still to be determined. I’m assuming this is because it all happened so quickly. For years it has been passed off as eczema and it’s only in the recent few months where she’s been unable to work that she was referred to a specialist  - which is where she is now being treated! From then she was admitted on the same day and began radiotherapy but after a few sessions, was sent home to isolate with coronavirus symptoms. When confirmed positive, they also found staphylococcus bacteria in her blood - which caused the sepsis. They believe this got into her blood through her wounds, which are very big and deep. 

When I say it’s consumed her whole body, I mean she is very itchy and sore, as far as we’re aware there are no tumours but she is scheduled for a PET scan to check things internally. 

She has been using cetraben, gallons and gallons of it! Also recently using a Prontosan Wound Gel in her wounds to help heal them. 

And yes Jayne I did read your post, one of the first I read before I posted myself and you sound very similar to my mum. She is also being treated by Total Skin Electron Beam therapy, wearing lead goggles! She has lost her hair now, in the past 2 weeks. 

Did any of you suffer with wetness? We change her sheets regularly as them quickly become sodden! She’s also always very cold, probably not helped by being damp. Did any of you experience this?

Look forward to hearing more from you, also look forward to getting her set up on this. As much as we try to be there for her I think talking to people going through the same thing will help! 

Many thanks, 

Kaitlyn.

Hi Kaitlyn,

I didn't suffer to such an extent with 'wetness' as you describe, some night sweats and I do think controlling body temperature is one of the side effects of TSEB treatment. It may also be to do with fighting the infections. Someone else may have a clearer idea.

I look forward to hearing from you Mum on here when she is better. 
 

Jayne

Hi Kaitlyn, 

Yes, sweating is a problem I have too.  Slightest exertion and I'm dripping.  Unfortunately sweat also makes the itching worse so it's a bit of a vicious circle.  Lots of showers and more moisturiser help.  I'm sure your mum will know more after the PET scan . I guess that at the moment getting over Covid-19 and sepsis are most important. 

Good luck and lots of sympathy for you and your mum. 

Andy

I think that sepsis and septicemia (the two are different illnesses)can get into the cracks in the skin caused by the mycosis fungoides.i lost my finger to a mycosis fungoides tumour and nearly whole left hand but they never found any infection in it and I think,with hindsight, that it was just the mycosis fungoides tumours(about 4 of them) heading to the bone under them and I dread to think about what would have happened if it had gotten into the bone.regarding the coronavirus I am on the 'at risk list'but again conflicting advice from various doctors if I should go out or not so I use common sense and go out but stay away from other people and shops.if out try and stay upwind of people as they shout at each other, children and dogs just to ensure that their vapours carry the maximum distance! probably going to be a new spike in cases in England now hordes of people are out and about yelling and screaming around the sea side resorts,I live in a sea side village so I see them in action!