Hi Andy

Its good to know you and the family are safe and well.

I got a letter to shield myself for 12 weeks even though the Hospital said that I am not in the high risk category. 

jay

Hi all,

I received a letter too and I am shielding within the house separate from my husband and son. This could last until there is a vaccine potentially a year or more so my husband might decide to shield with me. This has wider implications for him not seeing his first grandchild born in April, potentially missing his son's wedding in a few months etc.  It is therefore important to know if we are really at high risk or not. I am generally quite fit and healthy, manage to shake off colds in the early stages, never get flu and don't have the flu jab. My skin is currently clear after having total skin electron beam treatment in December and my hair has started growing back.  Is any of this relevant or not to being safe from Coronavirus or is it more complicated?  It would be really useful if there was more specific guidance to our condition. It is interesting that people are getting conflicting advice from their consultants.

For now I am playing safe but keeping an open mind. Best wishes everyone in whatever circumstances you find yourselves.

Jayne

Hi Jayne 

what I was told by my allocated nurse at the hospital is that MF patients are not going through any sort of chemotherapy, Radiotherapy or taking immunosuppressive drugs are not in high risk category. It's only the patients that are going through chemotherapy, Radiotherapy or taking immunosuppressive drugs are at high risk. 
 

Saying that I still got a letter from my GP telling me to go into shielding for 12 weeks.

keep safe and well!!

jay

Thanks Jay,

My radiotherapy was 5 months ago so I wouldn't' think that it is relevant now. I'll ask the hospital. Out of interest are you following advice from the hospital or from your GP?

Jayne

Hi Jayne

Im following what it states on the NHS letter which was sent from my GP. This allows me to be off work for 12 weeks and also keep myself safe.

i will go by what it states on the letter Jayne as you had radiotherapy just to be on the safe side. 
 

out of interest Jayne how was your radiotherapy treatment?

jay

Hi Jay,

The radiotherapy was for 4 sessions a week for 3 weeks, this involved getting up really early to allow 1 - 2 hours to get to the hospital for 9 am on a busy motorway (made it a bit more stressful) but my husband drove me most days, once I stopped overnight in a hotel after an afternoon session.

The health team were wonderful and the treatment not too bad. It involved standing still in different positions for a couple of minutes at a time whilst I had beams of radiation. I had to wear lead goggles and lead covering my toes. I do yoga regularly and I'm sure this helped hold the positions. I had to have my eyes done separately 3 times each eye but never two eyes in a day as I had to wear an eye patch for an hour afterwards only because my eye had been numbed and I wouldn't be able to feel if something went in it. The actual eye treatment sounds awful as they put a solid concave lens to protect your eye before the radiation blast but to be honest it was quiet bearable. Finally I had my 'underside'  treated (no idea why as no rash there) always a little more embarrassing but still ok. I did find it a bit overwhelming on one day towards the end when I had all three treatments and hours of waiting as there was some equipment problems.

The after effects came a few days later, my skin got redder, sorer, weeped and peeled. I looked like something out of a zombie film for about 10 days over Xmas but it was amazing how quickly I healed and new clear skin developed. ' Soft as a baby's bottom!' Also about 10 days after treatment stopped I lost my hair and it took three months before signs of it growing back. 

Currently my skin is still clear and I am hoping it will last for at least 12 months in which case I'd say it was worth it. I'll keep you informed.

I hope I haven't bored you. Take care.

Jayne

Hi Jayne

thank you for sharing your experience and it's good to know the treatment has made a difference to your skin.  It seems like quite a extensive treatment and I have great admiration for you and anyone who has gone through it.

keep safe and well Jayne

jay

Hello Enyaj

it sounds like you've had Total Skin Electron Beam Treatment (or whatever the medical name is).

Radiotherapy can work really well with Mycosis Fungoides.

Mutated skin resident T-Cells are aparently 'excusitely radio-sensitive'.

If I progress to the tumour stage, IIB, I'll be asking for that.

Have they staged you?

regards - Mori

Hi Mori,

Yes it was Total Skin Electron Beam treatment, they now do it for shorter periods (12 sessions) which I think means you can have it more than once may be with a good time lapse between.

I have been staged as IIA - no tumours but a lot of patches/plaques quite bad on my face and some minor lymph node involvement. I hope that it doesn't progress to tumours but if it does then I suppose I'll cope with it the best that I can.

Best wishes from the UK

Jayne