Dressings

Hi Lorna Itsallbananas and welcome to this corner of the community but sorry to hear about your husbands MF diagnosis.

I was officially diagnosed with MF way back in 1999 but most likely had been living with it before then for a few years.

He has to be very carful using dressings as most sticky edges of dressings will rip his skin as MF makes the skin thin especially if he has been using any steroid creams.

I actually ended up with 2nd degree burns on my bum when I was having PUVA treatment (light treatment) so had to have this area dressed as well as other areas at times.

You may want to ask his Dermatologist, GP or go see your local pharmacy and ask about ALLEVYN Gentle Border Adhesive Foam Dressing as they were the only dressings that would not rip my skin and the foam centre protects open areas and stops seeping blood/puss.

I used to get boxes of 10no - 10cm x 10cm dressings on prescption and had at times to join 4 to make a large enough dressing 

Happy to chat at any time.

Many thanks Mike, 

I will speak to our local Pharmacist and see what they recommend but will ask about Allevyn as well.

My husband developed the disease aged 27 (2004) but wasn't diagnosed around 2007, as I'm sure you appreciate, it isn't an easy process of diagnosis. 

He has undergone quite a few treatments including the usual moisturisers, radiotherapy in Newastle, a few rounds of PUVA, steroid creams, tablets including Acetretin and is now trialling a cancer cream called Ledaga- have you experience with this? He is applying it on one large patch on his leg at the moment as a test site, early days as only in week 3.

I would say whenever he has had a PUVA or the 1 bout of radiotherapy, it does go away for a time but is coming back quicker each time and in different places.  Just now on his bum, thigh, ankles, wrists and at the belt area of your trousers.  

It is good to know of someone who also has experience in this cancer (although, I appreciate not good for you!) and I wish you well.  

Thanks, Lorna

Hi Lorna, Allevyn dressings are great but expensive and can be bought online but as I said I got them free on prescription 

I live in Inverness and I was sent down to Newcastle by my team in The Beatson in Glasgow to see Dr Frew as we were looking at Electron Bean Therapy…… this was after my first Allo (donor) Stem Cell Transplant (SCT) failed  but we agreed that I would be better having 30 radiotherapy zaps on all my tumours areas before I went on to have my second Allo SCT…… it’s a very long and complicated story but make a cup of strong coffee and hit the link at the bottom of my posts to see my full story.

I had UVB and PUVA, was on Acetretin for a good number of years, had every cream under the sun (not Ledaga)…… Interferon alfa (a) injected weekly subcutaneously under tumour areas and eventually my local health board agreed to pay for me to have Bexarotene at £80 per day!!….. I was in it for a few years it was great but it came with some complications and you will see from my story the rest is history.

At my worst I was 70% covered in surface tumours but I am over 7 years out from my second Allo SCT and my skin remains perfectly clean although I now have other health issues but still living as good a life that any 67 year old can be living.

Happy to chat, answers questions etc.

Thanks Mike, 

What a coincidence, we too are originally from Inverness.  Small world.

Appreciate your help, I'm sure we will speak again.

Lorna

Yes small world.