Mycosis Fungoides

Hello, I'm in my 5th year of MF and thought I would share my experiences with you so that existing and newcomers to this disease may find my information helpful.

I am 64.

There seems to be few resources in the UK where people chat about MF.  Looking through the chat room here at Cancer Research I see relatively few posts and mostly quite dated. I guess that is because MF is not so common and in many cases people can live with MF reasonably well and with few if any changes to lifestyle.

My MF was clinically diagnosed as repeat biopsies were inconclusive. I'm told this is not unusual.  I have had 4 sessions of PUVA treatment which, at the time, I respond well to but MF reappears after about 6 months. Again I am told that this is to be expected.

In between PUVA I use Aveno Lotion as a daily moisturiser. I find this works well for me, is easy to apply and I get it on prescription without any problem.  My consultant would prefer me to use a thicker moisturiser but I find this harder to apply and more damaging to clothes and I don’t really see any improvement over Aveno so I am sticking with that for now.

I find that my MF is very cyclic in its severity. About once a week I will find my skin very blotchy (sometime with raised areas), on these occasions I stop Aveno and apply Dermovate. Normally one or two sessions of Dermovate (that is one application per day for two days) is all that is needed before I can resume my Aveno.

I always apply Vaseline to my face (around my eyes), behind the ear and to my genitalia and groin. This works very well as I was getting soreness in these areas but the Vaseline has cured this completely for now.

Sometimes, I would say around once a fortnight, I get very sore around the torso after applying the Aveno – it feels like needles attacking the skin but it passes after a few minutes.

Less often, say once per month, I get crazy itchy!  Especially my back!

In summary I feel lucky that my experiences so far with MF have been easy to manage and I can lead a completely normal life. I see my consultant every 6 months to keep an eye on the situation. I suppose I would say that my MF is slowly worsening, I feel the points I raise above were occurring less often a year ago. I declined an offer of another session of PUVA on the basis that my total times in the light room are nearing the lifetime limit for me so I plan to keep this available for the future should things get much worse than they are.

That’s me!  I hope you find this useful and I’d be pleased to answer any questions about my experiences to date.

  • Hi KeithC,

    Welcome to Cancer Chat. I just wanted to say thank you for posting such an informative post. I'm sure this will be a helpful resource for others with similar experiences on this forum, and it's great that you are here with us to offer support to others and to answer any questions.

    I'm sure other users will be along with further comments should they be looking for useful information on this topic. Meanwile, do feel free to browse our forum if you'd like to speak to anyone else going through anything similar in any of the other threads.

    Wishing you the best.

    Ben

    Cancer Chat Moderator

  • I know that your post is a bit old but what stage of mycosis fungoides are you i?sounds from what you are saying stages 1a or b?I must have passed through those stages thinking that I had ezecma and then psoriasis only to arrive at the tumour forming stage 2b where it was diagnosed as mycosis fungoides on the 6th of December 2019(nice Christmas present!)when tumours began forming and I had to have a finger amputated.of the steroid creams I find Dermovate heals up damage as does betnavate but has no long term effect.eumovate reduces the scabing on the plaques.hydrocortisone has no effect at all.with puva it had no effect at all and I'd had it twice a week for 13 weeks before coronavirus put a stop to my hospital visits.i was meant to be put on a powerful anti cutaneous t cell lymphoma drug called Targretin early this month but coronavirus got in the way.my mycosis fungoides went from being an unpleasant problem to a life threatening illness in about 14 years but obviously other people will hopefully fair better?the 2b tumours are very dangerous and life changing.

  • Hi Canopus7!

    Thanks for your message. I am sorry to hear that your MF is significantly furtther advanced than my own, I hope that the Targretin gives relief to your symptoms when you are able to access the drug.  Shortly after my first post on this thread a moderator directed me to another thread which I provide below. This thread is much more active among the participants and I hope that you may find further advice and similar experiences there.

    For my part I had a bad end to 2019 in terms of myt MF. My skin condition detriorated significantly but another round of PUVA woked its magic. I think I am very fortunate to respond so well to this form of treatment.

    The thread details are...

    www.cancerresearchuk.org/.../mycosis-fungoides-skin-lymphoma

     

    KeithC

  • Sorry to hear that it has gotten worse.mycosis fungoides is a nasty ailment for sure and I wish I'd never heard of it or cutaneous t cell lymphoma!which I hadn't prior to December obviously I'd heard of lymphoma and as soon as the doctor mentioned that word off went the alarm bells but I didn't know about all the subtypes of lymphoma, unfortunately I do now!