Mycosis Fungoides - Skin Lymphoma

Hi folks

Diagnosed with a rare lymphoma.  

The doctors haven't communicated clearly - perhaps because it is rare.

Consequently there's nobody to talk to.

it's not agressive, just yet.  It might turn nasty.  I just don't know.

it's a bit of a "science fiction" cancer - a blood and immune system cancer that manifests itself on the the skin.

It's low grade at the moment.   Just stage 1A.  Nothing to complain about.

A reminder of the inevitable I suppose.

Meh.

 

 

 

 

 

 

  • Chaos across Europe as the coronavirus spreads like wildfire.i live in England so targretin would be free on the NHS (well free on the surface but obviously you pay via a tax called national insurance).all of the hospitals seem to shutting their doors for non accident and emergency cases plus my local doctor has texted me under no circumstances go there ring or email only.i have had to decamp from Oxford to the far north of England due to family who would be stuck here and unable to get to the shops.goverment advice is to stay 2 metres away from other people not easy in crowded shops.

  • By the way, the reason that Italy has such a high death rate from Covid 19 is that it has a very aged population compared to most other countries, whereas South Korea has a fairly young aged population so its to be expected that Italy will have a relatively high death rate compared to South Korea.  The UK is somewhere between these two countries so we can expect a death rate somewhere in between.

    Andy

     

  • Time will tell!I can't believe how the pub's,etc, across England are still open simple commonsense would have said shut all non essential meeting places where people are crowded close up.considering how Boris claims to be something of a historian he doesn't seem to have read much about how the Spanish flu of 1918 spread like wildfire.... close human interaction.the only drug that might semi work against corvid-19 is Tamiflu an antiviral but some are doubtful that it's any good but I reckon better than nothing at all?

  • The answer would seem to be in on mycosis fungoides and other ctcl's and corvid-19.the government advice is for anyone undergoing treatment for leukemia or lymphoma to self isolate for 12 weeks.

  • Hi All,

    I have received one of the NHS texts today saying that I am in the extremely high risk category from corona virus and so have to go into the extreme version of lock down. Absolutely no going out for any reason for 12 weeks. Anybody else had one?

  • Not yet.ive been out today for a walk but it looks like we're all going to be locked in.

  • Hi Andy,

    I received the NHS text yesterday too and have taken the action to self isolate from my family within my household to be on the safe side. Have you made any changes?

    Jayne

  • Hi Jayne, 

    My wife and I were already isolating because we are over 70, but because I'm physically the more fit one I'd been out a couple of times to get shopping.  That will stop now, we won't be going out at all except into our garden. We will have to depend more on one of our sons who lives 10 miles away.

    Andy 

  • Nothing yet, I'm just waiting to see. I'm in Scotland, so not sure if NHS Scotland are communicating via traditional mail or text. I've only ever had 1 course of light treatment, my main treatment is emollient and steroid ointment. 

    I'm a key worker, in food delivery at the moment, so hoping to be OK, but obviously will isolate if advised to. So difficult to know what to do, especially as the wife has a distant history of asthma...

  • Hi! Been a very long time since I've given an update, so on March 7th I had another biopsy, this time they took it from my scalp and my arm..  I spoke to the doctor about mycosis fungoides and he included it in the biopsy to look out for. I'm just waiting for the results, also quite upset because my skin is peeling on my scalp without me even touching it and it tends to bleed and burn.. I'm going to call the doctors tomorrow to let them know but my hair loss is not slowing down either :(