Hi Jay,

I know it is easy to say but do try not to worry.  In the majority of cases this illness progresses very very slowly.  You may never have tumours.  For many of us it will be patches and rashes and itching for the rest of our lives. I don't know how quickly tumours appear, I have never had one.  

I feel desperately sad and sorry for the small number of people for whom this disease turns nasty, a couple of very sad cases are talked about in this chat, but they really are a small minority.

With regard to referral, the dermatologist at my local hospital suggested it to me, because she knew of the London centre and personally knew the professor who runs the unit.  She wrote to him and asked him to see me.  If your dermatologist does not know of it you may need to raise it with him/her and ask to be referred.

Stay happy and live a normal life.

Andy

Hi Andy

Can’t thank you enough for your reassuring words and advice. It’s comforting to talk to people who are in this situation and bleeds me to know others are in far more serious condition, my heart goes out to them. 

Thank you Andy for your advice, I shall bring that up with my consultant next week.

Kind Regards 

jay

Hi Andy

just a quick one, how often am I to moisture my skin and what kind of moisturiser should I be using in your experience?

at the moment I moisture my skin (I use cetreben ointment) every time I come out of shower which is once or twice a day.

kind Regards 

jay

Hi Mori

Thanks for your reply. Andy pretty much put at ease with his words. As it has only been couple days that I have been diagnosed with this disease I’m still trying to come to terms with it and have so many questions going through my head. Andy has been able to eliminate a lot of those questions which I am very grateful. 

As you and Andy have said that this disease in 85% of people doesn’t progress but is it normal to have new patches/plaques as days go by without treatment? Cause I am still waiting for on what treatment my Dermatology consultant will prescribe.

i really hope you and Andy don’t mind that I am asking many questions?

kind Regards 

jay

Hi Jay,

There seem to be variations of symptoms for all of us at the lower levels.  Yours may be quite normal but you will have to wait and see what your consultant says.  I have a constantly itchy red rash over my back, front , arms and thighs and a small number of plaques. The moisturiser I use is called Zerobase and I have persuaded my GP to prescribe it for me, but you can buy it online or at the pharmacist.  I use it every morning after a shower and often again later in the day if I am itchy. When I first went to the London centre of excellence the specialist nurse gave me a lot of free samples of different moisturisers to try and I found zerobase as good as any.

One thing about showering is that some commercial shower gels contain perfumes that will iritate sensitive skin so it is a good idea to use something like Dermol lotion to wash with in the shower.

I don't mind you asking at all.

Andy

Hi Andy

Thanks for all the advice and I shall put it into practice. Much appreciated Andy

Kind Regards 

jay

Hi Andy 

So as you know my biopsy came back as mycosis fungoides like couple of ago. Now what they have done is sent a sample of the biopsy to a specialist Doctor in London as it’s procedure. 

Now the NHS dermatologist is waiting for the report from the specialist in London. Its been nearly a month now and still no report from the specialist. Does it take that long for reports to come back? NHS dermatologist can’t do or start the treat without the report from the specialist Doctor in London.

Is there anything I can do to fast track it? Cause I’ve been sending emails after emails regarding the report but they keep saying still waiting and will let me know when the recieve the report.

kind Regards 

Jay

Sorry Jay, I can't help with this as I didn't experience anything like this.  My local NHS dermatologist made the diagnosis  and then suggested that I should go to the specialist centre in London. She wrote to them and I received an appointment fairly soon after.  I went down and they took their own (much larger) biopsy and blood test to confirm the diagnosis.  

I've discovered since how lucky I was because my local dermatologist apparently worked at the specialist centre early in her career and so was familiar with MF and knew the people personally at the specialist centre.

The only advice I can give you is that you need to talk it through with the local dermatologist.  

Hope this helps,

Andy

Hi Andy

I just got the report back from the specialist hospital and I think my dermatologist has got the report as well. Now in the report specialist doctor wants to do a test to confirm if there are any presence of T-Cell Clones, don’t know what that means ( but if you do Andy I will appreciate if you can explain to me) but will find out on my next appointment with the dermatologist which is on the 24 October.

I have been told that all the tests and treatment (at the beginning) will be done in London which specialises in CTCL. At least the ball is rolling now which is a relief and I can now get the treatment started as soon as.

Thanks for replying Andy and I appreciate any insight you have regarding the treatment process.

Kind Regards 

Jay