Hi Morsekey

I'm sorry to hear that you're at Stage III, but I'm pleased that no internal organs are involved.

Don't give up hope though, because some treatments can offer a dramtic improvement.  For example a fellow I know had tumours on his face at stage IIB, and interferon injections eliminated the tumours completely.

It sounds like you are being treated at a centre of excellence - which is exactly what you need right now. 

Regards - Mori

Hi Morsekey,

My thoughts echo Mori's. Such a long wait to see the dermatologist though is awful, I only waited a couple of months in 2018. I have stage IIa MF and awaiting total skin electron beam treatment next month.

I hope that you get the support you need. It helps to speak with people who have experienced similar symptoms and treatments and there doesn't seem to be many given how rare the illness is. I received useful information from 'the Highlander' who had advanced stages of MF from the Macmillan website - if you search T cell lymphomas on the online community - he has massive experience on symptoms and successful treatments over the years. Also, if you haven't found it the already, the clfoundation.org website is a good place to find out reliable information, although a US charity.

Good luck with further results and the chemotherapy.

Regards

J

Unfortunately my dad has not been about to beat this terrible disease, he is in hospital where they are going to try and keep the pain down, once they have achieved this he will come home and me and my husband will care for him he went down hill so quickly 

Thank you both Mori and enyaj for the help/advice. Appointments so far have been with my local city hospital however the doctor dealing with my case at this hospital did say he was in contact with a specialist unit that has experience with MF in London. 

Going through all the questions in my head,why me etc etc. Life has just turned upside down but I'm sure I will learn to deal with it. 

Thanks again and I wish you well. 

I am very sorry to hear your father is still poorly with this disease.

I wish you and your family every strength to be strong for him.

Regards,

George

Hello i just wanted to update my journey along the MF route. I have now been advised that i will be starting radiotherapy next week on a single tumor first as its larger than the rest before full body radiotherapy begins . At least now i hope this will bring some relief to the nightmare i find myself in.Both my petct scan and bone marrow have returned as clear.

Hi enyaj 

Thanks for the reply.Yes it is the same treatment and was also in the mould room to have protective goggles made of lead as its total body radiotherapy . I also got a couple of booklets to read over and photos of the standing stances that are required to get all over treatment. Looking forward to starting as i really need it. Good luck and take care.

Keep us posted :-)_

Hi Mori,

I've posted a couple of times about my MF but obvioulsy not in the right place as I've had no replies other than from moderators - the last one pointed me towards yourself and  this forum!  Hooray!

I've had MF for about 6 years. Numerous biopsies failed to reveal MF - I was eventually diagnosed after a clinical review by the group of dermatology conasultants at my local hospital. I am fortunate in that I was advised to see a dermatologist by my  renal consultant very early on so the condition was being monitored from the outset. (renal condition now fixed).

It gets a little bit worse every month - now I am pretty much covered head to toe with redness and rashes. I respond very quickly to PUVA though I'm around the 150 visits to the light box and  believe you are lifetime limited to about 220 I think.  Oroginally I used Aveno but that doesnt touch it now. So I use Hydromol which I think is excellent, and grease up twice per day. Also oat baths are very soothing.

I don't have any tumors or lumps or bumps but I do keep a look out for them. I am pretty anxious that my MF doesn't appear to be in the background - I feel certain it is worsening albeit slowly.

Recently I've had bloodtests on liver function and I'm due an ultrasound on my liver very soon. I think my consultant is lining me up for Methatrexate....

Have you seen this...https://www.cancerresearchuk.org/about-us/cancer-news/news-report/2019-03-22-targeted-lymphoma-drug-gets-green-light-for-nhs-in-england?_ga=2.90595546.1306415813.1574852342-476383941.1574852342

Keith C

Hi Enyaj and Morsekey..

I'm 6 years in with my MF.  So far treatments limited to PUVA bath/light.

Re the total body radio therapy - I've not heard of this being used to treat MF before. I wish you both well during the treatment and hope you have positive results. . Are you at a certain stage of MF where this is recommended...? I am not as well read as many on this forum but I thought I would have come across it by now.

Keith C