Nhl fungoids mycosis

Hi NHL me and a warm welcome to this corner of the Community although I am sorry to see you joining us.

I am Mike and I help out around our various Lymphoma groups.

I was also diagnosed with Mycosis Fungoides (MF).... way back in 1999 at the age of 43.

MF is a type of Low-grade non-Hodgkin lymphoma fitting into the specific small group of Skin Cutaneous T-Cell Lymphomas.

MF is rare with only about 7 in a million people in the UK is diagnosed every year with MF........ but although MF is rare and incurable..... it is very treatable and people live all their lives "with' their MF

i eventually reaching Stage 4a in late 2013..... but this was more to do with me unfortunately developing a different more aggressive type of Peripheral T-Cell Lymphoma...... but my last treatment was back in Oct 2015 and 8.5 years on I remain in remission to this day, turned 68 last Nov and living a great life.

You will see from my story that I have had a total of 45 sessions of radiotherapy and honestly these were on the whole not a problem, not painful with little of no side-effects..... and most certainly did the job.

We do actually have a dedicated T-Cell Lymphoma support group.... follow the following link T-cell lymphomas and have a look around.

Always around to help out or answer questions,

Hi Mike,  my name is also Mike, and we are both 68. I have read your life story and it has brought me to tears of sadness and joy. You are one of the bravest and most determined of people to live your life to the full. Thank you, I was beginning to think it was only me that had this cancer. I have not had any real advise or help up until now. I am in having radio therapy in a couple of days but have not even seen a haematologist yet.I was told over the phone that I  had cancer. My tumour was cut into by an a@e doctor who thought it was an absuss, it then grew quickly over the next 3 weeks. The pain at dressing changes was awful. 30 minutes after one of the dressing changes I had a heart attack. Into hospital for 2 weeks, 3 more heart attacks,  then they finally did a biopsy on the tumour. Five weeks later they ring meto tell me I  have cancer. My file had been mislaid. So that's my story till now.My tumour is very large, bleeding and painful. I just hope the radio therapy works. I will be positive just like you Mike. Thank you

Hi Mike….. sorry to hear about your journey to diagnosis and about your heart attacks.

Not many consults will have any idea about MF…….. it took me 16 years to actually sit with someone and talk with about MF……. I have now talked with a good number of folks in this group but also on the various Lymphoma Action….. (Lymphoma Action is the only UK Lymphoma Specific Charity who have lots of good reliable information, videos..... basically all things Lymphoma....... pre, during and post treatment)….. Support Platforms.

It took 14 years before I needed to see an Oncologist then a Heamatologist……. as my Dermatologist had treated NF before and was able to control it until the ‘other’ type of T-Cell came along.

As I said in my profile, I had a tennis ball sized tumour grow rather quickly over my right eye and it had attached on to my eye lid closing my eye. I was told it was 50/50 that my right eye could be damaged but I did the 'Man in the Lead Mask" thing, had 5 sessions of Radiotherapy and bang it was gone in 5 weeks leaving a little indentation on my forehead….. and I have no lasting issues….. although this was the start of the other part of the journey.

What hospital are you being treated at?

Hi Mike, thanks for the reply, I am going to be treated at Singleton hospital in Swansea on Tuesday.  I really hope that like you it works well. My wife has been wonderful through all of this but is really struggling now. Do you think a call to macmillan will help? 

Hi again Mike…… I actually recommend that she and indeed yourself look to go into the Swansea Maggie's Centre as these folks are amazing and support all the family.

If she wants to call someone and talk she should call the Lymphoma Action helpline on 0808 808 5555 where you can talk with someone and get support - open every week day from 10 till 3.

Lymphoma Action also have a great Buddy Service where you and/or your wife can be linked up with someone who has walked the journey……. most likely me for an MF patient and a caregiver for your wife.

Thank you Mike, We will go to Maggies before my treatment. Coming on this forum has really helped me

I am also a T-Cell Lymphoma survivor. I have not had a cutaneous Lymphoma, but have had two systemic T-Cell varieties (PTCL-NOS and AITL). A little older, but after 16 years of therapy, still delighted to be anywhere at all.

Good morning Mike.... do get back to us once you have been to the Hospital and Maggie's

Hi, thank you for answering,  I  have just looked at angio blastic. What amazing people you all are on this forum. I don't feel alone any more. I am in a lot of pain, how do you cope? Can I  ask what you take? Thanks Mike 

Hi again Mike NHL me ..... I was in a lot of pain and until the treatments did 'their thing' I had to rely on taking some very strong pain meds.