Feeling guilty mycosis fungoides

Good morning  Cartwheel and a warm welcome to this little corner of the Community although I am sorry to see you joining us and to hear about your Mycosis Fungodes (MF) diagnosis…… welcome to a small elite, special group of people.

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

Cartwheel said:

I feel like I'm doing myself an injustice.

I agree, you are going yourself a rathe big injustice…..

So to set the scene and for some context I was diagnosed way back in 1999 at 43 with the rare (8 in a million) incurable but treatable Mycosis Fungodes a l type of Cutaneous T-Cell NHL (a slow growing Low-grade non-Hodgkin lymphoma) …….

I eventually reached Stage 4a in late 2013 when a second, different, also rare (4 in a million) type of aggressive Peripheral T-Cell - Not Otherwise Specified NHL (a type of fast growing High-grade non-Hodgkin lymphoma) was then presenting so although my journey is slightly different I most definitely appreciate the challenges of this journey rather well.

In the early days it is initially had to explain MF…….

My great CNS (Cancer Specialist Nurse) told me the best health pigeonhole to put my MF into is it being a chronic, life long, incurable health condition… she said think about type 2 diabetes…… although type 2 diabetes is not a cancer….. it is a life long debilitating condition and if it is not controlled correctly could become life threatening….. most people would not know that someone has type 2 diabetes!!

If we now focus on MF….. it is rather the same…. most MF skin plaques…..

(and you have to remember that these little skin plaques are basically baby tumours and if they are not treated and controlled they could become a significant health issue)

…… as most MF plaques grow on areas of the body that are not normally visible it can be perceived as an invisible condition….. “not a real cancer!!” that has been said to me in the past…… but you, me and any other person who have MF know it’s a different story.

Normal-ish life can go on around our MF…… but as it develops there may be more challenges.

My story gets rather complicated as I developed a second type of aggressive NHL 14 years into my journey.

You have to put a lid on ‘guilt’….. unlike skin cancer, your cancer can’t be ‘cut out’ and all lI’ve become rosey again…….

MF is there in your body and will go through phases of occurrence….. and over the years can develop quicker….. the various levels of treatments available will put your MF into partial-remission but it will come back…… the longest partial-remission I had over my first 16 years was about 9 months before the next treatment cycle had to start….

I am actually on short holiday in Belfast at the moment but I will keep my open for any reply’s you put up and will do my best to answer your questions……

But as an encouragement, when I was first diagnosed our daughters were 14 and 18…… I continued to work for 12 years in a demanding teaching job and yes had various treatments over the first 16 years but we went on to see our daughters graduate, get married, set up very successful businesses and provide us with 4 beautiful granddaughters….. I turn 69 in Nov and am now 2 months away since my last treatment 9 years back and we continue to look forward to what else life has in store for us to enjoy.

Remember that my story is rather complicated due to me developing a second type of NHL (this can happen)…… but make a strong cup off coffee and click on this link > See my story and we can talk more when you are ready.

Hi Mike

Thank you for taking the time to reply particularly as you're on holiday.

It helps to hear from someone who has experience of MF particularly as most people I know have never heard of it.

I think it's going to take me some time to get my head around! 

Fortunately I'm well and the steroid cream is helping with the itching.

Cartwheel

Hi again Cartwheel …… I survived the Titanic Experience….. no water or ice was involved….. apart from some rain 

We are in good company…… the late great Sir Murray Walker of F1 fame had MF and lived to 97 with very low level treatments…… and Mr T, best known for his role as B. A. Baracus in the 80s A Team is 72 and getting on with life.

I eventually fully realised how ‘fortunate’ I was in ‘only’ having MF (although it got complicated when I developed my other Lymphoma)……. I say 'only’ as 7 years back I had a few very good friends who were diagnosed with their types of cancer…..

Although Lymphoma is the 5th most common type of cancer in the UK after breast, lung, colon and prostate cancers……. Lymphoma is very treatable….. even the fast-growing High-Grades….

My two friends had aggressive Lung and Colon Cancer…… they lasted 6-9 months post their diagnosis……. 7 years on I am living a great life.

It took over 16 years before I actually meet someone with MF…… !!

You may want to check out Lymphoma Action. Lymphoma Action is the main UK Lymphoma Specific Charity who have lots of good reliable information, videos..... basically all things Lymphoma....... pre, during and post treatment.

They run regular Support Platforms. I highly recommend these groups as there is nothing better than ‘talking’ with other who have walked or are walking the same journey……. and they do have a group specifically for CTCL including MF

They also have a great Buddy Service where you can be linked up with someone who has walked the same treatment journey…… I am an MF buddy with Lymphoma Action.

The LA helpline is open every week day from 10 till 3 on 0808 808 5555. This is a safe place to talk things through and get support.

Sorry to hear of this. In the States, there is the Cutaneous Lymphoma Foundation. You might have a peek and avail yourself of some of the wisdom there. The blessing, if there is one, is that your cancer is external - thus you had early warning and prompt action may be taken. Generally it is a chronic condition and is given maintenance therapy. If left untreated, it will eventually advance as any cancer does.  And, thankfully, there is much research into T-cell lymphomas, as they have been a forgotten corner of the cancer realm. I had systemic T-Cell Lymphomas, much more an immediate threat, but 16 years later, I am delighted to be anywhere.