Diagnosis mycosis fungoides

Hi and welcome to the rare T-Cell Lymphoma world. I am Mike Thehighlander and I was diagnosed with MF in 1999....... my story is rather long and complicated but hit my forum name and get a Single Malt.

You will see from my story that my diagnosis was classified as Cutaneous T Cell Lymphoma (Skin Lymphoma) (CTCL)........ MF tends to be the term that Dermatologists use but when you go into the Heamatology world they can tend to look at it differently, but it is small margins - all said and done, it’s a blood cancer.

Back in 1999 I was told I would never ever see remission and ‘it’ would get me at some point in the future...... fast forward to 19 September 2016 I was told I was in Remission and NED (No Evident Disease)

Up until a few months ago I had never meet someone who had MF but found myself sitting beside a lad at our local Maggie’s Centre Heamatology Support Group who had MF and was on the exact same journey as I had completed.

I am a touch surprised that you are going into chemo this quick........ it took me 14 years....... have they said the name of the chemo regime they are looking to use?

Ask your questions as I have been through most of everything that MF/CTCL can throw at someone.

Hi mike 

Thanks for the reply and welcome . I have added my MF journey in my profile and yes I am also surprised that chemotherapy has been mentioned so soon. I will find out more about this on Monday along with the bone biopsy results as the haematologist has also stated he will have a plan of care in place for me .

Another two unrest full sleepless nights to go.

I was wondering what other symptoms if any are involved with MF.  Over the last few days both ankles and knee's have become sore, not really painful but enough for me to notice a difference , also mostly at night both feet feeling really hot which is unusual for me. These may be just a coincidence but I will mention it to the haematologist. 

I have read your long journey in your profile and this brings me great comfort how positive you remain and helpful to all on this forum. 

Thanks again mike .

Regards 

Hi again, so apart from what you have read in my profile I had no other symptoms over the first 14 years - just bad skin in various degrees.

Even when my tennis ball started to grow on my forehead - still nothing.

I am a very chilled person, glass half full thing so did not let stress get to me - a good consultant friend said to me in the very early day’s “You basically can’t control the medical side of this but you can control the battle between the ears”...... stress brings all kinds of ‘what if’s?’ and every little medical change will ‘be the cancer’ but it could well be your body kicking back against the stress.

My Dermatologist was rather switched on and well respected person in his area, yes, quirky and old school, but he persistently worked through the treatment options available to him before sending me to Haematology.

As your scans are clear (never had a bad scan in all the first 14 years) and if nothing shows up in your BMB you do need to ask if chemo is a sledgehammer to crack a nut.

You do need to ask if they have treated this type of  condition before and have they talked with experts in this area?

Had your Dermatologist treated MF before?

Are you being treated in a cancer centre of excellence?

The few years I was on Becarotene (one of the last line treatments for Dermatologists) it did a great job but we did have to fight hard to get the £80 per day for it!!!!!

Once you start down the chemo route the box is open and some treatments can not be repeated.

Lots of questions...... but you do need to be ready for your appointments.

I was just thinking, the final treatment that my Dermatologist had in his back pocket was to send me for 2 weeks of Total Skin Electron Beam Therapy.

https://www.guysandstthomas.nhs.uk/resources/patient-information/cancer/radiotherapy/total-skin-electron-beam-therapy-(TSEBT).pdf

But due to how my tennis ball came up so quick we had to go straight to Radiotherapy.

In the lead up to my second Stem Cell Transplant (SCT) I did go down to The Freeman In Newcastle to see a MF/CTCL expert as we were looking at using TSEBT to be part of my conditioning to go into SCT but he advised that my hospital in Glasgow (The Beatson Cancer Centre) should do spot radiotherapy to clean all the areas showing activity so this took 30 sessions before going into SCT.

Thanks again Mike all good advice. I have only seen the dermatologist twice the first time a biopsy was taken and the second visit to get the bad news. Then I was referred to the haematology doctor in Belfast city hospital. I have only been twice to the haematology doctor, the first visit was a blood test and checked me over the second was to give me the result of the petct scan and checked me over again and didn't have the BMB results. I was told however that some kind of chemotherapy will be needed due to the number of tumors that had appeared . These tumors as he calls them are about nearly the same size as a 5p piece they remind me of boils on the skin. 

The most hurtful tumors are on the back of my upper legs making it difficult to sit for any length of time plus one on my waist line area which gets sore wearing trousers etc  .

The haematologist mentioned a specialist unit in London that he was consulting with regarding my case. 

I reckon Monday will be interesting to see which route I will have to follow. 

This description of the type and position of the tumours...... and they are blood cancer tumours, sounds just the same as me. 

I also had an appointment to go to London to Guys but we agreed to cancel this after my trip to Newcastle as the expert in London was in agreement about the way forward.

It will be seldom that a Haematologist will have treated MF so go with your list of questions.

I was referred initially to an oncologists to treat the tennis ball but as my lymph nodes reacted it was upstairs to Heamatology.

A Haematologists first go-to weapon will be chemo so make sure you have a clear reason from them fir this being the very best way forward.

Hello again, 

My appointment on Monday went well and the bone marrow biopsy blood was normal however the bone itself still hasn't been fully analyzed. 

At this appointment the dermatologist from the cancer unit was also present and looked me over. Both specialists agreed that the best way forward for me was radiotherapy. Firstly to the worst largest tumor to begin with then on to total skin radiotherapy. 

Yesterday I attended the radiotherapy unit for my introduction into this new phase of life that has been cast upon me and went over the procedure that will take place and signed the paper work after being informed of the side effects etc. 

Next it was off to the mould room for a cast to be made for goggles that will have to be worn when the full skin radiotherapy begins. 

The first radiotherapy will begin in seven days time on the largest tumor however as I am breaking out in more of these tumors I believe I will have a number of these large tumors at the same time. 

Thanks for taking the time to read my story and any help and advice is truly appreciated 

Good morning and a plan!

Pleased that they have not went with the chemotherapy as at this stage as it would have been an 'all in' situation and you do have other fall back treatments if and when required.

I found the mould rooms fascinating. I was not allowed to keep my first lead mask (recyclable) but I do have both my upper body and full face mask from my second and third radiotherapy........ they are up in the wall of my garage and I use them (and my granddaughters) to clean off paint brushes......hoping that one day I can exhibit them in a gallery lol.

I had no side effects with my first 5 zaps on my tennis ball tumour.

The ten leading up to my first Stem Cell Transplant (SCT) were ok but hard on the back as I was on the table pinned down with the body mould and as I have Spinal Osteoarthritis, I had to have painkillers 30mins before each treatment. As I was also getting other inpatient treatment getting me ready for SCT I can't say if there were any specific radiotherapy side effects.

30 radiotherapy sessions leading up to my second SCT were ok, but eventually the fatigue set in.

Use lots of moisturiser (they should give you) their preferred type) as this helps stop your skin drying out.

I would also advise that you use some very gentle, unscented gel/soap.... I actually used Dermol 200 Shower Emollient and Dermal 500 Lotion for years........ All this is available on prescription - (free in Scotland) Cancer exemption certificates are available across the uk - just ask.

All the best and I am always around to help out.

keep away from aftershave and deodorant during the zaps as your skin will get secretive.

Good morning mike and again thanks for the reply. Lots of good advice noted for a new member to this elite group ;-)  Over the last couple of months i have been using diprobase for showering, just spread it on rinse off and pat dry. As i have a number of small tumors on the face i will be using the speedo type lead glasses to protect the eyes,i must ask for these at the end of treatment as i would be sure they would be disposed off by the hospital. Not sure when the full body treatment will start yet and guess that depends on the first treatment to the worst tumor . 

I will keep this tread posted while my journey continues ..............