Diagnosis and treatment

Hi again Ayrshire50m and well done navigating across to this rather unique corner of the community.

It’s getting late so my mind is not that switched on  but you may want see my story…… it is rather complicated but you can see my story in this link (my story)

I had to have various treatments over my 23+ years but I am 8.5 years out from my last treatment, turning 68 last Nov and am living a great life.

Do come back to me with any questions you have.

Hi again Ayrshire50m …… do you live in Ayrshire?…… anyways good morning.

CTCL…… is a complicated type of slow growing Low-grade non-Hodgkin lymphoma.

You will see for this CTCL link there are a few different types of Skin NHLs…… so it is important that the pathology is done to get your type pinpointed. 

As you said you most likely have been living with it for years….  this is often the case with CTCL sufferers…… Dermatologist can work their whole career and not see someone with a CTCL.

15 years back I was invited by my great Derm to the yearly Scottish Dermatology Society get together in Inverness….. and out of 65 Derms only 3 had seen CTCL.

My type is MF……. this is a 7 in a million rare type and on the whole you can continue to live and work a normal life around it….. I worked in a demanding dedication job on a full timetable until I retired.

Sir Murray Walker of F1 fame lived to his mid 90s and only had a little treatment and BA Baracus (Mr T) of the original A Team is still going strong with his MF….

My story turns challenging as unfortunately I was one of the very few people where I also developed the more aggressive Peripheral T-cell lymphoma not otherwise specified (PTCL-NOS) 

So we had to become aggressive in our approach….   But as I said I am 8.5 years out from my last treatment and doing great.

Do come back with your questions ..,,, I may be slow in answering at the moment as we are down in Surrey for our number 3 of 4 granddaughters 8th birthday today but I will pick up your reply at some point.

Thanks Mike for sharing, you certainly have been through the mill to put it mildy. I didn't fully appreciate the rarity of the condition,  this explains why the entire dermatology team were so kean to examine me.

I've read there are loads of variants, I guess each treatment will be aligned with each type of the condition. 

It does seem to have spread rather quickly of late, which is obviously concerning and causes a few sleepless nights. 

Despite this im ready to take it on , just wish I knew what that was. 

I'll definitely keep in touch, and thanks again for your assistance , definitely most helpful and informative . 

I guess I await the call and simply take it from there.

And yes I'm Ayrshire through and through lol.

Thanks Mike

Hi - have you had some areas biopsied?…… as this is the only way to get a clearly diagnose of CTCL…… as you will have seen my Derm was 99% sure as to my diagnosis but it took a full year and 6 biopsies to get the truth.

I have meet a lot of folks with CTCL over the years both on here but more so through Lymphoma Action….. I also volunteer with LA covering CTCL

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.

They run regular Support Platforms including a specific group covering Skin Lymphomas (I unfortunately can’t attend these groups as I have other long term commitment's).……. I highly recommend these groups as there is nothing better than talking with others who have walked the journey.

They also have a great Lymphoma Action Buddy Service where people can be linked up with someone who has walked the same treatment journey……. this includes CTCL 

They also have a Lymphoma helpline on 0808 808 5555 where you can talk with someone and get support - open every week day from 10 till 3.

If you have a spare 30 mins you can listen to a podcast that I did along with another person living with MF - Don't walk the journey by yourself - Mike and Kasia

So sorry to hear of this. So, you have received a clear diagnosis? There are non-cancerous lymphoproliferative conditions that mimic lymphoma, but if a malignancy has been found, then a different tack must be taken. The majority of cutaneous lymphoma cases, at least over here in the states, are referred to hematology/oncology by dermatologists who have reached wit's end.

   If a particular variant has been identified, then a bit of study into that type is warranted. "Knowledge is power" is a very hackneyed phrase, but runs very true in the cancer realm. Cutaneous Lymphomas generally are rather indolent, but T-Cell Lymphomas as a type are rather heterogeneous and exhibit an exceptionally wide variety of sub-types.

   It is all confusion at the start, but the learning curve is steep and soon it will begin to make much more sense. Do let us know how you go.