Welcome to all those who joined us over the past month.
We are so sorry that you had to find us but you have found a supportive place where we all understand what this blood cancer journey is like.
We are a rather exclusive group of people and with that brings a lack of knowledge and information so this forum could be invaluable to everyone on their T-Cell journey. So recording your first hand life experience living with a T-Cell condition is so important regardless of how small that information is.
If you have any questions or just want to talk with someone just hit the 'Start a Discussion' tab and introduce yourself to the group and remember to go to the right on the group home page and select how you want to receive email notifications when someone answers your posts.
If you have not done this, it would be really useful if you could put some information in your profile as this will help others when replying to you.
Just click on your username and then select 'Edit Profile' under the Profile Settings. If you're not sure what sort of thing to put just click on our forum names to get an idea.
Have a look through our various Macmillan Support Line Services then call them on 0808 808 00 00 to be very helpful covering Emotional Support and Practical Information. Clinical Information and Financial Support and Work Guidance mostly open 8.00 to 8.00 but check the link.
We are always around to help as best as we can.
Well, at last I may be getting somewhere! Not that I necessarily wanted to be getting here particularly. Having had at least 2 years of being told different things about my skin, the latest biopsies have shown that T-cell Cutaneous Lymphoma is probably the diagnosis. I am so pleased and relieved having known for a long time that it wasn't 'just eczema'. In fact I had diagnosed myself long ago. I have an urgent referral to Jimmy's and an ultrasound on the lymph nodes in my neck next Friday. Obviously this could turn out to be one of the many permutations of lymphoma but at least someone is on my case. I know how hard it is to diagnose and my consultant locally has been lovely but I am now being pushed up a notch.
So, what do I need?! Just a few comforting words perhaps...my brain is full of medical stuff as I have researched this for 2 years...
I am peaceful and await my appointment soon
All best to everyone living with uncertainties
Hi again Mary, if you have looked at my profile you will have seen that I also was diagnosed with Cutaneous T-Cell Lymphoma back in 1999 and apart from some regular skin treatments lived and worked fir 14 years before full on treatment was required.
They will check your Lymph-nodes to check what stage you are at but this is not like normal sold tumour cancers.
Keep looking at this being like a chronic illness.
People can live all their lives without having full on treatments - let’s see what your team comes up with.
I have actually meet someone else at our local Maggie’s Heamatology Support group who has CTCL and he also went 13-14 years before starting on the same treatment journey I had been on. He is now 6 weeks post his Stem Cell Transplant and doing great.
We both agreed that apart from having the regular skin treatments it was like living with a bad skin condition for 14 years. We also agreed that we never had any fatigue over these years........ there is something to be said about making yourself fatigued with worry and stress.
Our brain uses 20% of our daily energy requirements - this is for someone with no illness........ add living a stressful life this goes up to 40-50%...... and that is before you add being treated for cancer (chemo/radiotherapy) as this can use your 70-80% of your daily energy requirements........ now you will get fatigue.
CTCL is a slow burn Lymphoma and as I said, people can live all their lives without having major treatments...... so it is important how you position yourself on how you are going to live with this - let’s see what your team comes back with.
Hi Mary, I'm new to the group (guessing you're also a Tike given you talked about Jimmy's. I've just been diagnosed with T Cell after a decade of problem skin. I've now developed a lesion and the thing that's driving me nuts is the fatigue. It's debilitating particularly as I've been used to a full on lifestyle.
Any tips you've learnt along the way this last year?
I have suspected CTCL, had one flat lesion 6 years ago which went away, but it appeared now. Can CTCL disappear for 6 years?
Hi Squirrel and I see it's your first post so welcome to this corner of the community.
I am Mike and help out around our Lymphoma groups. I have lived with CTCL for over 22 years now so know this condition rather well.
In all the years living with CTCL and talking with others with the same condition a 6 year gap between a lesion diapering then reappearing is very unusual....... in my very early days the longest period of 'remission' was 6 - 9 months but even then it moved quickly within a few years to always had some type of leasion somewhere on my body and by 6 years in I had 70% body coverage.
"Suspected CTCL"..... are you seeing a Dermatologist and they are saying this?...... as if they suspected CTCL they would be doing a biopsy to see if it is to rule this our and look at the real reason.
There are many types of skin conditions as well as many different types of Skin Lymphomas and these are not easy diagnosed - for me it took a year and 6 biopsies.
Happy to chat more.
Thank you for your reply. I saw a dermatologist 6 years ago, but my the time ,y biopsy appointment came through my lesion disappeared. Now, the same lesion came back and my GP prescribed for me anti-fungal ointment. I plan to complete the ointment treatment and see what happens
Hi again, that is encouraging news, it may not feel like it but the very fact that the Dermatologist had nothing to biopsy is great and a good sign.
I am guessing that you may have been doing some online research - apologies if I am wrong. Skin Lymphomas are rather rare and are hard to diagnose but the one thing about them is once they start showing their ugly face they keep doing so and as time goes past the body coverage increases, various levels of treatment need to be used.
Lets look for the Anti-fungle to do it's job and put this to bed for another 6 years.
This group is always around to chat in.
Thank you. Saw my GP, who was not sure as I did have twice erythema in the same place, the same site. Once 10 years ago and the second time 6 years ago. Both time the flat red patches disappeared completely. And yes, I was seen twice by a dermatologist. One requested a biopsy, but by the time I had an appointment, the lesion disappeared. Now I have had the erythema for 5 months, and the GP asked me to come back in 3 months time.