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.
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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.
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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 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.
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.
