Anyone have Cutaneous T Cell Lymphoma?

Thank you dazlin.............your email helps. It's just hard to not know what it is. I have no diagnosis yet, just regular check ups and watching and waiting. I've only had one biopsy (spongeotic dermatitis) which is very general. I appreciate the input from everyone here. There are at minimum 30,000 rashes I was told by my 3rd dermatologist. It's hard to know. I don't have other symptoms so I'm hoping not cancer/lymphoma but I have to keep it in the back of my mind.

Hello and thanks for your post. I'd say, I'm glad to have company but.........I don't suppose either of us is happy to have this as a prospect (but none the less, I am happy to have someone to share with). I have seen two dermatologist and now a new oncologist (who is very 'out of the box') who said this type of T Cell Lymphoma is a possibility. She also said it is rare but that she has two patients with it and from my reading, it takes a very long time for diagnosis because doctors default to other, less ominous and rare conditions. So, this skin lymphoma, in the early stages, may be more common than they realize, just not diagnosed. I have seen two dermatologists and one oncologist and am heading to my third dermatologist for another look. I have a history of allergies so I have been eliminating things, trying new things, doing all I can to isolate a cause of allergy, but nothing yet. I have had the rash off and on for 8-9 months now. I'm treating it with steroid cream, which resolves it, but if I stop, it comes right back. My rash is only where there is a large number of lymph activity or nodes (chest, pelvis, neck, inner arms and legs). How about you? My biopsy came back as spongeotic dermatitis....which is often what Cutaneous T Cell Lymphoma is in the early stages. This is a treatable (but not curable condition) that can be halted or slowed down with various treatments but it can also spread to organs and do more damage if not diagnosed. Please keep me posted on your journeys with this. I hope neither of us has this.......but if we do, it would be great to be able to share our diagnosis and treatment.

Hello, new to these posts, groups and all of this information. I have had atopic dermatitis for 60 years and it has now evolved into something else that I am really suffering with. I have been to several dermatologists at the big hospitals around the Philadelphia area and they cannot diagnose my new condition however they have recently thrown out some new terms such as Cutaneous T cell lymphoma (CTCL). It has been a nightmare trying to get a true diagnosis as everyone knows, this is very hard to do. The doctors put labels on like Atypical Dermatitis or something that does not give you the answer or treatment you need.
This past winter my condition turned and went from my traditional atopic dermatitis (Eczema) to this new unknown condition that I don't have a name for but it has disabled me at time. When it was really bad, 90 percent of my body was covered in what they call Erythroderma (redness of the skin) but also was covered in lumps/hive like things over my back. I had uncontrollable shakes, night sweats, and severe sensitivity to anything touching my skin. I felt like I was having seizures at night it was so bad and my skin was burning, not itching like eczema gives you. The doctors gave me overdose amounts of prednisone (60/80)mg per day for over 3 months. It tore my system apart on the inside but did nothing, nothing for my bizarre skin condition.
I stopped taking and eating everything, it took weeks to taper off the prednisone but and so glad I am off of it. When I totally went on the lamb and ate a very bland diet, no coffee or anything, the lumps\hives went away after 4 - 6 weeks but cannot get rid of the Erythroderma, burning skin or skin sensitivity. I have been through it all my life with allergies, eczema, itching but am at wits end. Now I have a pre-cancerous patch on my arm about the size of a quarter that had been biopsied and told that it needs to be treated. my current doctor wants me to use a type of topical cream that will totally inflame the area and kill the cancer. That's all I need is to have my are totally inflamed for 6 - weeks. I'm tired of suffering and am glad to vent my frustrations.

I think we all need to remember that just because something is rare doesn't mean you don't have it.

Agreed!!

Hello, new to these posts, groups and all of this information. I have had atopic dermatitis for 60 years and it has now evolved into something else that I am really suffering with. I have been to several dermatologists at the big hospitals around the Philadelphia area and they cannot diagnose my new condition however they have recently thrown out some new terms such as Cutaneous T cell lymphoma (CTCL). It has been a nightmare trying to get a true diagnosis as everyone knows, this is very hard to do. The doctors put labels on like Atypical Dermatitis or something that does not give you the answer or treatment you need.
This past winter my condition turned and went from my traditional atopic dermatitis (Eczema) to this new unknown condition that I don't have a name for but it has disabled me at time. When it was really bad, 90 percent of my body was covered in what they call Erythroderma (redness of the skin) but also was covered in lumps/hive like things over my back. I had uncontrollable shakes, night sweats, and severe sensitivity to anything touching my skin. I felt like I was having seizures at night it was so bad and my skin was burning, not itching like eczema gives you. The doctors gave me overdose amounts of prednisone (60/80)mg per day for over 3 months. It tore my system apart on the inside but did nothing, nothing for my bizarre skin condition.
I stopped taking and eating everything, it took weeks to taper off the prednisone but and so glad I am off of it. When I totally went on the lamb and ate a very bland diet, no coffee or anything, the lumps\hives went away after 4 - 6 weeks but cannot get rid of the Erythroderma, burning skin or skin sensitivity. I have been through it all my life with allergies, eczema, itching but am at wits end. Now I have a pre-cancerous patch on my arm about the size of a quarter that had been biopsied and told that it needs to be treated. my current doctor wants me to use a type of topical cream that will totally inflame the area and kill the cancer. That's all I need is to have my are totally inflamed for 6 - weeks. I'm tired of suffering and am glad to vent my frustrations.

Hi I just found out I have this, I am on Methotrexate 2.5mg 4 pills a week. Its suppose to be curable. Although I am in denial, I left my clinic without any information. So if you can help that would be great!