Anyone have Cutaneous T Cell Lymphoma?

Agreed!!

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

So sorry to hear about your condition. I too suffer with eczema from birth and after my breast cancer mastectomies had a rash on several parts of my skin for over a year and half. The doctors couldn't diagnose it but said it might be early CTCL. It's a wait and watch for me. It seems almost impossible for doctors to diagnose skin conditions unfortunately. They will say that CTCL is rare but I think more than likely it is just under diagnosed. I hope you'll find some answers and some relief. People (including doctors) who don't have trouble with their skin don't understand how horrible it can feel and the impact it has on your day to day life. Just trying to lend support to you. Wish I had something more helpful to share but keep us posted please and thanks for sharing when you feel so badly.
Hugs

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 agree Cindy, it's tough not getting answers. I've had soooo many tests, so many things popped up...even nodules in my lungs. Dr was ready to do surgery, then just before we scheduled it, one nodule decreased in size, and none had a cancerous appearance. Great as that is..we don't know what they are. Had too many scares that took a toll on me and my poor family. I can't live that way, so I decided to stay focused on how good I feel, despite all the crappiness. I take it one day at a time, and stay thankful for everything I do, and try my very best to live a life of quality. Hang in there, and count your blessings!!

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.

Hi cindylb, I saw your post today...im new here and have MGUS. The one thing I can relate to you, is I also experience awful itchy rashes. I was referred to Mayo in 2014 since my local derm suspected something medical brewing. At that time my rashes were wide spread, tormenting itchy, day and night. Some days I just scratched, and cried. It started on the back of my head near the base, then popped up anywhere. I had 6 skin biopsies, with no sure diagnosis. The derm in mayo did say sometimes they don't get a clear picture until they get closer. Then last year, I was told I have a low case mgus. Dr doesn't say rash is connected, but just don't know anymore. Over the years I have switched and tried everything from diet, to laundry detergent, my environment, personal toiletries, etc etc. I also had an enlarged lymph node removed from my groin in 2014, after i had become very sick with low grade fever, excruciating flank pain, and rapid weight loss, lymphoma was suspected, but tested negative. No further explanations. I gradually got better within 8 weeks. I still experience ITCHY rashes, just maddening, but not nearly as severe...just pops up occasionally. I use a prescription cream which helps. All I can say to you, is keep seeking help, and switch drs if your not comfortable. I hope you get treatment asap. I'm not sure if you said you were diagnosed with lymphoma, or still getting tests?? Either way, I feel for you, and hope you find relief for those AWFUL rashes!!

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Hello all....
I still have no firm diagnosis for my ongoing skin rash but thought I'd reach out and see if anyone with Lymphoma has any new insights with your diagnosis and treatment that might be of help. I have now had a rash for one year. It's itchy, only in three places where I there are large numbers of lymph nodes. I'm using a steroid cream only. If this is T Cell Cutaneous Lymphoma this is the only treatment until it advances (I guess). I was hoping it would just go away. My oncologist says if it is a skin lymphoma that there is no additional treatment until the condition progresses. Worrisome and irritating to just be sitting and waiting on this 'maybe' diagnosis.

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.

It sounds like we are in similar situations. I have had a rash for over two years. Sometimes mild and other times debilitating. I have been to two allergists and three dermatologist. The allergist said it’s contact dermatitis with my allergy being everything scented, botanicals, dogs, metal etc., basically everything. However as avoiding triggers did nothing. My most recent dermatologist is leaning towards t-cell lymphoma, which as you said, is really rare.