Anyone have Cutaneous T Cell Lymphoma?

I too have been diagnosed with follicular lymphoma. I just had my first pet scan since coming to mayo in April for a 2nd opinion. The pet scan showed better results than the Ct scans I had done at my previous clinic. I just had a bone marrow biopsy and if that comes back clean then I can have a low impact radiation treatment on the affected nodes in my neck. I think the curcumin is probably helping. I take that as well.

I have stage 3 follicular lymphoma. Mine was found while doing a CT Scan prior to surgery for stage 1 cecum cancer. I had zero symptons for either cancer. I have perfect blood work and no visual swollen lymph nodes. The swollen lymphes they found were next to my Aorta.. They did a CT guided biopsy of the nodes to determine the lymphoma. When they removed 1 foot of my colon they took 30 lymph nodes. Some of those as well tested positive for lymphoma. I was getting CT scans every 3 months for 1 year. I did not take any medicine. Just some added vitamins for 6 months only, the lymph nodes went down in size on there own. I go next month again for a CT scan. Lets see if by doing nothing they have continued to shrink? This is actually my first time of having a CT scan taken at 6 months..

Wow, what an endeavor for you. Amazed you had no symptoms. Scary! I've had two strokes and lots of blood clots and two heart attacks. I've lost track of the multitude of CT's I've had. Sure hope the next DX isn't Cancer. (Hoping there is none) X ing my fingers. I wish you well and no more DX for you either!
Pam

What is curcumin? Prescription or natural thing?
Pam

I had the same thing on my neck. It was large. Had radiation and started taking curcumin on my own. Had two pet scans since. No detectable follicular lymphoma since. Over two years. another pet scan in a year.

curcumin is a compound in the spice turmeric. it only comprises about 5 percent of turmeric. it has most of the medicinal properties of turmeric. That is why curcumin in tablets is used.

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.

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 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.

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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