Hi, my mom’s diagnostic is T-Lymphoma with Sezary syndrome. She is treated with Poteligeo. Her skin was flaky but after 2 treatments, the skin looks good, no flaky. BUT, the worse thing is the itching all over the body. No creams help her. What should we try to calm the itching on the skin? It doesn't let her sleep. How can we help her?
I'd be very cautious about playing down mycosis fungoidis I lost my finger to it and my thumb is seriously damaged.i haven't been staged yet but probably above 1a as I've developed tumours guessing 1b or 2 almost certainly not 3 or 4 as the CT scan has not shown up any compromised internal organs.mine was misdiagnosed firstly as ezecma and psoriasis and later orf,a rare viral disease of sheep and goats,when the tumours developed on the finger and thumb . probably a lot more common than we think at 1a but the people think that they have psoriasis or ezecma which is fine providing it doesn't move to 1b and beyond as they all treated in similar ways.... topical steroids but if it does move it's an opportunity missed to intercept a life threatening cancer.
@@Llenoj56 well since then they have staged it at 2b the beginning of the advanced disease.puva and steroids had no effect on it at all so on Targretin, Bexetrone and Gamma Ray radiation which has effected it but it's coming back already after only a month or so! Variety of skin infections too mostly surface but a nasty one where my right foot became swollen up.my understanding of Mycosis Fungoides is it effects people in different ways and it's hard to predict the outcome.they say about 70 percent of people don't advance beyond 1a or b but I'd guess that given the misdiagnosis of ezecma or psoriasis there might be many more with low grade Mycosis Fungoides? think 2 years ago I'd never heard of cutaneous t cell lymphoma or Mycosis Fungoides!
@@kevanhubbard9673 I am very sorry for all of your issues. I was also mis-diagnosed with eczema in 1996 which became more severe over the years. I went to another derm in 2008, who did a biopsy. MF is a very rare disease, and only about 1 in 3 persons per million have it, yet it is the most common form of CTCL. It really does vary from person to person. Mine has never itched, but it burns and stings, especially in the winter. I wish you all the best.
@@Llenoj56 my daughter has growing red patches of skin for years that didn't look like eczema. They start as little red dots, merge and grow into huge red patches.
Hi, my mom’s diagnostic is T-Lymphoma with Sezary syndrome. She is treated with Poteligeo. Her skin was flaky but after 2 treatments, the skin looks good, no flaky. BUT, the worse thing is the itching all over the body. No creams help her. What should we try to calm the itching on the skin? It doesn't let her sleep. How can we help her?
Thsnks you for sharing your story. I have just been diagnosed last month, but I have yet to see the specialist. Did you have your lymphoma staged?
i had it for 14 years. im 15 and i had been diognosed when i was one. have urs went away?
I had it misdiagnosed for 12 years before correctly diagnosed.
@@Llenoj56 may I ask what they originally diagnosed you with?
@@fafoosnick6839 eczema
I have had it for 22 years
do you still use a treatment? what kind please?
Not daily, but in the winter it acts up, so then I use triamcinolone cream
@@Llenoj56 thanks for sharing
th-cam.com/video/tkjn-EF2CV0/w-d-xo.html
I'd be very cautious about playing down mycosis fungoidis I lost my finger to it and my thumb is seriously damaged.i haven't been staged yet but probably above 1a as I've developed tumours guessing 1b or 2 almost certainly not 3 or 4 as the CT scan has not shown up any compromised internal organs.mine was misdiagnosed firstly as ezecma and psoriasis and later orf,a rare viral disease of sheep and goats,when the tumours developed on the finger and thumb . probably a lot more common than we think at 1a but the people think that they have psoriasis or ezecma which is fine providing it doesn't move to 1b and beyond as they all treated in similar ways.... topical steroids but if it does move it's an opportunity missed to intercept a life threatening cancer.
True, Kevin, so sorry about your hand. Everyone is different. I have seen people at MD Anderson who have much worse cases.
@@Llenoj56 well since then they have staged it at 2b the beginning of the advanced disease.puva and steroids had no effect on it at all so on Targretin, Bexetrone and Gamma Ray radiation which has effected it but it's coming back already after only a month or so! Variety of skin infections too mostly surface but a nasty one where my right foot became swollen up.my understanding of Mycosis Fungoides is it effects people in different ways and it's hard to predict the outcome.they say about 70 percent of people don't advance beyond 1a or b but I'd guess that given the misdiagnosis of ezecma or psoriasis there might be many more with low grade Mycosis Fungoides? think 2 years ago I'd never heard of cutaneous t cell lymphoma or Mycosis Fungoides!
@@kevanhubbard9673 I am very sorry for all of your issues. I was also mis-diagnosed with eczema in 1996 which became more severe over the years. I went to another derm in 2008, who did a biopsy. MF is a very rare disease, and only about 1 in 3 persons per million have it, yet it is the most common form of CTCL. It really does vary from person to person. Mine has never itched, but it burns and stings, especially in the winter. I wish you all the best.
th-cam.com/video/tkjn-EF2CV0/w-d-xo.html
@@Llenoj56 my daughter has growing red patches of skin for years that didn't look like eczema. They start as little red dots, merge and grow into huge red patches.
She looks like David Beckham.