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Old 03-16-2005, 07:54 AM   #1
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nancy1234 HB User
Question cutaneous t cell lymphoma

my brother has just been diagnosed with skin lymphoma. apparently its quite rare. has anyone heard of this or know of anyone else who has it. any info would be appreciated

 
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Old 03-16-2005, 05:38 PM   #2
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Re: cutaneous t cell lymphoma

Quote:
Originally Posted by nancy1234
my brother has just been diagnosed with skin lymphoma. apparently its quite rare. has anyone heard of this or know of anyone else who has it. any info would be appreciated
I have heard of it, and although it is rare, that is relative to the follicular and mix cellular types of lymphoma. Older people often have the cutaneous version and onlookers don't recognize it because it looks like a skin disorder that elderly might have.

 
Old 03-18-2005, 12:45 PM   #3
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Re: cutaneous t cell lymphoma

Quote:
Originally Posted by nancy1234
my brother has just been diagnosed with skin lymphoma. apparently its quite rare. has anyone heard of this or know of anyone else who has it. any info would be appreciated
This disease used to be called mycosis fungoides and, in its more serious form, sezary syndrome. You can look them up on the internet. A relative was successfully treated with photophoresis. Other treatments used by different doctors involve treatments with PUVA lights. I can't say enough good things about photophoresis. It is a machine somewhat similar to kidney dialysis, where the blood circulates in the machine and is treated with a drug psoralin (I'm not sure of the spelling). I'd try to find out if anyone in your area provides this treatment. The disease is often misdiagnosed as severe exzema.

 
Old 03-18-2005, 12:59 PM   #4
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Re: cutaneous t cell lymphoma

Yale Cancer Center in New Haven Connecticut has a photophoresis unit. If you are nowhere near there, you might call and see if they can direct you to a doctor in your area who treats this disease.

 
Old 03-19-2005, 08:52 AM   #5
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Question Re: cutaneous t cell lymphoma

Thanks everyone for the replies. We actually live in Scotland so we have the NHS. He has to have radiotherapy next week and is currently undergoing the PUVA treatment,still awaiting results of lung ct and liver biopsy. Bone marrow biopsy and lymph node biopsy were both negative so that sounds hopeful

 
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