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  • Mycosis Fungoides -anyone else?

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    Old 06-09-2009, 05:22 PM   #1
    Elf_Ears
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    Mycosis Fungoides -anyone else?

    Hi,

    My husband was diagnosed with Mycosis Fungoides (MF), a cutaneous T-cell lymphoma in April. It seems to be in an early stage, but we really don't know yet, as all the info isn't in. His only symptom was matching dry, scaly patches on his flanks. (Top of the front of his legs and onto his truck, about 8" X 3-4" areas.)

    The patches have been there for 10+ years, and never itched. But when a new 3"x4" one showed up on my husband's side, as well as a small lump under the skin nearby, I urged him to have it checked out. BTW, a dermatologist did happen to look at the patches a couple years ago, when my dh was in to have warts frozen, but her impression was that it was an eczema problem. She prescribed cream, which dh never filled because he hates the greasy feeling of creams. So 2 years later, he saw another doc in the same group, and that one did a punch biopsy. When it came back positive, he said to use a corti-stearoid cream - that it would make it go away. He didn't seem very worried about it, and passed it off as a nuisance - no biggie.

    Then I did my homework, and we decided to see a local oncologist about it. He said it was rare, about 1 case in 100,000 people. So he needed to do his homework. Meanwhile, he ordered a CT scan of dh's trunk, to make sure it's not anywhere else. BTW, he thought the lump - which dh forgot to mention to the dermatologist - was a fatty cyst, nothing to worry about.

    The CT scan was done Fri. I was hoping we'd get a call today, but nothing.

    We also saw my cousin, a dermatologist, who practices about an hour away, and he thought Targretin gel would be more aggressive that the cortico-stearoid cream. The cortico-stearoid cream did make the scaly patches clear up, leaving thin, hairless skin. My cousin also pointed out to us that there was no hair because the cancer had destroyed all the hair follicles.

    I just thought I'd try and see if anyone here has this, and how their treatment is going. From what I read, there's no cure, and if caught early, most people live a normal life span, fighting it along the way with creams and other treatments, like puva. So, we're looking on the bright side. But it's still unnerving.
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    Old 06-09-2009, 06:55 PM   #2
    Oleander53
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    Re: Mycosis Fungoides -anyone else?

    Anything connected to the word "cancer" is unnerving..... Very interesting. Please let us know what you find out. How old is your husband? Good for you doing your own research.....We are behind you here.

    Oleander

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    Old 06-09-2009, 07:06 PM   #3
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    Re: Mycosis Fungoides -anyone else?

    My husband is 44. I really appreciate your support.
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    Old 06-10-2009, 08:11 AM   #4
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    Re: Mycosis Fungoides -anyone else?

    I've never heard of this form of skin cancer - but there really are many types. As Oleander states, just hearing that word is greatly unnerving! However, it is true that in most cases, cancer caught early is very treatable. This is a great support board, and I know I'm pulling for your husband! Let us know how this turns out. You could very well be providing information for another person.

     
    Old 06-11-2009, 06:47 AM   #5
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    Re: Mycosis Fungoides -anyone else?

    Mycosis fungoides is not a skin cancer, but a type of indolent lymphoma that shows up on the skin rather than attacking the internal organs like other lymphomas. It is a rare disease and very treatable. Because it is rare, it is suggested that patients seek out a specialist for a consultation.

     
    Old 06-12-2009, 07:21 PM   #6
    Elf_Ears
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    Re: Mycosis Fungoides -anyone else?

    Thanks, Judy, for your input. I don't really understand how a cancer on the skin in not skin cancer, but I sorta get it... I'll have to press my cousin about this.

    My husband's scan came back normal - a big relief! Still, as my cousin warned us, he's seen MF go from "0-60" in a minute. So, we need to keep it at bay.

    We will look for a specialist. I've heard that again and again from the folks on the email forum I joined at the Cutaneous Lymphoma Foundation.
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    Old 03-15-2010, 07:04 AM   #7
    Cloner97
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    Re: Mycosis Fungoides -anyone else?

    I'd be very interested in hearing how the Targretin Gel worked. I was recently prescribed it. Wow, it's expensive too!!!

     
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