Mycosis Fungoides/Cutaneous T-cell Lymphoma

gramma · New User Joined: 19 Dec 2006 Posts: 6

Has anyone out there been diagnosed w/Mycosis Fungoides, also known as Cutaneous T-cell Lymphoma? My dermatologist suspects this is what I have (early stage), biopsy results not back yet. If I do...what can I expect w/regard to exams/tests/treatment/future? Shocked

judy905 · New User Joined: 21 Dec 2006 Posts: 3

I have had MF/CTCL for seventeen years. Feel free to email me at: judy@clfoundation.org and I'll tell you everything you need to know.

Judy

suzieque · New User Joined: 29 Dec 2006 Posts: 4 Location: Boston, MA

I have a very rare form of CTCL and was undiagnosed for over 1-1/2 years. I had skin lesions, tumors and open wounds from head to toe.

My point is to get a 2nd opinion on any diagnosis.

Good luck.

gramma · New User Joined: 19 Dec 2006 Posts: 6

Thank you suzieque, I've got plans to get more opinions for sure. I'm hearing/reading too many stories about folks not getting correctly diagnosed for long periods of time. Scarry! I should be getting my biopsy results this next week. I appreciate your response. gramma

suzieque · New User Joined: 29 Dec 2006 Posts: 4 Location: Boston, MA

Hello gramma:

Glad to help. I was hospitalized several times for weeks at a time, underwent dozens of biopsies, etc., etc. before I was diagnosed. In fact, my biopsies came back as eczema, psorasis, squamous cell carcinoma plus many more!

CTCL is extremely difficult to diagnose and just don't want anyone to go thru what I went thru.

Good luck

judy905 · New User Joined: 21 Dec 2006 Posts: 3

Suzique, since you are in Boston, I assume you are seeing either Tom Kupper or Marie-France Demierre for treatment. I'm sorry to hear it took so long for a diagnosis. Usually people in your area are diagnosed earlier as there is a greater concentration of specialists on the east coast.

Gramma...where do you live? Do you have a specialist near you?

Judy

gramma · New User Joined: 19 Dec 2006 Posts: 6

Hi Judy, I'm in Yuma AZ for the winter months...just 3 hours from the Mayo clinic in Scottsdale where they work in teams and I've checked. They have specialist there..whew. Like I said tho...I'm not yet diagnosed but after Suzie's experience w/the variety of (incorrect) diagnosis.... I'll ask my local dermatologist to refer me to Mayo regardless of what the biopsy says. I really appreciate the responses....I've already calmed down just knowing there's someone to talk to who understands.

suzieque · New User Joined: 29 Dec 2006 Posts: 4 Location: Boston, MA

Hello Judy905:

Where do you receive your treatment? Have you had any skin flareups in your 17 years? Did you receive a transplant?

Sorry for all the questions, it's hard to find someone who has been thru what I have.

judy905 · New User Joined: 21 Dec 2006 Posts: 3

Gramma...the Cutaneous Lymphoma Foundation is going to have an educational forum in your area sometime this spring.

Suzique... Oven the past 17 years I have had flareups, but now I am in remission and not under any treatment.

Both of you...you may want to join the CTCL-MF listserv for more support and information. There are over 1000 members who are willing to share their experiences. You definitely are not alone with this disease. Have you checked out the website: http://clfoundation.org

Judy

gramma · New User Joined: 19 Dec 2006 Posts: 6

Hi Judy, I'd be interested in that forum so would appreciate dates/locations if/when you know it's scheduled....thanks! My dermatologist called today....says it's not MF, that it's Psoriasis. However, after listening to different peoples personal experiences and reading official web sites, I'm reluctant to accept this diagnosis. Not that I want it to be MF...believe me...I don't, but my symptoms and photos of others w/early state MF....sounds/looks exactly like mine and I keep hearing how difficult it is to diagnose and how often it's misdiagnosed as Psoriasis or Eczema. I'm going to find out more about all of this tomorrow as I have a follow up consult w/derm. Right now, I'm thinking I'm going to ask him to treat me for the Psoriasis and then if it doesn't respond...I'll make an appointment w/the Mayo clinic team. That's my plan for now....I'll let you know. Thanks again for your support and information. I've already registered for the CTCL-MF listserv as you'd told me about it during our telephone converstation last week. gramma (aka Dorothy)

gramma · New User Joined: 19 Dec 2006 Posts: 6

Had my consult yesterday. I'd misunderstood the phone conversation. Turns out they're calling it Parapsoriasis...which has nothing at all to do w/psoriasis. It's a rare skin disorder that little is known about. It does have to do w/the immune system however the doctor said mine is not all messed up, in fact he's really not worried about me. I did some research about parapsoriasis and it does say that left untreated it might evolve into mycosis fungoides. So, I'm beginning a treatment of steroid cream and we'll re-evaluate it in one month. I will be watching closely for an improvement and/or changes and will want to stay informed about MF. I thank you very much for your support, wish you knew how much it helped calm my nerves! Take care.... gramma Dorothy

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