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Diagnosed with Mycosis fungoides. Don’t understand what to expect?

Blood Cancers & Disorders | Last Active: May 2 7:18pm | Replies (24)
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@ccarter006

I was just diagnosed today with CTCL. I am 46 and have some co-morbidities (psoriasis, Factor V Leiden with DVT history), but am overall pretty healthy! I meet with my PCP in two weeks and need a dermatology referral then since my health insurance is changing. What a mess it is to navigate the system to ensure good care. Looking forward to reading about the experience of others and how you manage CTCL in daily life.

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Replies to "I was just diagnosed today with CTCL. I am 46 and have some co-morbidities (psoriasis, Factor..."
Lori, Volunteer Mentor | @loribmt | Apr 30 9:45am

Welcome to Connect, @ccarter006! It can be a relief to speak with others who share a similar diagnosis to realize you’re not alone. There are a number of members who also have Cutaneous T-cell lymphoma-CTCL. You’ve already popped into this conversation with @josettecedo @beeclee @aloha2012 @shari715 where they share their experiences.
More CTCL discussions can be found by typing CTCL in the search bar. https://connect.mayoclinic.org/group/blood-cancers-disorders/?search=CTCL#discussion-listview

From my understanding there are several different types of CTCL, with Mycosis fungoides being the more common of this rare type of lymphoma. Were you diagnosed specifically with mycosis fungoides?
Since CTCL is a form of lymphoma, and you have a history of Factor V Leiden which is a blood disease, are you already working with a hematologist oncologist? They may also be able to discuss your CTCL.
Are you having switch doctors because of your insurance change?

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aloha2012 | @aloha2012 | May 2 7:18pm

Hey, we recently got a home lite box thru our insurance company with the help of our derm. We have lots of prescription creams and ointments. It gets to be really frustrating trying to figure out what helps. Recently we discovered a FB company that sells products made with goat milk. We buy unscented goat curds which you use in your bath water. Also found Amish farm soap which is quite soothing. Not sure if I am allowed to name the two companies but can message you if you like. Still using prescription meds though. What type of is your CTCL ? Mycosis Fungoides lives here.

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