Connect
Cutaneous T-cell lymphoma consistent with mycosis fungoides
I just received news today from a scrape biopsy that I have a rare skin lymphoma. My dermatologist thinks it is early stage and that light therapy will become the form of treatment to keep it under control. I previously was diagnosed in 1988 with Hodgkin’s Disease/Lymphoma stage IIB at age 25. I am now age 62. I just registered here to put out a feeler if there are others out there experiencing this same condition for which there is no cure. Thanks in advance for anything that you are willing to share… I greatly appreciate it! 🙋🏼♀️
Like
Helpful
HugInterested in more discussions like this? Go to the Blood Cancers & Disorders Support Group.
Connect
I was diagnosed when i was 70. The dermatologist initially thought is was eczema. I have tried the light therapy and a steriod cream but has not stopped it. I had an appointment with the VA and I have been to Mayo who confirmed what the dermatologist recommented. My next option is the Radiation therapy at Mayo. I discussed with the Veteran Service Officer and found that this is one of the condition from Agent Orange used in Vietnam. /I have qualified for a disability
-
Like -
Helpful -
Hug
3 ReactionsWelcome to Connect @lancasterva and @cessnaman. Looks like you’re both sharing a similar diagnosis of Cutaneous T-cell lymphoma with mycosis fungoides. There are several members in the forum who also have Mycosis Fungoides such as @shari715 @dws1968 @josettecedo @sherriesalinas @mkmann @bradders @kbirt @beeclee. You can meet them, and others in this discussion:
Diagnosed with Mycosis fungoides. Don’t understand what to expect? https://connect.mayoclinic.org/discussion/i-was-diagnosed-with-mycosis-fungoides-dont-understand-it-and-what-t/
@cessnaman. Thank you for your service to our country but I am sorry to hear you were a victim of Agent Orange. My brother was too. He passed away at the age of 27 in 1969 after being doused with the chemical. Back then the army disavowed any correlation between Agent Orange and Hodgkin’s Lymphoma or any blood cancers. I am relieved for you that you’re being recognized and allowed to claim disability.
Wishing you both success with your respective treatments.
@lancasterva, have you begun the light therapy yet?
I am new to this forum, saw your post & will share my experience. I have been dealing with CTCL manifesting as CD30+ lymphoproliferative disorder and mycosis fungoides, diagnosed 9 years ago. Topical clobetesol has helped but during this time, I have needed cycles of methotrexate (mtx) up to 20mg. It resolved but does wax and wane and I am in another "flare." Restarted mtx so will see how it does. My doctor never suggested phototherapy. I hope this helps. Each person's journey is a little different. Best wishes to you.
Also want to thank you for your service! Best wishes for successful treatment. Another option my doctor brought up was radiation. We decided to do methotrexate, hopefully it resolves