Anyone have Cutaneous T Cell Lymphoma?

About 6 months ago I was diagnosed with Sezary Syndrome, a rare form of T-Cell Lymphoma. First and most prominent symptom was scaling of hands & feet , upward spiral of White blood count and excessive itching. First line of treatment was oral dosage of methotrexate & ECP, a blood treatment process. The drug was later changed to Chlorambucil. With slow results my future may involve IV dosing with brentuximab & some radiation.
Very much like to hear from others with Sezary & their treatment success

Wow. I am so sorry. My dermatologist noticed something strange on the back of my leg during a biannual routine checkup. I think he was able to spot the difference because he sees my skin often. I was shocked with the diagnosis. I saw an oncologist who did PET scan and blood work. I was so happy it was stage 1. I am doing UV radiation 3 times a week. My doctor was amazing and worked with my insurance for me to purchase the equipment for my house. None of this has been cheap but now I am set up it should be okay. This is the second time I have had cancer - I had a non-Hodgkin lymphoma. This involved chemo and radiation 35 years ago. I was not happy with another cancer diagnosis but at least it is stage 1 and not stage 3. I know that my Cutaneous T-cell lymphoma will most certainly require chemo, surgery, radiation. I know the oncologist could not believe I was only Stage 1. It is very unusual. What you describe is the expected course. Hang in there. Cancer is not fun but if you have a good team of doctors, excellent health insurance, family, and friends for support it does make life slightly easier. My insurance does not cover care at Mayo. Feel free to stay in touch.

It took my dermatologist team 12 years to fiqure out that i had t-cell lymphoma. Thanks to a Dr. that finally did a bioposy that was sent to the Mayo clinic in 2020. I underwent radiation on two tumors and eventually went through total body radiation in October of 2020. All was good for a few years, but now it is back. It has come back to my face and scalp especially.

i

My sister got her oncologist appointment, so happy she did not have to wait too long. She will have 5 radiation tax to her arm. Needs prayers please. Thank you so much for touching my heart with kind and caring replies.

Cindylb

My sister was just diagnosed with cutaneous T cell lymphoma last week.
Her specialist did a total body check of lymph nodes with negative results. Make sure you get your lymph nodes checked! She has been referred to an oncologist but does not have an appt yet. She is also having a scan but I am not sure what type of scan. Make sure you read shari715 comment, it is very informative.
All the best! Debby

shari715

Thank you for sharing your story with me, I am so pleased your treatments went well. My sister will see an oncologist soon. She is also having a scan but she does not remember what kind of scan. She also has an excellent dermatologist who did a total body check of lymph nodes with negative results.
Please let me know how you make out and if you need further treatments. Sometimes it is a battle we go through alone. All the best.
Debby

Colleen,

Thank you so much!
I am worried but okay. Thank you so much for asking. I am an RN so my imagination runs wild.
My sister is waiting to hear from the oncologist’s office, soon I pray, otherwise I will try to intervene.
The specialist did a total body check of lymph nodes and stated he did not suspect anything. He also wants a second opinion on the biopsy.
Thank you for transferring me to the cancer group.

Sincerely
Debby

I was diagnosed with Cutaneous T-Cell lymphoma by my dermatologist. My excellent dermatologist noticed an area on the back of my leg that had “changed”. On biopsy it was diagnosed as mycosis fungoids T-Cell lymphoma. I began UV treatment immediately. I have just had a PET scan and will see the oncologist next week - three months after the initial diagnosis. According to the doctors “this is slow growing and will not kill me”. As a side note in 1988, I was diagnosed treated with chemo and radiation for non-Hodgkin lymphoma. So 35 years later a different lymphoma. The oncologist is unclear if there is a connection as CTCL is rare cancer. I will know next week if I need other treatments now.

Welcome @somde. As @becbuddy suggested, I have moved your post about treatments for cutaneous T-cell lymphoma to this exisiting discussion in the Blood Cancers support group:
- Anyone Have Cutaneous T-Cell Lymphoma?
https://connect.mayoclinic.org/discussion/cutaneous-t-cell-lymphoma/
I did this so you can read previous posts and connect easily with other members like @shari715 @madisong @cindylb @dee081772 @grandpabob and others.

Somde, luckily there are many treatments are available for people with cutaneous T-cell lymphoma. Which treatments are best for your sister will depend on her particular situation, including the extent or stage of the lymphoma. Most people receive a combination of treatments for cutaneous T-cell lymphoma. Read more here: https://www.mayoclinic.org/diseases-conditions/cutaneous-t-cell-lymphoma/diagnosis-treatment/drc-20351057

It is hopeful that the cancer was caught early since it was not detected in the lymph nodes. When does your sister see the oncologist to learn more? How are you doing?

Hello @somde I think your questions will be better answered in the Cancer Support group. I will ask a moderator to move your question so you can meet others and participate in the discussions