A mother who spent 20 years trying various creams for her eczema when doctors told her she was living with a rare type of blood cancer.
Vivian Neal first saw an itchy rash on her body in her early 20’s and said doctors always told her it was eczema.
The 43-year-old was given a range of different creams to help and she would try to wear clothes that covered the patches.
“Doctors always thought it was eczema, but now, with the diagnosis, they realize it’s cancer,” Vivian told the Jam Press.
“It’s been getting worse over the years, but it’s hard to diagnose. I’ve lost count of the different creams I’ve been given over the years.”
Vivian, who lives in Dunfermline, Scotland, said the spread of the patch also affected her confidence.
“If I was wearing a skirt or dress, I always wore tights. I never showed my bare legs because they were the worst.”
But when a patch turned ‘brown’ in February 2018, Vivian began to get upset and decided to book her GP to see.
Her doctor was upset by the changes and Vivian was referred to a dermatologist at Queen Margaret Hospital for a biopsy.
Tests revealed that she was living with mycosis fungicides, a type of blood cancer called catnip T cell lymphoma.
He said: “I was shocked when I was told I had cancer and then I was told it was a rare incurable blood cancer.
“It took me a long time to come to terms with that.
“When you hear about cancer, you automatically think the worst, and I thought my life was over in the 40’s.”
Although the cancer is not terminal unless the tumor grows on the patch, Vivian will live with the cancer for the rest of her life.
She will be monitored and her symptoms will be managed, and doctors say she could live another 30 years.
What is Mycosis Fungoids?
Dr. Fiona Child, Consultant Dermatologist who treats patients with mycosis fungicides.
Mycosis fungicides are a rare type of T cell lymphoma that involves the skin.
It can occur at any age but is most often diagnosed after the age of 50.
It often mimics other conditions such as eczema and psoriasis and can sometimes delay diagnosis.
It is usually accompanied by dry, itchy patches of skin with irregular shapes.
Patches can turn into thick sores, called plaques, and sometimes nodules or tumors, which can break down into painful ulcers.
In a small number of patients, the skin may turn red on all sides.
Although it is a lymphoma, it is an incurable disease in most people, does not spread beyond the skin and is associated with a normal life span.
However, in a minority of patients it can become more aggressive and eventually spread beyond the skin.
In people with severe disease, where the skin barrier is damaged, the risk of significant and fatal infections may increase.
The goal of management is to improve symptoms and control the disease because there is currently no cure.
Treatment can clear up quickly, but it usually happens again. In the early stages, skin therapy is preferred and includes topical steroid creams or ointments and phototherapy (ultraviolet light therapy).
Low doses of radiotherapy can also be used for individual lesions and can be used to treat the entire skin surface (total skin electron beam therapy) in people with more extensive disease.
If skin treatments fail to control the disease effectively, other treatments may be needed, from immunotherapy (drugs that stimulate the body’s immune system to fight lymphoma cells) to chemotherapy. Can be up to
There are currently a number of targeted antibody therapies that are being developed or diagnosed in clinical trials.
Many research groups around the world are working together to understand the causes of mycosis fungicides and why it is more aggressive in some patients.
Ongoing research will lead to more effective management strategies and better outcomes for our patients.
He said: “This cancer has been classified as a slow cancer but knowing that tumors are possible is still very scary. It always stays in my mind.”
In 2019 she was given UVB light treatment but had a severe allergic reaction and was waiting to start an alternative called PUVA, which included taking a drug called Psoralens (P) and then applying ultraviolet radiation to the skin for a long wave. Includes exposing.
Unfortunately, his appointment was canceled due to the corona virus epidemic and he was told that he would be monitored until after the epidemic.
By early 2021, her skin was deteriorating, covering 90% of her body, and although light therapy could not proceed, she was offered a chemotherapy tablet called methotrexate, which is commonly used to treat arthritis. Used for inflammation
“It helped with the inflammation on my skin but it made me feel really bad.
“I took six pills a week and it made me feel very nauseous, I had severe headaches, extreme fatigue, thinning hair and swelling and bleeding gums.
“I have to have my blood tested every week because methotrexate can damage your liver,” he said.
Vivian knew she was in danger of losing her hair and decided to shave before she could be treated.
He said: “I did this to raise funds for Moore in Pittencreiff Park where I volunteered as an assistant Peafowl Warden because I wanted to make one of the negatives positive and we 00 0000 Submitted
“I went into a deep depression for about six months in early 2019 because I had surgery on my back and my sciatica was cured.
“The peacocks rescued me in Pittencreiff Park. The birds were my therapy and the volunteers have been amazing with me.”
Unfortunately, the chemotherapy did not work as well as doctors had hoped, and Vivian was offered a type of radiotherapy called Total Skin Electron Beam Therapy at Freeman Hospital Cancer Center, Newcastle.
She is being treated like an outpatient, which has cost Vivian a lot of money, including both hotel and travel expenses.
She traveled to Newcastle earlier this month and will stay for two weeks.
She has been raising money for additional expenses, but says any money she has left will go back to Moore in Pattencruff Park.
“By now, I’m starting to feel tired, sick and my skin is very painful and very itchy,” she said.
“I’m never going to ask for help. I’m always the one who offers help but I felt I had no option but to travel to get my treatment.
“I was overwhelmed by the answer I gave. It really made me shed tears to see how generous people are.
“I haven’t had the easiest life in the last four years and it just amazes me that there are lovely people out there who would do that for someone.”
Vivian hopes the treatment will reduce more than 90% of her body patches and slow the growth of cancer.
“By doing this, I will reduce fatigue, itching and confidence in my body and achieve a better quality of life that I have not done in a long time,” he added.
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