A Skin Lymphoma Diagnosis After 20 Years of Suffering
- Vivian Neill, 43, started to experience what she thought was eczema at the age of 21, but over time the rashes became more aggressive and began to spread.
- She went to a doctor in 2018 after the rash started to turn a different color and learned she had a rare form of skin lymphoma knows as cutaneous T-cell lymphoma.
- Most skin lymphoma is incurable but only terminal in rare cases. Patients are often treated with chemotherapy or radiotherapy to dull the effects of the rash from disease.
That is how Vivian Neill, 43, describes the rash that has covered her body for the past 20 years.
Read MorePhysical Anguish of Skin Lymphoma
This is one of the very few lymphomas that are found in the skin. There is no cure for the disease at this time, and it can be fatal if tumors start to develop.“The condition affects the skin; it looks like eczema, but what it does is that too many white blood cells are getting produced in my body, but it’s worse than eczema. It inflames,” Neill said of the rash in an interview with Daily Record.
“I’ve got it over 90% of my body, I’ve got red patches everywhere, my whole back is just a big massive patch, it inflames like hives so it can be really, really sore to the point that I can’t even put clothes on.”
Mental Anguish of Skin Lymphoma
Neill said that she struggled in the wake of her surprise diagnosis, in large part because her doctor informed her that she would be living with this condition for the rest of her life.
“I was in a very, very bad place after I was diagnosed, and I was very depressed,” explained Neill of her mindset after the skin lymphoma diagnosis. “I didn’t even bother coming out of my bed for about six months, but then I decided to give myself a kick up the butt.”
Neill began taking walks to get out of the house and found herself often visiting the peacocks that reside in a local park. She now volunteers at the park, allowing her to spend her free time with the majestic birds.
“I can’t work anymore; I’m not able to have a relationship for the last five or six years because I’ve got to concentrate on myself,” pointed out Neill. “Sometimes I have good and bad days, the fatigue can hit me like a wall, sometimes I stay in bed for four or five days cause I feel sick.”
She said that fatigue along with itching and hot flashes are the most difficult things to deal with, especially because they often come without warning.
Treating Skin Lymphoma
Neill is taking an oral chemotherapy treatment and will soon be undergoing radiation to dull the effects of the rash caused by her skin lymphoma.
The procedure is called Total Skin Electron Beam Therapy (TSEBT) and it works to kill the white blood cells that are causing the rash that covers her body.
Neill does not deny the reality of the situation, though, noting: “I’m still going to have the cancer, I’m always going to have the cancer, but I want it to be monitored and managed and not cause me as much pain.”
TSEBT is a form of radiotherapy that treats the entire skin surface using low-energy beams generated by a linear accelerator.
The beams can only penetrate the skin, meaning that there is no risk of damaging any of the internal organs.
The treatment has successfully treated patients with cutaneous T-cell lymphoma for some time, but it is often used as a last resort after all other treatment options have been exhausted.
How Focused Radiotherapy Treatments Work
Advocating For Women
Neill is sharing her experience to help other women who may be unsure about symptoms, reminding them that they know their bodies best.
“You will know your own body, and if you feel like something is off, like I did for years, push the doctors that little bit more and don’t just take their word for it that their diagnosis is right just because they are from the medical profession,” stressed Neill.
“I am living proof that docs can be wrong for many years, and I am just glad that one (doctor) that took that little bit more time to look at my skin and sent me for a biopsy rather than just flinging more cream at me without even looking my skin over.”
When Shelia Johnson was diagnosed with cutaneous T-cell lymphoma, she headed straight for the kitchen.
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