29 Nov 2024

In memory of Marsha Rayatt

Marsha Rayatt sadly passed away from the side effects of gruelling treatment for a rare type of leukaemia in 2023. She’s also experienced distressing and severe side effects from her earlier treatment. 

Forty-year-old Marsha, from Shefford in Bedfordshire, first noticed a tenderness on her chest in July 2020. Shortly afterwards a lump appeared. During the five months of tests she had before her final diagnosis, the lump grew to around 10cm across her chest. 

“It ended up looking like a pancake,” said Marsha. “Eventually biopsies from the lump were taken, and then a bone marrow biopsy. I was finally diagnosed with type of cancer called myeloid sarcoma – a tumour that often appears in people who have acute myeloid leukaemia (AML). This isn’t typical AML where bad cells are found in bloods and bone marrow. The tumour on my chest was growing off my sternum. If I didn’t have the tumor I wouldn’t have known I had anything wrong as my bloods showed no abnormalities and were as healthy as someone without cancer. I was one of only two people diagnosed that year at Addenbrookes University hospital in Cambridge.” 

A myeloid sarcoma is a solid tumour made up of immature white blood cells called myeloblasts. It is an outside-the-bone-marrow sign of acute myeloid leukaemia, meaning it is a solid mass of leukaemia cells that forms in tissues other than the bone marrow. It is extremely rare and even rarer to see as a primary diagnosis – it is more often found in relapsed cases. Myeloid sarcomas are usually not found in a blood test but once discovered lead to the diagnosis of acute myeloid leukaemia or other haematological transformations. They are so rare that even experienced leukaemia specialists have very often never seen one.   

Marsha, who worked as a part time kitchen assistant in a local care home, was diagnosed on 15th December 2020 and began treatment four days later. She was in hospital for about six weeks, away from her husband of 17 years, Andy, and children Sophie, who was 16 at the time, Rebecca, 13, and Joseph, 10. 

“I was on two chemo drugs and incredibly after a few days I could actually see the tumour going down,” said Marsha. “But the treatment was horrendous. I suffered really badly with sickness. I had very long hair, all of which I lost three weeks into the process. This was really hard to deal with. 

“I went in remission after six months of treatment and stayed in remission for nine months after that, but, unfortunately in February 2022, a routine bone marrow biopsy showed it had returned. I had FLAG-IDA chemo April 2022 to get me back in remission, which it did and then a stem cell transplant followed in August 2022. I had my sister’s cells as she was a 100% match.” 

During her eight weeks in hospital in 2022 for the stem cell transplant, Marsha ended up in intensive care with a heart rate of 242bpm, which medics struggled to get down. She had sepsis, and a number of other painful and difficult infections and problems. 

“It was touch and go at one point,” said Marsha. “I got a severe case of mucositis, a painful inflammation of the lining of the mouth and digestive tract which leads to pain and problems with eating. I continued to struggle with the long term affects of it on my sense of taste. I find this one of the most awful things. In January 2023 I had my second post-transplant bone marrow biopsy which came back negative. My hopes are that it stays like that and we have finally got rid of it once and for all. 

“The treatments given for leukaemia are so harsh on your body and come with some of the worst side affects, which can stay with you for the rest of your life. We need more ways and drugs to treat and cure leukaemia without all the horrendous side effects that come with it. 

“I didn’t have any of the typical leukaemia symptoms but would like to just say……if you have anything going on with your body that is different, get checked. You know your body, no-one else does. If you’re told its nothing, don’t take it, push for tests. You never know what they will find. Finding it sooner is key.” 

Sadly Marsha’s myeloid sarcoma came back in 2024 and in August she commenced another round of chemotherapy which was the same chemotherapy as Marsha had been given twice before. This round of chemotherapy triggered a toxic reaction in her brain called acute toxic leukoencephalopathy which then caused a complete loss of eyesight, taste, smell, movement and communication. Marsha lost her battle with leukaemia on 19th October at the age of 41. 

“Marsha was an absolutely amazing human being and kept as positive as she could during her various treatments while still being the best mum, wife, daughter, sister, aunty and friend anyone could wish for,” said Marsha’s husband Andy. “There were ups and downs but we got through tough moments of doubt and kept positive.”

“Marsha went through a really tough last four weeks of her life and it was so difficult for all the family because all we could do was be by her side while this disease took hold. Leukaemia UK does a fantastic job raising awareness and researching treatments with less side effects. It was the side effects of the treatment that eventually took Marsha’s life and if different treatment options are available in the future then more lives could be saved.”