'Years of unnecessary chemotherapy stole my youth'

"A brain cancer patient who says he was prescribed chemotherapy tablets for 16 years, even though NHS guidelines say they should only be taken for six months, has said he feels his youth was stolen from him. Jonathan Jones was diagnosed with anaplastic astrocytoma in 2007 when he was 17 and took temozolomide tablets until November 2023, when he was 33. Since he has raised his case with lawyers, more than 30 other brain cancer patients at University Hospitals Coventry and Warwickshire (UHCW) have raised similar concerns."

"Mr Jones, now aged 36, said: "I lost my freedom, I couldn't do anything at the time. I had 16, 17 years taken away from me." The landscape gardener from Lichfield, Staffordshire, said he had had dental problems, joint pain and anxiety issues since being diagnosed. Talking about the impact on his life, he said: "I was off [work] every single month for seven days and I couldn't get employed, so financially that was a problem. The pain I suffered at home I'd stay in bed, I'd have panic attacks. Sickness, tiredness. I didn't really go out much. It caused a lot of stress for my family as well." Mr Jones was told he would need to stay on his tablets to stay alive, and when he questioned the treatment, he said the reply was: "Do you want to die? If you don't carry on taking the chemo, you'll die.""

Jonathan Jones was diagnosed with anaplastic astrocytoma at 17 and took temozolomide tablets from diagnosis in 2007 until November 2023, about 16 years. He reports dental problems, joint pain, anxiety, repeated monthly sickness absences and severe personal and financial impacts linked to prolonged treatment. He says clinicians told him continued chemotherapy was necessary to stay alive and that stopping would be fatal. NHS guidance recommends temozolomide post radiotherapy for a maximum of six cycles, typically about six months. More than 30 other patients at UHCW have raised similar concerns, and the trust commissioned an independent inquiry while clinicians face investigation.

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