Woman blames infertility on long-term chemotherapy

A woman has spoken of her pain at not being able to have children, after years of what she understands was prolonged and unnecessary chemotherapy.

Elena Adams said she was put on temozolomide within days of being diagnosed with a brain tumour in 2016. Guidelines say the drug – which comes in tablet form – should be used on its own for up to six four-week cycles, usually over a period of six months.

But Mrs Adams, from Coventry, said she took it for 66 cycles under the care of University Hospitals Coventry and Warwickshire NHS Trust (UHCW).

The NHS Trust said it had reviewed and spoken to all patients who were receiving temozolomide treatment at the end of 2023.

UHCW has launched an independent inquiry after patients raised concerns about the prolonged course of temozolomide they were prescribed under the direction of Professor Ian Brown, who has now left the trust.

Mrs Adams said: "From what I know from the hospital, they've said I can't [have children] and that there's no chance for me.

"Because my egg count is so low from all the temozolomide. There's no chance of me having a child naturally."

She added: "How could they do this to somebody? I've wasted six years of my life on chemotherapy when I could've been living my life and I could have gone on to do things that I've always wanted to do."

Mrs Adams, from Coventry, said she was initially told she had a low-grade tumour and chemotherapy was not necessary.

But it was later upgraded and she said she was told she would be on temozolomide for the rest of her life.

She said she was warned about the potential damage the chemotherapy could have on her fertility but said she was not given an opportunity to freeze her eggs or treatment to protect them, despite initially being offered it.

Mrs Adams said: "I started chemotherapy, had radiotherapy but nothing ever happened about my eggs.

"When I did eventually go to see someone from fertility, I was told it was too late to do anything."

Temozolomide has a range of possible side effects.

It can cause loss of fertility, as well as joint pain, loss of memory, pneumonia and, in rare cases, secondary cancer and liver damage.

Mrs Adams was diagnosed with the bone condition osteonecrosis last year and now struggles to walk.

Michael Harrison – known as Jake - was on temozolomide for ten years after he was diagnosed with a terminal brain tumour in 2006.

His now widow Jo, from Leamington Spa, said her concerns were dismissed when she raised them with hospital bosses.

She said: "I used to say [to hospital staff] … I wasn't happy with the temozolomide.

"I thought it was causing him dementia. Which they poo poo'd 'absolute rubbish of course it's not, he'd probably go like that anyway', which was possibly true.

"But I just didn't feel being on these drugs for so long was doing him any good at all.

"I thought they were making his brain strange.

"It was very much like dementia. But compared to the dementia my brothers had, it was nothing like."

Law firm Brabners is representing 20 patients who believe they have suffered due to unnecessary temozolomide.

Paralegal Becky Addison said "It's very difficult to put a number on this right now but we do have a patient that goes back to treatment from 1998, so there is scope of 27 years where Professor Brown was using this prolonged treatment.

"We believe hundreds of patients may have been affected."

She added: "We understand one cycle of this treatment can cost £1,000. At the moment we have 20 clients. Do the maths. It's a lot of money and we believe there are a lot more patients out there who have been subject to that same treatment.

"How this fell under the radar at that trust is beyond me."

The University Hospitals Coventry and Warwickshire (UHCW) NHS Trust said the trust was committed to providing the best and safest possible care.

A statement said: "We can confirm we have comprehensively reviewed and spoken to all patients who were receiving temozolomide treatment at the end of 2023 to ensure appropriate support and care plans are in place.

"As there is an ongoing review process it would be inappropriate for us to comment further."

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