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Myeloma Survivor Loses Three Inches In Height And Breaks Back In 13 Places

Antoinette Carr shares her story to raise awareness of undiagnosed myeloma in the UK

A woman’s incurable blood cancer left her back broken in 13 places, causing her to lose three inches in height.

Antoinette Carr, 50, was diagnosed with myeloma in 2012 after suffering from fatigue.

Over the years, her cancer has returned seven times and caused her spine to fracture in 13 places.

Myeloma cells grow in the bone marrow and bone causing local bone damage or generalized thinning of the bone which has resulted in Antionette going from 5′ 2″ to 4′ 9″.

After reaching her seventh round of chemotherapy and exhausting all other treatment options, Antionette signed up to a new drug trial – belantamab mafodotin – which treats multiple myeloma.

She was then told she was in remission in December 2022 where the signs and symptoms of your cancer are reduced.

Antoinette, a former support worker, from Enfield, London, said: “After maternity leave, I kept feeling more tired than usual.

“I thought it might be postnatal depression then I just put it down to being a working mum with a young baby.

“I had a bone marrow biopsy, and they told me I had myeloma – it was really, really hard.”

Antoinette had only just returned to work from maternity leave in 2012 when she started feeling completely exhausted.

She consulted her GP, who ordered blood tests and found the results concerning.

Antionette Carter in the hospital. (Myeloma UK via SWNS)

Antoinette was diagnosed with MGUS – a benign condition which had just a one per cent chance of developing into cancer like myeloma in December 2011.

But in February 2012 after her initial MGUS diagnosis, she was told the condition had progressed to myeloma.

Antoinette said: “My son, Reuben, 13, was a baby. I remember going to the hospital with my husband, Richard, 52, and my son was in the buggy.

“All he’s ever known is me being ill. My daughter, Savannah, 17, was four at the time. It’s been pretty tough.

“Initially it didn’t really sink in for us. I just tried to continue as normal.

“I’m glad to have got this far. I never thought I would see them grow up.”

Antoinette’s GP pushed for a referral for more tests and a bone marrow biopsy despite being told by the hematology department at Whipps Cross Hospital, London not to worry.

As Myeloma Awareness Week (2127 June) gets underway, Antoinette is teaming up with charity Myeloma UK to highlight that there’s currently 851 people living with undiagnosed myeloma in the UK.

As part of the campaign, the 50-year-old is urging the public to learn the tell-tale symptoms, rule themselves out and spread the word about myeloma.

After lockdown started, her cancer started to eat away at her vertebrae causing her spine to fracture in four places.

Antoinette spent three weeks in the hospital and was sent home in a back brace.

Despite being on strong painkillers and eventually begging her orthopedic doctor in Whitechapel, London, to see her in person, she was told over the phone that her pain would eventually subside.

But, by the time she was rushed to St Bartholomew’s Hospital, London, less than a week later, she had nine more back fractures.

She then had to undergo kyphoplasty surgery – that injects cement into broken bones, but the damage to her spine has left her in constant pain and with limited mobility.

Antoinette said: “I couldn’t have avoided getting those four back fractures at the start, but what could have been avoided was the situation getting a lot worse.

Antionette Carter pictured in a car. (Myeloma UK via SWNS)

“I was taking more and more pain relief, but it wasn’t doing anything, and my back was fracturing and fracturing and fracturing.

“But because of the pandemic, the care wasn’t there. So, I’m really not surprised that fewer people were diagnosed with myeloma during the pandemic.

“I was just left to get on with it. It knocked me mentally knowing that it could have been avoided.”

She added: “It’s only when my back fractured that it really started affecting my family because it affected my mobility.

“It’s when it kind of hit me. I had to stay in the hospital a lot more.

“I can’t wash my hair myself; I’ve lost three inches in height, and I can’t drive. My husband had to give up work to look after me. I have a permanent curve in my spine.

“But I just deal with the here and now. What’s the point in worrying.

“Worrying is like carrying an umbrella with you all the time in case it rains. I just try to live for the moment.”

Antoinette had reached her seventh round of chemotherapy and exhausted all treatment avenues when she signed up to a clinical trial for a new drug – belantamab mafodotin – in November 2021.

It is a medication for the treatment of relapsed and refractory multiple myeloma.

Antoinette said: “This is the only treatment that’s kept me stable for this long.

“Up until I was put on this trial, I had run out of all standard treatment options, and I feel like I’ve hit the jackpot by being on this treatment.

“I’m glad to have got this far.

“It’s saving lives, and it’s giving me more time until, hopefully, they find a cure.”

 

Produced in association with SWNS Talker

Edited by Daisy Atino and Deborah .C. Amirize

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