Aussie patient reveals 'excruciating' cancer side effect: 'Crying every day'

A Sydney woman battling stage 4 cancer has vowed to help others after falling ill with an extremely painful — yet very common — side effect of treatment.

Melinda Restrepo began experiencing flu-like symptoms in November last year and decided to visit the doctor after a pesky cough continued to linger for more than five months.

She was initially prescribed asthma medication, cough syrup and antibiotics, but her symptoms continued to get worse.

After three doctor visits, the 41-year-old told Yahoo News Australia her husband Andres Restrepo suggested she change medical practices.

Melinda with her husband Andrews on their wedding day and after undergoing cancer treatment.
Melinda was diagnosed with a rare and aggressive type of cancer in March, five months after first visiting doctors. Source: Supplied

“I then went to an amazing doctor who didn’t leave any stone unturned,” she said, adding that she quickly underwent blood tests and a chest x-ray.

But it wasn’t until she had a CT scan done that the cause of her deteriorating health was revealed — Mrs Restrepo had a grapefruit-sized cancerous tumour in her chest.

It was then she was diagnosed with mediastinal large B-cell lymphoma, a rare and aggressive type of B-cell non-Hodgkin lymphoma.

Because several doctors had failed to diagnose the problem, Mr Restrepo said his wife had “lost a lot of time”.

“It was stage 4 already,” he told Yahoo News Australia.

The 41-year-old — a Switzerland native who is now an Australian citizen — was promptly rushed to the hospital where she immediately started chemotherapy.

“It was incredibly difficult. My body was pretty raw I would say because chemotherapy is like putting an atomic bomb in your body,” she said.

Melinda with her husband Andrews. Source: Supplied
Melinda said chemotherapy is like putting an 'atomic bomb' in your body. Source: Supplied

Painful symptom leaves woman 'crying every day'

Mrs Restrepo said she struggled after the first cycle of treatment caused her to lose her hair, but the side effects only got worse, including problems with her digestive system and losing feeling in her fingers.

But by far the most painful was oral mucositis — an extremely painful condition that is also one of the most common side effects of chemotherapy and radiotherapy.

Symptoms, which can last for weeks or months, include a swollen mouth and gums, painful ulcers in the mouth and difficulty eating or swallowing. It can occur anywhere in the gastrointestinal tract.

“I was getting these super weird pains in my mouth. I could hardly open it to eat or speak and developed excruciating ulcers,” Mrs Restrepo said, adding that she developed the condition after her chemotherapy dosage was doubled on the fourth cycle.

“I was crying every single day.”

Melinda and her husband with shaved heads. Source: Supplied
Melinda said the most painful side effect of cancer treatment by far was oral mucositis. Source: Supplied

Because she was only able to consume soup or smoothies, the 41-year-old lost 5kg, becoming underweight.

After also developing a fever, Mrs Restrepo was admitted to hospital where doctors found she had also developed a life-threatening infection.

“I needed a blood transfusion, IV hydration, a liquid diet and opioid-based painkillers. It was horrific,” she said.

“[Oral mucositis] is one of the most severe bottlenecks in cancer treatment, placing patients at extreme risk of infection and sepsis. It causes long delays in treatment which may lead to adverse outcomes, even death.

“Some patients drown in their saliva because they can’t swallow.”

Soon after, she contracted Covid, ultimately halting her cancer treatment for about a month.

Couple vow to help other cancer patients

Desperate to ease the pain, Mrs Restrepo and her husband began researching possible treatments for oral mucositis and found Photobiomodulation — a form of light therapy that can alleviate inflammation, help heal wounds and stimulate the immune system.

They then spoke to an oral surgeon at Melbourne’s Peter McCallum Cancer Centre who uses the technology and encouraged them to invest in a THOR Laser, which the couple say is the only medical device registered in Australia, the US and UK for treating oral mucositis.

They are currently only available at three hospitals in Australia — Peter MacCallum, Sydney Adventist Hospital and Mater Hospital Brisbane, the couple says.

In June, Mr and Mrs Restrepo were able to purchase a second-hand device and rush it from London to Sydney for the hefty price of $23,000.

Melinda using the THOR laser to help with her oral mucositis. Source: Supplied
Desperate to ease the pain, Melinda and her husband purchased a second-hand THOR laser to help with her oral mucositis. Source: Supplied

Since using the “lollipop” for 10 minutes twice a day, Mrs Restrepo said not only has her pain reduced, but so have the incidents of mucositis. She has also been able to eat and maintain her weight and strength to fight the cancer, which sadly remains present.

Inspired by its positive impact, the couple have vowed to help other cancer patients battling the same problem.

They’ve teamed up with The North Foundation to help raise money for a THOR Laser — which costs roughly $30,000 brand-new — so patients at the Royal North Shore Hospital can access it.

The couple have already spoken with physicians and nurses at the hospital, the latter of which have agreed to undergo certification to administer the device, they say.

They also hope to raise more awareness about oral mucositis.

“When I was in hospital I saw many, many patients that had to have feeding tubes because they have mucositis and can’t swallow and eat properly, so if we can help these guys get stronger quicker, it’s a better prognosis,” Mrs Restrepo said.

September 15 is World Lymphoma Awareness Day, for more information about how to get involved in Australia, click here.

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