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'Stem cells saved my life when chemo didn't work'

Student battling blood cancer urges people to become donors

22 year old Thomas Cafolla has leukaemia and is currently in remission but has come through a very tough couple of years. Pic Colm O'Reilly 01-08-2019 Story Stephanie Bell.
22 year old Thomas Cafolla has leukaemia and is currently in remission but has come through a very tough couple of years. Pic Colm O'Reilly 01-08-2019 Story Stephanie Bell.
22 year old Thomas Cafolla has leukaemia and is currently in remission but has come through a very tough couple of years. Pic Colm O'Reilly 01-08-2019 Story Stephanie Bell.
Thomas and Michael Cafolla

By Stephanie Bell

A Co Down student recovering after a two-year battle with blood cancer is appealing for people to join the stem cell donor register.

Thomas Cafolla, from Newtownards, endured numerous treatments for Hodgkin's lymphoma, only to be told late last year nothing was working.

The 23-year-old faced the terrifying prospect of palliative care, with a stem cell transplant his only hope.

As the search for a match got under way, his distraught family were desperate to help, so they issued a public appeal for donors to come forward.

As a result, more than 5,000 people joined the Anthony Nolan Trust donor list.

Thomas had his transplant in January and has since been told his cancer is finally under control.

However, with his body still recovering from the rigours of heavy-duty chemotherapy, he has to wait until January to see if he is in remission.

22 year old Thomas Cafolla has leukaemia and is currently in remission but has come through a very tough couple of years.
22 year old Thomas Cafolla has leukaemia and is currently in remission but has come through a very tough couple of years.

"I try not to think about it," Thomas says. "When I have a scan it is really worrying and I get nervous as there have been so many setbacks.

"I am just hoping to get some sort of normality back and maybe go back to uni in September.

"I wouldn't be here today without a stem cell transplant. I owe my life to an anonymous donor, but only 2% of the population are on the register.

"We have worked with the Anthony Nolan Trust to raise awareness. Apparently, donors in the 16-to-30 age group offer the best results in terms of recovery, so I would appeal to people, especially young people, to consider joining the register."

Thomas had just begun an exciting new chapter in October 2017 when he was diagnosed with cancer completely out of the blue.

He was studying for a degree in international hospitality management at the Ulster University and had just started a year's placement at a hotel in London, where friends of his were living.

22 year old Thomas Cafolla has leukaemia and is currently in remission but has come through a very tough couple of years.
22 year old Thomas Cafolla has leukaemia and is currently in remission but has come through a very tough couple of years.

Five weeks after arriving in the city, he was told the devastating news he had blood cancer.

"I was having night sweats and feeling more tired than usual, which I put down to working long hours in the hotel," Thomas says.

"Then I got a lump on my collarbone and started looking stuff up. Mum came over and took me to a walk-in hospital that sent me immediately to a university hospital, where I was diagnosed.

"It was pretty hard to believe. I kept thinking somebody was going to say they had got it wrong. It took a while for it to sink in."

Thomas was told he had stage three Hodgkin's lymphoma, the most common type of cancer in the under 30s and usually very treatable.

There was an optimistic prognosis and he immediately began chemotherapy, with doctors confident it would kill the cancer cells.

22 year old Thomas Cafolla has leukaemia and is currently in remission but has come through a very tough couple of years.
22 year old Thomas Cafolla has leukaemia and is currently in remission but has come through a very tough couple of years.

However, after the treatment finished in January of 2018, it was discovered the disease had not responded to the treatment.

"Everyone had said the cancer was really easy to treat and that I could be back in London within four months, so it was really shocking to hear the chemo didn't work," Thomas says.

"They then gave me a really intensive type of chemo, which I had to stay in hospital for. It made me very ill and I lost my hair."

Marie and Michael Cafolla with their son Thomas in Newtownards on September 17th 2018 (Photo by Kevin Scott for Belfast Telegraph)
Marie and Michael Cafolla with their son Thomas in Newtownards on September 17th 2018 (Photo by Kevin Scott for Belfast Telegraph)

The second round of chemo was so heavy-duty and made him so unwell that he was left with what doctors call anticipation sickness.

Ever since, just getting in the car to go for a hospital appointment provokes a feeling of nausea - a psychological scar from the trauma of his treatment.

Unfortunately, the second round failed to work. It was at this point that medical staff realised Thomas's cancer was resistant to chemotherapy and that he would need a stem cell transplant.

The first option was to test his two sisters, Anna (26) and Sophie (20), and brother Louis (21), who were all devastated when they proved not to be a match.

As the search for a donor continued, Thomas was put on antibody treatment to try and contain the cancer. Ready for the transplant in August, the family was overjoyed when a match was found.

However, there was another blow when the donor was deemed medically unfit to donate.

As time passed, Thomas became too ill to undergo a transplant, which at that point was his only hope of survival.

His father, Michael, a well-known businessman who runs Cafolla's Cafe in Newtownards, was at his wits' end.

"In October they got what is called a mismatched donor, which was a nine out of 10 match, but Thomas was so ill it was felt there was no point in going for the transplant as it wouldn't work," he says.

Michael Cafolla with his son Thomas at their cafe Cafolla's in Newtownards. 22 year old Thomas has leukaemia and is currently in remission but has come through a very tough couple of years. Pic Colm O'Reilly 01-08-2019 Story Stephanie Bell.
Michael Cafolla with his son Thomas at their cafe Cafolla's in Newtownards. 22 year old Thomas has leukaemia and is currently in remission but has come through a very tough couple of years. Pic Colm O'Reilly 01-08-2019 Story Stephanie Bell.

"It just felt that the cancer wasn't going to go away. At that point they were talking about palliative care and managing our expectations. It was scary.

"They then put Thomas on a new treatment that had only been made available in the previous 12 months to try and get him into remission to be able to have the transplant. You really don't expect at his age to run out of options so quickly."

Meanwhile, the cancer in Thomas's body had spread through his lymphatic system and into his chest.

He started the new treatment in November and, just before Christmas of last year, a scan revealed that it was working.

Thomas was well enough to travel to London for his stem cell transplant on January 23 of this year, but he endured a horrendous six days when his immune system had to be wiped out to allow for the new immune system from his donor to be transplanted into his body.

Since then, the cancer appears to have been kept at bay, but it will be a full year before doctors can say for sure that he is in remission.

For now Thomas is focusing on his recovery and hopes to return to his studies, but he also wants to helps others who find themselves in his position.

"The fact I haven't relapsed is absolutely amazing and things are now looking a bit more positive," he says.

"I really would urge people to sign up to the register. All it takes is a simple swab and it was my only chance. I might not be here today without it. It is a simple thing to do to save a life."

For someone with blood cancer, a stem cell transplant from a matching donor could be their last chance of survival.

Your support could help find their matching stem cell donor and give that person, their family and their friends a second chance.

Joining the Anthony Nolan UK stem cell register couldn't be easier.

  • You can join online. Fill in the application form and the charity will send you a swab pack in the post for you to complete and send back, and you will be added to the stem cell register.
  • You'll stay on the register until you are 60. If you ever come up as a match for a patient, the charity will be in touch straight away.
  • The charity supports you at every stage of your donation and will arrange everything, from travel to accommodation.

There are two ways you might be asked to donate: 90% of people donate via their bloodstream and 10% have their stem cells collected via their bone marrow while under general anaesthetic.

For more information, visit www.anthonynolan.org

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