'I feel grateful that I am where I am' – Two women share their experiences of immunotherapy

Tara Mohan, from Drogheda, was 21 in 2014, living in Brussels, Belgium, where she was doing an internship at the EU and had applied for a job in Luxembourg as an Irish translator. As part of the job application, she was sent for a routine medical, where a blood test showed her white cell count to be very high. “They just thought it was an infection at that stage,” Tara recalls, “but then the X-ray of my chest picked up a tumour near my heart.

“I hadn’t noticed anything,” she continues. “I was 21 and doing what 21-year-olds do: going out all the time, not eating healthily; if I was tired, I put it down to my lifestyle. At times, I would wake up with a rash on my legs that would fade after an hour or so. I thought I was allergic to something in the apartment I was living in.”

Tara’s father came out to Brussels and accompanied her through more tests. A follow-up CT scan showed that the tumour was either lymphoma or thymoma, a tumour originating from the thymus gland. In fact, Tara was diagnosed with Hodgkin’s lymphoma. “That was in May 2014. I stayed on in Brussels until July and finished out my internship, then I came home and had a biopsy in August and a second opinion at the Mater Hospital, which confirmed Hodgkin’s lymphoma. I had heard that was a relatively easily-treated cancer, so I was trying to stay focused on that. I was, when I look back, completely in denial about what was happening. ‘This is just a little glitch,’ I told myself.”

She started a six-month treatment plan of chemotherapy. “I was told that the chemo I would be on was very effective for my type of cancer, and that there was an 80pc chance the tumour would respond.”

And indeed, that’s what seemed to be happening. Four months into the treatment, a scan showed the tumour had shrunk down from 12cm to 4cm. “But I was told I would need another four months, rather than the two I thought I had. That was devastating.”

In fact, a further scan at six months showed no further change in the tumour, and Tara was told thenchemotherapy wasn’t, any longer, working for her. “I was told I was to have a stem cell transplant, and the first thing they needed to do was give me a very high dose of chemo, over three days. That didn’t work. I got a very, very bad infection – that’s the only time through this that I actually thought I was going to die. They couldn’t do the transplant.”

At this stage, in July 2015, her team at the Mater switched to immunotherapy, and in November 2015, a scan showed that Tara was clear and in remission.

“I moved to Luxembourg to take that job in February,” she says, “but in May, a further scan showed the cancer was still there.”

A second round of a different immunotherapy followed, and in September of that year, a further biopsy was done, and surgery scheduled. “That became an option, where it hadn’t been before. I felt better at the idea of the tumour being taken out. Psychologically, I wanted it gone. They did surgery, and also took a layer of my heart.”

By December, both scans and biopsy were clear. Everyone was so happy, but they wanted me to keep going on the immunotherapy, which was every three weeks for about two hours. I just felt like I was going to be in treatment forever,” she says. “I’d had so many knocks, by then, I had started to lose confidence in my abilities. Life, and my career, had been going so well. I just felt like I was losing all of that.”

Three clear scans followed, and Tara was taken off the treatment.

“The side effects are pretty bad,” she says, “including pericarditis, inflammation of the pericardium, which is the fluid-filled sac that surrounds your heart. It hurts like a heart attack. I also only have half my lung capacity following the surgery, and peripheral neuropathy.

“I have been admitted back to hospital with pneumonia and fluid on the heart several times. However, I feel grateful that I am where I am.”

Tara started back to part-time work, which brought more normality, and has been going to the gym. “The surgeon who operated on me told me, ‘Be a gym bunny!’ so I’m trying.

“My strength is good, my cardio isn’t where it should be, but I’ve lost five stone – I gained weight from the chemo.”

In September, Tara started on a new treatment, anti-body replacement therapy, to support her immune system. “It was so low, I had two major hospital admissions in a year. So now, every four weeks I go in, with a three-month break over the summer when there aren’t so many bugs around. I haven’t had as many infections since I started this, and if I do get something, I’m better able to fight it.”

In July, she is due to see her cardiologist for a heart MRI – “They think it is only working at 90pc rather than 100pc, so that needs to be looked at” – but in the meantime, she feels like she can finally move on with her life: “I started back on an Irish course and I completed a make-up course as well, something I always wanted to do. I have been living back at home during all the treatment and I felt like a child again. It was wonderful to have my family to support me, but I’m glad to have some independence back. I lost many friends through this – people who didn’t know what to say to me or how to react – and that was almost more difficult to deal with that the treatment, but it makes you appreciate the ones you have more than ever.”

The battle to be well again following a cancer diagnosis is one that calls on many resources, and not least the people around us. Kristina Troy (26) from Meath, an assistant principal in a secondary school in Lucan, found herself becoming carer to her father, when he was diagnosed in his 70s with lung cancer in January 2017.

“He had surgery first,” Kristina says, “at the Mater Hospital, and then chemotherapy. He was told there was an 80pc likelihood that the chemo would be effective, but unfortunately, it wasn’t, and after a few months, the cancer had come back in both lungs.”

In June 2018, his oncologist started him on immunotherapy instead. “And we’ve seen great results from that,” Kristina says. “Before, with the chemo, he would have nausea, fatigue, and be very prone to infection which meant he had to limit his social life and who he saw. Now, with the immunotherapy, he is still fatigued for a week after he gets the treatment, but there’s no nausea and he can mostly go about his life as normal. It is wonderful to see new treatments, something so innovative, becoming more available. Dad’s quality of life now, a year on, is great. He has his ups and downs, of course, but there are more ups than downs.”

Scans are reviewed every three months, “and at the last scan, the tumours had significantly reduced. There is no ‘cure’ for lung cancer,” Kristina says, “which means that when someone is diagnosed with it, there are a lot of hard emotions. That said, there are some success stories, and we need to remain optimistic.

“Seeing the tumours shrinking is so positive. My dad is a farmer, and it’s wonderful to see him back to a full life. Mostly, he is cheerful and optimistic. As a carer, you put the supports in place for when he is feeling drained and fatigued. We take it scan by scan, like any treatment, and by now, we’re used to the routine. It’s great that we see the same faces, to have continuity of care, every time we go into the Mater. And the care there is incredible. Every patient is an individual, and they treat them as such.

“As a carer, I’ve seen the support, on every level, that they give. In fact, I’ve been so impressed by what they do that recently, I raised over €3,500 by doing the 100 Mile Challenge during the month of February. It’s nice to be part of what they do.”

■ What Is Immunotherapy?

Immunotherapy is an innovative treatment that helps the body to defend itself against cancer by working with the immune system to detect, fight and destroy cancer cells. Immunotherapy increases the body’s natural defences and activates the immune system to fight the bad cells caused by cancer. The cancer cells are then destroyed, or can be slowed down, so that the cancer may not spread. Immunotherapy is used to treat different types of cancer and causes less side effects than other treatments, so patients won’t lose their hair during treatment as it is considered less toxic.

A new Immunotherapy Patient Education Programme aims to empower cancer patients and create greater understanding of immunotherapy treatment. The programme, created by the cancer nurse specialist team at the Mater Misericordiae University Hospital, Dublin, will educate patients on how immunotherapy works, and support them on their treatment journey.

Explaining the initiative, Noeleen Sheridan, Cancer Nurse Specialist at the Mater Misericordiae University Hospital, said: “Immunotherapy treatment activates your immune system, helping to detect cancer cells, and helps your body to recognise and defeat or halt this disease. We found there was a lack of structured education for patients commencing treatment, so we felt an education series would help us explain immunotherapy, support our patients through their cancer journey and improve their overall treatment process. We hope this will become a resource for all immunotherapy patients nationwide.”

Professor Michaela Higgins, Medical Oncologist at the Mater Misericordiae University Hospital, said: “Immunotherapy offers an exciting treatment option for many cancer patients. While not suitable for all patients, we have seen some great results with immunotherapy and it can provide a good quality of life for patients with advanced cancer.

“We hope to continue to improve outcomes for patients through research, collaboration and use of newer medications such as immunotherapy.”

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