A life worth living

StephenW

Sunday June 19, 2011                                                                                A life worth living                                                                                                                               
Beneficiaries from the NexPAP patient assistance programme for treatment of liver cancer celebrate their ‘second-chance’ in life.
  THEY were ushered into the private room filled with reporters and photographers. Chong Yik Ing and Ismail Zakri Md Khalid, both anak Malaysia, with differing backgrounds, but with one thing in common: they are living with advanced liver cancer.
Chong was accompanied by his youngest, daughter Catherine, while Ismail had by his side Aida, his oldest.
Both are liver cancer survivors, benefiting from the NexPap programme (designed to give survival advantage to liver cancer patients by donation of the drug, sorafenib).
The NexPAP Patient Assistance Programme is a joint initiative by Bayer HealthCare and the Malaysian Liver Foundation (MLF) that offers sorafenib (an oral anti-cancer drug) to Malaysian patients diagnosed with inoperable liver cancer (hepatocellular carcinoma or HCC). Sorafenib is the first and only drug that has demonstrated results to significantly improve overall survival in patients.
Commending Bayer HealthCare for initiating the NexPAP patient assistance programme, Tan Sri Dr Mohd Ismail Merican, president of the MLF, said: “The impact of liver cancer in Malaysia and around the region cannot be ignored, particularly since the prognosis for patients diagnosed with liver cancer is often poor. Initiatives such as NexPAP will go a long way towards giving more patients better access to treatment options such as sorafenib, and a better chance at improving their quality of life.”
At the gathering was also Datuk Dr Nor Shahidah Khairullah, Chief Executive Officer and Medical Director of the MLF. She said: “We are extremely pleased with the results of the programme. The report of improved survival and quality of life for patients who have benefited from the programme is encouraging. For many of them, NexPAP has given them a precious and invaluable extension of time with their loved ones.”
“Liver cancer is a notoriously hard-to-treat disease as it does not respond well to conventional chemotherapy. Liver cancer can only be cured if it’s found at an early stage, before it has spread and if the patient is healthy enough to have surgery. However, surgery is often too late to be an option due to late diagnosis as symptoms only appear in the later stages. Many patients die within a year of diagnosis. This is why liver cancer is also termed as a silent killer,” said Dr Matin Mellor, consultant oncologist.
“Sorafenib is currently the only oral anticancer treatment available, and the NexPAP programme has helped make a difference in the lives of patients and their families. With better access to effective treatment options such as sorafenib, we now have a chance to improve their overall chances of survival, as well as help reduce the financial burden on the family arising from the cost of the treatment,” added Dr Mellor.
Ismail’s story
Ismail Zakri, 62, is a business advisor, and a HCC patient on the NexPAP programme. He is married and has three grown-up children aged 35, 31, and 27 respectively. He was diagnosed with liver cancer in February 2011.
Ismail has had Hepatitis B since 1985. He was not on treatment, but was closely monitoring his liver condition. He took care to practise a good and healthy lifestyle, watched his diet, and maintained his weight at 70kg for more than 25 years.
He also kept active – exercising regularly by jogging or going to the gym every day, and on the social front, he would often meet with friends after work, before heading home around midnight.
   Ismail, with some of his family members. He wants his family to accept that while certain things cannot be changed, they can always have hope.
For many years, he would sleep four hours a day.
“I was diagnosed with liver cancer by chance after I collapsed one day in February 2011. At that time, we thought it was a heart attack. However, upon conducting a heart scan, the doctors discovered a big growth near my heart. I underwent open heart surgery, and it was then that we realised that the tumour originated from my liver. My doctor told me that my tumour could not be operated on as it was already in an advanced stage, and recommended me to take sorafenib,” he recalled.
In February 2011, Ismail was enrolled in a sorafenib trial for liver cancer patients. However, he experienced some stomach bleeding (known side-effect) during the initial stages of treatment and was discontinued from the trial.
He then sought treatment at a private hospital, where his doctor also recommended sorafenib. Due to the previous experience with side-effects, his children were initially opposed to the recommended treatment. However, Ismail knew that his liver would continue to deteriorate if he did not go on treatment, and that he would just get weaker and not live very much longer.
Ismail started treatment with sorafenib again. Although he experienced some side effects during the initial stages of treatment, he persisted with the programme as the treatment helped him feel better, and he wanted to have more time with his family.
Over time, the side effects lessened, and he is able to enjoy a better quality of life and continue to care for his children despite living with cancer.
   Ismail ... For every additional day that has been given to me to live this life, it is another day of hope, and I want to make it count for my family and I.
He visits his son at his company every day just to spend more time with him.
“Since my diagnosis, the bond between the children and I have grown stronger.
“I always display a positive attitude to my children as I want them to accept that while certain things cannot be changed, we can always have hope.
“For every additional day that has been given to me to live this life, it is another day of hope, and I want to make it count for my family and I,” said Ismail.
Since his diagnosis, Ismail’s bond with his children has grown stronger.
They are very supportive, and at least one of his children would accompany him for every follow-up visit with his doctor. He is grateful to be living beyond his initially predicted survival time.
Aida, his eldest, remarked: “We were truly shocked by the diagnosis. We knew we had to support him. He was initially very down. We have to keep aside our own emotions, and support him.”
Izrin, his youngest, has this to say: “Part of the children’s duty is to be with him, care for him.
“After Raya, it’s my turn to take care of him, and I’ll be there to give what’s best to my dad. It’s something we have to do.”
Though life has changed significantly for Ismail, he hopes it will be only temporary.
“I normally exercise quite a lot, so this sedate pace is not to my liking. My appetite is better now, so I get to eat the many different dishes that my siblings and children prepare, though I do so in moderation. I hope to get back to my office, hopefully after Raya.”
Izrin quipped: “You should retire lah, and enjoy life.”
Ismail smiled in response. “I need to do something. It keeps me sane.”
Chong’s story
Chong Yik Ing, 62, is a manager with a timber trading company. He is married with three children. He enjoyed good health, and without any sign or symptoms to indicate otherwise, he assumed that he was in good shape.
On November 22, 2010, Chong felt a severe and sharp pain on the right side of his abdomen. He was admitted to the hospital and monitored for two hours.
   Chong and his daughter, Catherine. She gave up her career in Britain to be with her father.
Then, told that it may be due to gallbladder disease, he was given painkillers and discharged.
However, he was concerned as he had not experienced such pain before. He decided to seek a second opinion.
On Nov 24, 2010, he underwent blood tests and an ultrasound. He was shocked when his doctor told him that he had hepatitis B and that he had liver cancer – an inoperable big mass that was spreading. The cancer was already in a late stage and his doctor gave him only a few months more to live.
Chong’s family was also in shock that their father may leave them so soon.
Chong underwent transarterial chemoembolisation (TACE), a procedure in which the blood supply to a tumour is blocked and chemotherapy is administered directly into the tumour, on Nov 26.
However, 10 weeks later, on Jan 11, 2011, he had a fever and felt pain in his upper right abdomen, which was also swollen and bloated. Upon further investigation, doctors discovered that it was due to bleeding and infection from his tumour.
He then underwent 10 sessions of radiotherapy to control the bleeding. This made him very weak. He had frequent fevers and did not have an appetite.
   More time: Chong Yik Ing is happy he’ll be able to enjoy his granddaughter a little longer.
Chong’s doctor recommended treatment with the oral anti-cancer therapy, sorafenib, when he completed radiotherapy.
A second opinion also confirmed this recommendation. With this, he started treatment with sorafenib, aiming not only to live longer, but to have a better quality of life.
Chong’s family members were also concerned over the possible side effects with sorafenib, particularly the reactions involving the hands, feet and skin, as Chong had a history of skin rash due to close contact with chemicals from his job.
   Dr Ismail Merican ... Initiatives such as NexPAP will go a long way towards giving more patients better access to treatment options such as sorafenib, and a better chance at improving their quality of life.
Nevertheless, after considering the benefits and risks, the Chong family decided on treatment with sorafenib.
Their initial hesitation over the cost of treatment was also soon laid to rest with when Chong qualified as a beneficiary of Bayer HealthCare’s NexPAP patient assistance programme.
Although Chong experienced side effects, he was able to manage the symptoms well – by applying lotion for dry skin (a known side effect of sorafenib) and by resting more when he was fatigued.
Although he lost weight due to poor appetite initially, he gradually recovered 10 weeks into treatment.
Today, Chong has returned to his usual daily routine of waking up early to some light exercise, before starting work in the afternoon, although he now rests more. He feels healthier, does not feel tired or sleepy and is no longer in pain.
He is grateful that he is still alive. Chong advises men to go for regular health checks and not to neglect hepatitis B.
His daughter, Catherine, 28, was living and working in Britain. Upon receiving the devastating news, she immediately resigned from her job and returned to Malaysia to care for her father.
“I was very comfortably established in the UK and my career was going well, but the thought of my father leaving us so soon was too much to bear. Giving up my life in the UK is but a small sacrifice as compared to all that my father has done for us in bringing us up,” said Catherine.
Today, she is her father’s constant companion and is with him for all follow-up medical consultations and when he was hospitalised.
Catherine is accepting of the current situation, believing that all things happen for a reason, and that God will heal her father. She treasures the time she has with her father, but also feels that the time she has with him is not enough.
Chong’s wife, Foo Choon Yang, is grateful for his improved condition.
“When I first heard the diagnosis, I was in shock. The doctor said he had only two to three months left.
“At that time, I thought to myself, ‘When he goes, I’ll go with him.’
“He is such a wonderful and good man, a loving father, a supportive husband. I can’t imagine life without him.”
“I am thankful to Bayer HealthCare and the Malaysian Liver Foundation for giving my father a ‘second-chance’ through the NexPAP programme.
“If not for the programme, I am not sure that I’d even have the chance to celebrate Father’s Day with my father today,” Catherine added.
Lessons to learn
According to Dr Ismail, unfortunately, about 80% of liver cancer patients are diagnosed too late. “We always advise those with hepatitis B and C to go for regular check-ups. This way, we can detect changes early, and start treatment.
“The Malaysian Liver Foundation has been around for years, and since its launch, we have been organising many events at various levels of society to highlight liver diseases – we’ve events for doctors, patients, and the general public.
“This year, we’re organising an international meeting – the Liver Update – in July. We organise this update every two years. It’s all part of the foundation’s effort to educate people about liver disease,” he said.
At the end of the day, this is a tale of hope, love, and faith. We wish the best to both Ismail and Chong, and their families, and hope to see them again next Father’s Day.

qqjamie

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