Lesser-known lymphoma produces alarming statistic

Emmy Fitri, The Jakarta Post, Jakarta

Pro-democracy activist Ibrahim "Bram" G. Zakir has the resilience of a warrior. A political prisoner in the Soeharto years, his unfaltering loyalty to his country and dream of a people's democracy have never wavered.

Like many who are committed to a cause, Ibrahim was neglectful of his health. Last year, doctors diagnosed him as having lymphoma. His fighting spirit saw him through his ordeal and this year he went into complete remission.

Lesser-known lymphoma is a type of cancer that is developed because of the mutation of the lymphocyte cells.

The causes remain unknown but the World Health Organization (WHO) has cited at least four possible factors: genetic; immune system deviation; a virus or bacteria; and chemical toxins like herbicides, food preservation chemicals and chemical food coloring.

Lymphoma killed Jacqueline Kennedy Onassis and Jordanian King Hussein. The World Health Report for 2000 showed lymphoma killed more than 300,000 people worldwide and over 1.5 million people were living with lymphoma that year.

Because of the alarming statistics, the International Union Against Cancer declared Sept. 15 World Lymphoma Awareness Day.

The event promotes education for the public on the condition, its symptoms and how it affects lives. The official website of the day makes it clear that early diagnosis makes a huge difference in the ability to combat the disease.

There are two kinds of lymphoma, i.e. Hodgkin's and non- Hodgkin's lymphoma (NHL). The later is relatively more difficult to treat. A recent study found there were over 30 NHL sub-types that require different approaches to treat.

In its website, the Worldwide Network of Lymphoma Groups expresses concern over the rising incidence of NHL by 3 to 7 percent a year. The disease can be very difficult to diagnose due to its common and often-overlooked symptoms. Thus, early detection is crucial as is raising awareness among people that anyone can get this disease.

Bram's grandfather and father died of cancer, but he had always thought he was in perfect health and would be as fit in old age.

But, at the age of 53, Bram, who is one of the founders of political research group RIDEP, was diagnosed with cancer.

With no pain and no external symptoms he did not realize that the cancer was silently spreading. It was his family who knew that something was wrong. Bram underwent a medical check-up and lumps were detected on both lymph nodes, his chest, armpits and groin.

"A biopsy was suggested. I heeded the advice and the results showed I had advanced non-Hodgkin's lymphoma. I took the news lightly but my wife could not accept it at first. We dealt with the situation gradually. I had to be cured, that's what I thought to myself," he said.

Undernourished

When the father of three began chemotherapy his doctor looked into his past lifestyle.

A devout Muslim, Bram was accustomed to puasa Daud, or Daud's fasting.

"In Daud fasting, we are obliged to fast one day but not the next. So, in a six-day week, we fast for three days," he said. Perhaps the fasting was not to blame, but Bram was a chain-smoker and would break his fast with whatever was at hand.

"Usually I broke my fast with gorengan ubi (fried cassava), which I bought on the street, or coffee and then a smoke. I got through two or three packs of cigarettes in a day. It's a bad habit, really," he said, adding that his doctor even described him as undernourished.

A drastic change was made when Bram underwent the chemotherapy. He quit smoking and committed to a healthy diet. The eight sessions of chemotherapy were not as traumatic as he had imagined they would be.

"Of course there were side effects, but I had already anticipated that," said Bram, who got serious diarrhea after chemotherapy sessions.

What was more shocking to him was the cost of treatment. He thanked his family and friends for their support in covering his medical expenses.

"I am not a rich man. I don't know what I would have done if I didn't have family and friends like them," he said. For a chemotherapy session, Bram paid Rp 24 million.

"Cancer is an expensive disease. People can just die like that if not treated. My doctor said what happened to me was a miracle, in part because my cancer was aggressive and already in the advanced phase," he said.

Bram considers himself lucky because of his ready-to-help family and friends, but more than that the Indonesian Cancer Foundation (YKI) made it possible for him to pay the net price for his medicine.

"I used MabThera for my chemo. I don't know how I would have continued my treatment without the YKI," Bram said.

The foundation was founded in 1977 by among others, former vice president Mohamad Hatta and former health minister G.A. Siwabessy. The purpose of its establishment was to support the government in its efforts to fight cancer, through promotional, preventive as well as rehabilitative and supportive activities.

"A cytostatic medicine service is but one of our numerous programs. We provide free medicine for cancer patients in state hospitals whose prognosis is good but who can't afford the drugs. The other way we help is through providing cytostatic drugs from pharmaceutical firms for the net price," Melissa S Luwia, a physician with the foundation, said.

The donation service was launched in 1987 while the channeling service kicked off in 1990.

As a non-profit organization, the foundation is dependent on the generosity of donors.

"Of course we want to help more people, but at the same time we also want people to share with us what they can share," Melissa said, adding that the foundation had seen a decreasing number of donations.

"This was primarily caused by the 1997 economic crisis; things never returned to normal," she said.

For Bram -- who remains committed to seeing democracy functioning well in the country -- his cancer experience was precious in that he can use it to motivate others.

"Some people call me to ask this and that, related to my past experiences . But most of the time, I am the one who ends up better informed," he said, laughing.

On the Net:
World Lymphoma Awareness Day : www.lymphomacoalition.com
Indonesian lymphoma coalition :www.indonesia.lymphoma-net.org
World Health Organization: www.who.int

Indonesian Cancer Foundation
www.kankerindo.org
Jl. Sam Ratulangi 35-37, Menteng, Central Jakarta
Phone: 021-31927464
E-mail: ykipusat@rad.net.id