Lesser-known lymphoma produces alarming statistic

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