Lisa Ray always felt tired. The actress, known for her roles in crossover films, would complain of fatigue — but didn’t know what was troubling her. “I felt exhausted, pale and drained all the time,” she writes in her now famous blog, The Yellow Diaries. A battery of tests told her what the problem was — she had a form of cancer called multiple myeloma.

Next week, Ray is going to lead a walk in Canada to spread awareness about and generate funds for the disease that’s threatening lives in India. Ray, whose cancer was diagnosed in June, is not going to let the cancer quietly slay cells.

Unlike other forms of cancer, there are no ready figures for multiple myeloma in the country. But Dr Suresh Advani, medical director of oncology in Mumbai’s Jaslok Hospital, says he has noticed a “significant increase” in the number of patients with the disease in recent years. Multiple myeloma is generally found in people over 40 but Dr Advani has seen the cancer in people in their thirties — and even youngsters and children.

Ray has been drawing attention to this rare form of blood cancer for the last two months. Myeloma or Kahler’s disease is a cancer of the white blood cells known as plasma cells. These plasma cells are part of the immune system formed in the bone marrow. When the plasma cells become malignant, they affect the immune system, bringing in infections.

It’s not exactly known what causes the cancer. Though genes play a role, radiation, chemicals (herbicides, pesticides, petroleum products, heavy metals, plastics and so on) are triggers. Benzene, a known carcinogen that enters the body through the skin, lungs or digestive tract, is one of the culprits. Long term exposure to other industrial solvents may also increase the risk of developing multiple myeloma. Unmitigated stress can also be a cause.

When Meeta Nidesh Shah of Gujarat was diagnosed with multiple myeloma in 2001, she was 35 — and full of stress. “I was such a cry baby — crying all the time, emotional and sensitive,” she says. She had undergone a series of traumatic events as well: her first child was still-born and she lived in a joint family which led to tensions. “Then the Gujarat earthquake happened and our tea factory and house were completely damaged. We didn’t have a roof over our heads,” she says.

Shah and her family moved to Mumbai for treatment. “Once we were returning from my chemotherapy session and I saw this huge poster of Amitabh Bachchan near Bandra. I told my husband that I would bounce back like him,” she says, referring to a near fatal injury that Bachchan suffered during the shooting of the 1982 film Coolie.

Shah did bounce back. Now 43, she says it was the loving care of her husband that saw her through her cancer. “He never left my bed, even for a minute. And this was the same man who was so fussy about the way I carried myself, my hair, my sari and even the way I cooked his food. At the hospital, he just didn’t care about anything else and that made me determined to get well soon.”

Like most cancers, doctors believe that it’s the will to live that makes or breaks the disease. Take the case of Surat citizen P. Kumaresan, a production engineer at Reliance’s polyester yarn manufacturing unit. Six years ago, he started feeling as if the bones in his back were giving away. When he was found to be suffering from multiple myeloma Kumaresan was 36. “I was shocked. But I didn’t panic,” he says.

He went for treatment at the Jaslok Hospital in Mumbai and underwent three chemotherapy sessions and a bone marrow transplant in 2005 that cost Rs 4.5 lakh. His company paid the bill.

Now 42, Kumaresan’s recovery is often being talked about at Jaslok Hospital. “Every time I get a multiple myeloma patient I tell them about Kumaresan. He is so full of life and mirth. He doesn’t get bogged down,” says Dr Advani.

Kumaresan admits he was shaken when he heard about the cancer. “We came up the hard way in life from the back of beyond in Salem in Tamil Nadu. I did my degree in chemical engineering and simply never looked back. Life was so wonderful and then this thing struck,” he says.

But he didn’t let the disease pull him down. “I am a positive person. I don’t worry. I pray a lot, visit a lot of temples. I love Carnatic music. I like to draw. I do pranayam. I don’t take anything outside the house except fruit juices. I do half an hour of walking twice a day. And I think all this has helped me.”

Shah, now back home, has changed her lifestyle too. As a vegetarian Jain her diet was anyway restricted. But Shah is still careful about her diet, which now includes wheat grass juice, fruits such as apple, pomegranate and pear and tender coconut water and excludes ghee, oil and most milk products. She has been in complete remission since 2009 though she does plan to eventually do a bone marrow transplant.

Multiple myeloma presents itself with a severe lower back pain or rib pain. It leads to anaemia and lowered immunity levels, which cause weakness and infections as the production of immunoglobulins is disturbed. Former Prime Minister V.P. Singh managed to live with multiple myeloma, combined with a kidney problem, for more than 17 years.

Dr S.D. Banavali, head of the oncology department at the Tata Hospital in Parel, Mumbai, says mutliple myeloma has changed the treatment of cancer. “Earlier we were intent on curing the disease. In the process high doses of chemotherapy hastened the death of many patients. Now we are talking of making cancer a chronic disease, a controllable one. This is because research into multiple myeloma in the last six to seven years made us realise that we need to focus more on the micro environment of the cancer cells. This has managed to increase the life span.”

Thalidomide (Thalomid) and Velcade (Bortezomib) are a few of the wonder drugs that have helped patients. Curcumin, found in turmeric, is also believed to help in fighting the cancer. Dr Bharat B. Aggarwal of the University of Texas, MD Anderson Cancer Centre in Houston, and his colleagues have found that when they add curcumin to human cells with multiple myeloma, the cells stop replicating and die.

The United States has the highest number of multiple myeloma patients. The American Cancer Society estimates that 14,600 new cases of myeloma are diagnosed each year. Twenty years ago, most multiple myeloma patients didn’t live beyond three years. Recent medical advances have helped them survive for 20 years.

It’s a cancer that can be beaten, says Ray in her blog. “Never stop fighting,” she says.

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