A Tale of Two Doctors: From Diagnosis to Advocacy
The story of Dr. Jude and Dr. Raghu is one of strength, transformation, and commitment to patient advocacy. Both esteemed medical professionals—Dr. Jude Vaz, a pathologist from Mumbai, and Dr. Raghu Krishnaswamy, a cardiologist from Hyderabad—faced the life-altering diagnosis of Chronic Myeloid Leukemia (CML) at a time when it was considered a death sentence. Today, they are not just survivors but powerful voices for patients, representing them in panel discussions with leading oncologists and medical experts.
For Dr. Jude, the discovery of leukemia was particularly surreal. Accustomed to diagnosing diseases under the microscope, he was confronted with his own blood smear revealing the telltale signs of CML. The moment was one of shock and awe, as the line between doctor and patient suddenly blurred.
Dr. Raghu’s story was equally harrowing. Initially dismissing his weight loss and discomfort as minor ailments, he was confronted with a stark reality after blood tests confirmed CML. The year was 1999, and treatment options were bleak. His children were still young, and the future seemed uncertain. The aggressive treatment with Hydroxy Urea failed, unable to find a match for BMT (as his siblings did not match) and the severe side effects of Interferon and Cytosine Arabinoside, which he was put on to, made life unbearable. Professional aspirations pretty much took a backseat, and hope dwindled.
The turning point came with the advent of The Magic Bullet- Imatinib (Glivec). Dr. Jude, introduced to The Max Foundation and Friends of Max by his physician, Dr. Tapan Saikia, in January 2004, soon found himself responding well to the new treatment. The realization that CML could be managed like a chronic illness with minimal side effects ignited a passion for advocacy.
Dr. Raghu’s journey to Glivec was far more arduous. Missing the U.S. clinical trial by a week, he travelled to Singapore to enrol, enduring frequent trips for medication and tests. Within a month, he experienced deep remission, and his life took a dramatic turn for the better. The support of The Max Foundation and Novartis’ patient assistance program ensured continued access to treatment, which he believes marked the beginning of a second lease on life.
Today both doctors realise their unique position—being both medical professionals and CML patients. Here at FOM they play a pivotal role as Patients Advocates. As FOM City Chapter Leaders they help to bridge the gap between medical expertise and patient experience. Dr. Jude finds innovative ways to help fellow patients adhere to treatment, such as advising them to label their tablet strips with dates to ensure daily intake. Dr. Raghu, meanwhile, through his personal experience, is able to empathize with other patients better and understand their needs well, he participates in regional and national patient meetings, and advocates for continued awareness through platforms like Chai for Cancer.
Today, at FOM, Dr. Jude and Dr. Raghu are prominent voices. Their participation in panel discussions alongside leading oncologists brings a critical patient perspective to medical conversations. They reassure newly diagnosed patients that CML is not a death sentence but a manageable condition, akin to diabetes or hypertension. Their personal stories serve as a beacon of hope for other patients and caregivers who are navigating their own CML journeys.
Their advice to CML patients:
Dear CML and GIST survivors. Our message to you is simply to get on with your life as if you don’t have a problem! Plan your future from marriage to retirement and beyond as if you never had a problem. The way we see it with improving treatments and newer and newer drugs coming in, the ten and twenty year survival is more than 95%. That is similar to the life expectancy of some one who does not have CML. You should not hold back from what you set out to do because of this.
Today we consider ourselves lucky that we have a bigger family, FOM to fall back on. A family you weren’t born into but fortunate to acquire thanks to CML.
Together we will win the fight!
