When the doctor was first describing her cancer, Katie Doble, 32, stopped listening for some time. Because she had a decision to make. Should she be planning her wedding or her funeral? Her boyfriend had proposed to her just ten days earlier.

Katie went on to get married. She also prepared for her funeral but, thankfully, that must wait.
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Her first symptom had appeared in May 2013—"a strange vertical black bar swimming through her field of vision”. It was diagnosed as uveal melanoma, a cancer of the eye. The first line of treatment involved a “radiation-emitting metal disk placed in the back of her left eye”. As feared, that led to her losing vision in her left eye.

On the positive side, her doctor said the chance of her cancer spreading was less than 2 percent. In April 2014, an ultrasound found no signs of metastasis.

Seven months later, just after Katie’s engagement, new scans revealed that her liver now had a dozen lesions. Like most afflicted with the deadly C, Katie was anxious to immediately start the treatment the physician had suggested, the one that would have given her some 16 months to live.
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Fortunately, she had a rare advantage. Her father was a doctor, who was already exploring more promising options in the stage of clinical trials. On his advice, she refused the treatment and entered a trial at Memorial Sloan Kettering Cancer Center, New York. 

Five months into the trial, her tumors had grown. She was moved to a second arm of the trial that added a second medication to the regimen. The side effects of the combination “kicked my ass”. But she braved it. Determined to overthrow cancer as the ruler of her life, she went skydiving. As she floated down, she tasted the salt from her “happy tears”.

She had to exit the trial because the tumors continued to grow even after two months on the combination therapy.

Then she joined a second clinical trial at UCHealth, Colorado in September 2015. That too she had to leave after one treatment on account of gastrointestinal complications.
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Given that it is not easy to access a clinical trial, and the heavy costs involved (estimated at $600 a month in 2015), most cancer patients hardly get to join one. Katie was already a unique case having participated in two. 

In November 2015, she opted for an FDA-approved treatment of radio embolization. Thirty million tiny radioactive beads called microspheres were injected into the blood vessels supplying the tumors in the right lobe of her liver. It worked! The tumors stopped growing and some even shrunk.

Heartened by this, Katie took a break to focus on building a house, “as one does when you’re trying not to die.”

​She had outlived her doctor’s first dire prediction, but the tumors were thriving in the untreated left lobe of her liver. So, she joined a third clinical trial, again at UCHealth. That trial too went on to fail.

In September 2016, they repeated the microsphere treatment, this time for the left lobe. The cancer gradually stopped growing.

One morning in May 2018, she stumbled out of bed struggling for her balance. A brain MRI revealed that the cancer had now spread to her brain. Gamma Knife radiosurgery eliminated the tumor. However, her liver tumors were growing again.
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Going by a study published in 2019, “the four-year survival rate for Stage 4 uveal melanoma patients is only about 2 percent.” By now, Katie had taken part in three clinical trials and also received three additional treatments. Yet three or four tumors persisted. 

In July 2020, Katie started her fourth clinical trial at the University of Pittsburgh Medical Center. Dr Udai Kammula, the doctor leading the trial, had been after uveal melanoma for almost a decade, because it is “so devilishly difficult to fight”.

Dr Kammula injected her with 111 billion new T cells, after first wiping our Katie’s own immune system. A month after the procedure all tumors were gone or shrinking. The one which did not was surgically removed.

​Finally, Katie was cancer free. 

​Today, she works as a recruiter and gives talks to pharmaceutical and biotechnology companies and nonprofit cancer organizations. She lifts weights and rides her exercise bike when she and Nick are not enjoying golfing, biking and hiking.

“Had I made the choice to not get a second opinion, I would be dead,” Katie said. 

How would Katie have fared, if she were in India? Is it possible for a patient in India, handed a grim prognosis, to take a chance with an experimental remedy that is under clinical trial?

Dr Santam Chakraborty, Senior Consultant at Tata Medical Center, Kolkata, co-author of a paper on “Geographic disparities in access to cancer clinical trials in India” is not very optimistic.
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The best person to inform a cancer patient about a clinical trial possibility is their oncologist. However, as India does not have a very integrated healthcare system, the oncologist is most likely to offer trials running in the hospital they are attached to. According to Dr Chakraborty, given the limitations of the clinical trial registry in India, “finding a clinical trial which is appropriate for the patient is a difficult endeavor for the oncologist.”  

In the US and Europe, an efficient, integrated healthcare system makes healthcare records available to all centers. In India, if a patient undergoing treatment in Hospital A wants to undergo a trial on in Hospital B, they will have to undergo a full workup and could be turned away at the end of it for failing to fulfil the eligibility criteria. The patient could have avoided the hassles and the cost of transfer if the data were easily accessible to Hospital B from the records of Hospital A.

There is also the larger problem that in India, as yet, “the clinical trial scenario is not geared towards providing really cutting-edge solutions.” In advanced countries, a new therapy is researched for decades in a laboratory before it becomes eligible for evaluation in a patient.

In India, clinical trials are usually run with products already evaluated in another country. A pharmaceutical company may evince interest if and only if it is sure that there will be a market for the drug in India.
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Clinical trials in India mostly focus on finding new uses of existing treatments or evaluating efficacy of treatments that have been evaluated in the west or finding ways to make the treatment more affordable. This is in stark contrast to the scene, say in the USA, where a novel innovation could be on trial.

“Even if I were aware that a trial very relevant to my patient is being run in an institution like Memorial Sloan Kettering Cancer Center,” Dr Chakraborty said, “I can offer that to my patient here only if the same trial is being conducted at a center in India.” Most early Phase I trials done in India are for “me-too molecules”, meaning medication already established outside.
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It is mandatory for every clinical trial to be registered with Clinical Trials Registry of India (CTRI). “As a patient, I can participate in a trial if I fulfil all the eligibility criteria, provide my consent and my physician is an investigator in the trial,” Dr Chakraborty pointed out. 

Whether in India, the US or elsewhere, there is no telling if every person who enters a trial will be blessed with a positive outcome like Katie was after all her trials. While everyone’s outcome may be unique, Katie has been sharing her experience with all.

“I gave my first talk in 2017, giving an acceptance speech for The Courage Award from the Melanoma Research Foundation. That’s when I realized how much I loved sharing my story. It gives people hope. It now feels like it’s what I’m called to do. It’s my way of paying it forward and saying thank you to all of the people who have helped me along this journey. I don’t want to hoard the wisdom I’ve gained from this horrible experience and expect other people to just figure it out on their own. It’s really, really hard to navigate this. If I can help just one person and change the course of their treatment for the better, then it’s worth it.”

It is never easy for the patient and the caregivers. Who helped Katie pull through it all?

"I've always identified both Nick and my Dad as my caregivers. Nick is my moral support. And my big spoon! He takes care of me physically and emotionally. And my Dad is the one who has helped us navigate this journey and understand the decisions we’ve had to make. I designated them both as my medical powers of attorney because I didn’t want either of them to face difficult decisions alone."

Do Katie and Nick have a prescription for those who are going through such tough times, so that they can cope better? Yes! Communicate and laugh!

"We still manage to laugh our butts off!" Katie added, "one of my lasting side effects from all of my treatments and the abdominal surgery is that it really hurts when I laugh hysterically. So, when I get that keel-over, gut-wrenching laughter, I can’t breathe. And he [Nick] loves it!"

How did the bullock cart always come on time to take us to the railway station? Then I was too small to ask and too busy trying to squeeze into a tiny space among the bags and the other members of the family. Nor do I know now; even my mobile can’t tell me.

The cart would shake and sway its way for a long time past many miles of trees and farms until we reached the river. The river with clear water flowing past stones and boulders and fish that swam carefree. 

That’s where we had to get down, cross the river and walk the rest of the way to the station. The elders would get off and carry the bags, stepping confidently from one boulder to another. The whistling of the steam engine would urge us children to run, deliberately stopping once in a while to let the fish nibble at our feet. 

I look up the name of the that river. Wikipedia finds it for me.

“The Kalpathy River, also known as the Kalpathipuzha, is one of the main tributaries of the Bharathapuzha River, the second-longest river in Kerala, south India.

“One of the problems faced by the Kalpathipuzha, like most other rivers in Kerala, is illegal sand mining. This has left many pits in the riverbed, which leads to shrub growth. During summer, the river is covered by a green carpet of Water Hyacinth and other shrubs.”

I am now in a big busy city. I can see two bridges, extending the road from one bank of another river to the other. Above those is another bridge bearing the metro rail. From where I am, I can see everything, and everyone is in a rush.

No one has the time to look at the river, except when you want to fling yet another bag of garbage into it.

The water is sluggish and black wherever it is not smothered by thick swathes of water hyacinth. This river used to attract so many birds. They are missing now. Did all the fish die?
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Right below my window, they are felling more trees so that we can have another road for more people. The river appears to pause and sigh.

Fires in cities. Heavy rain in deserts. Lush green growth in Antarctica.

There are more roads and more bridges. But we can hardly move because there are too many of us. We build and build. But we get time to live only in vehicles.

The rivers now weakly carry the filth we can’t stop generating to the ocean where the mightiest predator is plastic.

We can’t go back to yesterday. Perhaps, today, we can stop and look at the river. And look after it?

​Are we already too late? Is it tomorrow, no, tosorrow already?