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. 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. 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. The trials beginFive 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. 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. Over to microspheresIn 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. 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. Arming the immune systemIn 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. What if Katie were in India?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. 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.” Serious limitationsIn 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. 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. 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. Katie shares to helpWhether 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!"
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What if Humpty did not have a great fall? Because happy Dumpty was saved in the nick of time by the pail of water Jack and Jill were carrying? We are playing with rhymes for a reason. The thinking has always been repetition of good old nursery rhymes helps develop focus and vocabulary. Does that rationale extend to all learning by rote? A report by The British Psychological Society cites research to state that most little children are “insatiably curious”, constantly questioning and exploring (young parents would concur, for sure). If the children were to remain in this state they can outlearn adults, but. It is a very significant but because “by about the age of six, their unbridled curiosity starts to wane” which hampers their ability to keep questioning and solving. Now, a new work published in the Journal of Experimental Psychology: General has studied children aged three to six years and “found that simply varying the messages that were embedded in a storybook could make a difference”. Fishing for treasureThere were 138 participants in the study in the US and, “to broaden the cultural background of the sample”, another 88 in Turkey. The children listened to two versions of the same story of Sam following rules and instructions to search a group of islands for treasure. In the first version of the story Sam strictly went by the rules. At the end of it, when a participating child was asked a question, “the potential responses were always limited”. The second version, the “strategic curiosity” version, lefts things rather uncertain. The children could pick which island to visit and also had to keep an eye on the time. Unlike the “obvious” questions that followed the first version, there were open-ended questions at the end of the second version. Then came the application part. After the story, the children were introduced to a new game, which featured a virtual aquarium consisting of five fish tanks. Each tank had different hidden creatures, and the children had 15 minutes to find them. For the group that had heard the “traditional” version of Sam’s story, this meant "following the rules and checking for all your clues". For the other group, it was about "staying curious and paying careful attention to everything around you". While the two groups found about the same number of sea creatures, there were differences in performance. Those who were tuned to the “traditional” approach “often ran out of time to explore all of the tanks”. The “curious” group “prioritized visiting multiple tanks over deeply exploring individual ones and were more likely to get through them all”. The second group “spent a longer time searching tanks that appeared to contain relatively more creatures, even if it took some time to find those creatures”. This was a clear demonstration of greater “strategic persistence”, the researchers concluded. Revisit rote?That “strategic persistence” is valuable in the corporate world. So, in the world of grown-up learning and development, should Sam be taught the rules by rote, or be encouraged to question and rethink? Would that sacrifice discipline and progress? Or yield rich rewards?
What do you think, my accomplished friends in the learning domain? If I am in school, there is no room for questioning either Humpty or Jack. After all, my success depends on getting the answers expectedly right, to up-grade myself. That's what my young seven-year-old student had taught me all those years ago when I attempted to correct her homework. (“This is what my teacher wrote on the board…. Now, who gives me marks? Who gives me punishment if I do not obey?”) By the way, I do wonder what you are up above so high. How come the rain does not put off your twinkle? Why don’t you fall if you are diamonds? Hey, are you really stars or high-flying drones? Images credit: The Washington Post Jesse Defton, 38, a world-class climber, ascends bare rock faces without permanent bolts. Instead, he places removable metal anchors into cracks in the mountain and attaches his rope to them. It is a sport in which one's vision, the ability to spot minor fractures or grooves in the rock, is considered vital. Jesse is completely blind. And completely dependent on his wife Molly Thompson, 40. Jesse was born with a condition in which the light-sensing cells of his retina gradually deteriorated. Even as a child, he had only a fraction of normal vision. Even once he and Molly had become friends and regular climbing partners, she didn't realize that his vision was so limited. He rode behind her on a bicycle, albeit cautiously. He aced engineering courses that required lab work. When he read climbing guides by stuffing his face into the book, his eyes millimeters from the text, Molly thought, "Okay, so he's nearsighted." Then two things happened simultaneously. Jesse and Molly began falling in love. And he lost the rest of his vision. They said almost nothing about their feelings for each other. Jesse didn't say what he wanted, which was to spend the rest of his life with Molly. But he could ask her if she was up for a climb. The sport became an excuse to be together, without talking about being together. The idea of stopping after Jesse lost his vision was unthinkable. Molly speaks into the microphone in a near-whisper, constructing an image of the rock that draws on the climbing guidebook and what she can see as Jesse moves, explaining where he should reach next with his hands and his feet. She needs to remain calm, to exude calmness, even if she worries he might fall. Her own nerves, she knows, could trigger his. Sometimes, when she can't make out a hold, she pretends to see one, offering just enough broad guidance to keep Jesse from freezing up. Her feigned confidence conceals terror. There are some parts of the sport that he has become startlingly good at -- better than almost anyone with perfect vision. The reason, Jesse believes, is that he has a different relationship with the rock than a sighted climber. He is forced to pay more attention to its subtleties. Thank you, The Washington Post, for this story. The words (and the images) are all from the story. Even if you are not into climbing and blessed with good vision, please read the full story. Hopefully, it will make us more grateful for all that life has to and to better appreciate its subtleties.
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