If anyone has an organization that you would like me to do a presentation Hey everyone! Enjoyed the day selling books at the Olde Mistick Village today. The CT Women's Health sponsored their event at the same time so there were lots of people around. Unfortunately a variety of different bands played near us all day so it was difficult to speak with customers. Oh well Those going, check out John's book in the Connecticut building with the Connecticut Authors section.
Jump to. Sections of this page. After treatment, extra protein is needed to heal tissues and prevent infection. Ensure your meals and snacks include a source of protein such as poultry, fish, lean meat, egg whites, yogurt, legumes, nuts and nut butters. If you can't get enough protein from your diet, drinking commercial meal replacements can help boost your intake.
If you are sensitive to the milk sugar lactose, choose a lactose-free product. Or, consider making your own protein shake with whey or brown rice protein powder, milk or almond milk and fruit. Protein powder can also be mixed into hot cereal and yogurt. If nausea and poor appetite prevent you from eating full-sized meals, eat mini meals or snacks every one to two hours to prevent feeling too full. Eat your largest meal when you feel the hungriest, often in the morning.
Avoid drinking large amounts of fluids with meals to prevent feeling too full. Sipping on a sports drink, clear juice, flat carbonated beverage or herbal tea between meals can also help manage nausea. Eating small portions of dry, starchy foods such as bread, crackers and cereal may help too. You may need to avoid certain foods if you have side effects such as mouth sores, tender gums or sore throat. Foods that can irritate your mouth include citrus fruit, tomato sauce and juice, spicy or salty foods, raw vegetables and dry foods such as toast and crackers.
Soft foods such as milkshakes, yogurt, cottage cheese, pudding, applesauce, scrambled eggs and bananas are usually well-tolerated. It's also very important to practice food safety. When undergoing cancer treatment, your immune system can be diminished temporarily making you more susceptible to food poisoning. To minimize the risk of infection, cook meat, poultry, seafood and eggs thoroughly. Avoid unpasteurized dairy products and juice, cold smoked fish, raw tofu and unwashed produce.
Leslie Beck, a registered dietitian, is based at the Medisys clinic in Toronto. Click here to submit your questions. Your name will not be published if your question is chosen. The content provided in The Globe and Mail's Ask a Health Expert centre is for information purposes only and is neither intended to be relied upon nor to be a substitute for professional medical advice, diagnosis or treatment.
In the past, the side effects were the sign that the drugs were working. Now, there was nothing. A month later, in June, Sholler was in her clinic, going over test results at her computer. Will had been in a few days before. But now she was giving the scans a closer look, and seeing something different. She wrote it up in a report, but then decided against calling Pat. She instead attached the file to an e-mail and pushed send.
He should read it himself. Pat was at an Italian place in Braintree, with plates of chicken parm and the Sox playing on big screens. Another BeatNB fund-raiser thrown by a friend. He felt drained, but he made his way around the room, smiling and shaking hands, and then went to the bar. He ordered a beer and stepped away to get out of the crowd for a minute and check his phone. He saw an e-mail from Sholler with the full report. He scrolled quickly, not expecting any news, until he noticed a line that he had to read twice.
The tumor had shrunk. DFMO was working, or seemed to be. Would it last? Or was this to be one of those tricks cancer can play, responding to a drug before outflanking it? The only way to know was to keep going, with more children, until they had the answer. The opulent, gold-leafed ballroom was packed.
Leading pediatric oncologists had come from around the world to the conference in Grand Rapids, Mich. Officials at the federal Food and Drug Administration watched remotely on a live video feed. On the screen behind her as she spoke that day in May was a photograph of Will Lacey holding up a brown medicine bottle as though giving a toast. It had been shot four years earlier, soon after the boy had begun taking DFMO, the drug Sholler was testing on children with neuroblastoma. Will was 5 years old then.
He was 9 now, and very much alive. Sholler hesitated to call him cured. Two other children enrolled in her trial had similarly incredible results. The news had electrified the global community of parents of children afflicted by this virulent form of cancer, and Will had become an icon they looked to. But the study as a whole was not all miraculous. The other 14 children on the trial had all died. In one room, she would see Will Lacey or one of the other thriving patients. Just down the hall would be children taking the same drug, still choked by cancer.
DFMO did everything for a small number of patients and nothing for many more. Then one day she asked herself if she might have been going about it wrong. In experiments in her lab, first in petri dishes and then in mice, the idea worked incredibly well. The cancer cells struggled to reproduce. So she changed her line of attack, and in June , she started a new, larger trial, for children in remission, using DFMO to try to keep them there.
There would be 80 children divided into two groups — the larger one made up of those who had gone through traditional treatment and had not yet relapsed and the other of children who had relapsed once but whose cancers had been again brought into remission.
There, with more resources to carry out her mission, she had thrown herself into building a new clinic and lab. Pat had become her emissary and proselyte, crisscrossing the country, speaking at conferences and neuroblastoma gatherings, raising money, and spreading the gospel of DFMO. When the first 10 patients in the main group all reached the one-year mark still in remission, Sholler had moved to double the size of the study to children, and Pat raised the money to make it happen.
After two years, the numbers seemed even more convincing, and now, on the stage in the ballroom, she was ready to tell the world for the first time. Slide by slide, she told the story of DFMO, arriving finally at her best slide, the one she could not wait to get to. It showed results for the 39 patients in the main group who had completed at least a full year on DFMO.
Statistically, she said, a quarter of them or more should have relapsed by then. A charge went through the room. Pat Lacey could feel it from his seat in the back. It was what he had been hoping for, a jolt of enthusiasm to help him and Sholler achieve their goal of getting DFMO to every child with neuroblastoma.
For her first study, CPP had felt like a savior — agreeing to donate the drug in exchange for her data. The start of the trial was delayed while Pat raised the money. A child Pat knew, a young boy in Massachusetts, relapsed just before they could get it underway. The company was facing financial constraints of its own. Its national trial to find out if DFMO prevented colon cancer polyps from re-growing was showing promise but running long and burning through money. Jacob and other senior staff had stopped taking salaries. If they could get FDA approval to treat cancer with the drug, the windfall could be huge.
But they were still years away. The phone rang. But now, in the days since Sholler detailed her results at the conference, they called at all hours, desperate for their children to have the drug. Parents were calling months before their children could qualify for the study, desperate to book spots before it filled up. Sholler wanted to get the drug to as many children as she could. For each new hospital that joined their network, Bergendahl made a mark on a map. Each new city felt like a victory. Bergendahl had been with Sholler since the beginning in Vermont.
The emotional toll seemed too relentless. She had changed her mind after meeting Sholler, and since then, they had been together through every up and down. Bergendahl knew each patient in detail, down to their favorite flavor of pudding. Back in Braintree, both Lacey daughters were in school. Will was finishing fourth grade.
The dry-erase calendar in the kitchen was overflowing with hockey and dance and lacrosse dates. And there were still medical checkups. Will went to local clinics for quarterly scans. Once a year, he and Pat flew to Grand Rapids, where Sholler gave the boy a full workup. Each time, Will checked out fine. Then, he complained of double vision. There was an anguished wait and some complicated brain surgery. The spot turned out not to be cancer but a hemorrhage, possibly caused by the years of caustic chemotherapy and radiation.
Will would recover, but there were more doctor visits and physical therapy.
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He was always on his phone, always in touch with Sholler and the people who supported her. A few weeks after the conference, Pat saw a note from Jeff Jacob appear in his inbox, addressed to him and Sholler, congratulating them on the conference and the study. She and Pat both knew what that would be — shutting down her current trial and launching a placebo-controlled random trial.
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It was considered the only way to prove, without a doubt, that a drug works. It would allow doctors everywhere to prescribe it, widening the market for CPP. Children would die. Jacob had been sympathetic. She thought he was wrong that only a conventional random trial would persuade the FDA. She believed she had an idea the agency might accept: Instead of giving a placebo to desperately ill children, she would create a control group using published data on patients whose treatment had been identical, except for DFMO.
Getting the drug to as many patients as possible remained her only goal. She dug in for a fight, but still she worried. If their relationship foundered there was nowhere else to get it. She refused. Hospital lawyers preferred it that way, but she also relished the opportunity to send a signal: She did not work for CPP.
Jacob was frustrated. In e-mails and conference calls through the summer, he and Sholler argued over how to proceed. Positions hardened; neither would budge. By late July, with negotiations going nowhere, CPP informed Sholler that it was working with another prominent pediatric oncologist for future trials. Sholler felt cornered. Pat was in a panic. They would hit 80 patients in a few months. After that, there would be nowhere for children to get DFMO. Any trial that CPP tried to launch would take years to get underway.
Then one day, she received a phone call out of the blue from an old friend who had a wild idea. Her son had managed to beat a related form of cancer, but the experience had left her frustrated by the pace of pediatric research. She was the one who had, years earlier, arranged the gathering in New York where Sholler met Pat Lacey for the first time. She also happened to be a powerful businesswoman who ran a hedge fund with her husband and was one of two women on the board of Berkshire Hathaway.
Outlandish as the idea seemed, it was one that had occurred to Pat before. Sholler dismissed the idea again, but over the next few days the fight with CPP only escalated. She now saw no other way. She e-mailed Witmer: You need to do this now! Pat pounded out a livid e-mail, telling the company they barely had enough DFMO to get through the next two months. You are quite literally withholding lifesaving medicine. But a short time later he did get word that someone from CPP would be in Boston and wanted to meet with him. Pat looked at his phone, checked the time, and drummed his fingers on the sleek modern table.
It was a crisp day in October. Pat had never heard of the man who was coming to meet him. Pat would keep his guard up. They shook hands and Donovan sat, all friendliness and small talk, like they were co-conspirators, Pat thought, the only level heads in a house of crazies. They were going to figure this thing out.
Pat listened and nodded at the right times, smiled, until finally he tried to pin Donovan down. He wanted him to commit to at least sending the DFMO they needed for the original 80 patients. Donovan leveled his gaze. A few days later, CPP sent one last small shipment of the drug — they called it a good-faith gesture. The company made clear in an e-mail that would be all until the drug was proved safe and effective. She wanted to know how much they had left and how long it would last, factoring in new children.
She had no plans to refuse anyone. A shiver of dread ran through Sholler. She hung up and called Pat to tell him the news. The secret plan was now the only plan, and the odds against them were sobering: Meryl Witmer and Pat Lacey would need to start a drug company, manufacture pills from raw chemicals, and get regulatory approval to give it to children.
It could easily take years. They had days. They needed to build a drug company, out of nothing and in no time. Pat Lacey and Meryl Witmer had to raise money from donations and summon a complex working enterprise, licensed and equipped to make the pills that were saving lives. The only easy part was coming up with the company name: Kids Cure Pharmaceuticals.
It was already December. They worked feverishly and at all hours and told no one outside their circle what they were up to, even the parents of children now taking the drug. They worried the parents might panic and that their former supplier, a firm called CPP, might try to stop their new venture if it caught wind of it. Witmer, a New York hedge fund manager with connections and business experience, took the job of finding and assembling the building blocks of a drug manufacturing operation, while, in Grand Rapids, Mich.
At night, she and her program manager, Genevieve Bergendahl, hammered away at the hundreds of pages of explanation and data. In between, Sholler squeezed in dinner with her own girls, who were now 9 and When they had each turned 8, she said a silent thank you. Days raced by quickly, but by the end of December, it felt like they were making real progress. It helped that they had started with an incredible turn of fortune.
There are only two companies in the world that manufacture the raw ingredients for DFMO. The other was a European company, and when Meryl Witmer heard the name of the company she felt a jolt of excitement. I already have a business relationship with them, she said. She quickly struck a deal, then fronted the cash to get the raw ingredients on a ship and heading across the Atlantic. She also managed to find a Florida company that could turn the chemicals into a drug — and promised a quick turnaround when executives heard who the drug was for.
On Christmas Eve, Sholler called him at home. The match had been met. Much had been done in a very short time. It seemed possible, even, that they were slightly ahead of schedule, and as the New Year arrived they allowed themselves a faint, and unspoken, belief that they might make it in time. Ready to explode with frustration, Sholler hurried to her office at the hospital in the January morning cold. Without the raw materials, they were nowhere. And so Sholler arrived at her office at the hospital that morning ready to light a fire.
She picked up her desk phone and punched in the number of the FDA project manager assigned to her application in Maryland. The phone rang on the other end of the line. It kept ringing, then went to voice mail. The next morning the FDA manager called back and listened while Sholler confided everything — the fight with their drug supplier and the need for speed.
She laid out a long checklist of things that had to get done. If Sholler could deliver on her end, the case manager told her, she would do everything she could to clear a path at the FDA.
Later that day, Meryl Witmer called, ecstatic, with the news that customs in Miami had released the shipment, and a truck was already headed west across the Everglades, carrying the precious chemicals to the manufacturing facility on the Gulf Coast of Florida. The manufacturing company still had to run a batch of pills and submit them for time-consuming testing for purity and safety.
Only when the drugs had passed that test would the FDA consider clearing the way for children in the trial to take them. The manufacturer promised to work quickly, and a few days later, on Jan. The DFMO was then moved into laboratory control rooms to be exposed to varying levels of light and humidity. It would take weeks to see if the drug remained stable or whether mold or harmful microbes would grow.
The testing had to be rigorous. Three weeks passed, and they were still waiting on the test results when an e-mail arrived from the FDA. The agency said the application would be fully in order, once the safety test results were in. After that, the FDA would have 30 days to make a decision. Sholler and Bergendahl scoured the inventory of DFMO at each of the 29 hospitals now participating in the study, looking for surpluses that they could ship to hospitals where there were more patients than pills.
That might eke out a little more time. Bergendahl lined up the special couriers and expensive packaging needed to safely ship DFMO from one part of the country to another. Talks had gone nowhere. Pat talked about a last resort — going to the media. They were coming nearer to that point when Witmer finally got word that the testing in Florida was complete and that their pills had passed with flying colors. Sholler rushed the results to the FDA. It was Feb. Now it was all waiting and worrying.
Eleven days on the calendar was just eight working days. It seemed impossible to believe that a sprawling, deliberate bureaucracy like the FDA could do anything in so short a time. At home in Braintree, Pat checked in with Sholler and Witmer every day, and every day there was nothing to report. He felt trapped. Roofs were collapsing. Schools were closed. The kids had been home almost every day for a month. He worried over Will.
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The boy had outrun death for 10 years now, but was still recovering from the after-effects of a brain hemorrhage, possibly caused by his many harsh cancer treatments. He had regular appointments with a physical therapist. At the end of each session, Will would sit nervously while the therapist talked to Pat and Dina about his progress, then meekly ask the question: Hockey?