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A Nurse’s Perspective: The Unknowns of Treatment

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By Alison Massey as told to Susan Bernstein

There is a perception that chemotherapy is like treatments from 20 or 30 years ago. They believe it will have side effects that are intolerable, but we’ve made significant strides in addressing the toxicities associated with these cancer drugs. People think chemo will make them sick, but that’s not the case. Each individual treatment regimen has its own side effect profile. When you look at the list of possible side effects, people can get overwhelmed. Most people experience a side effect, but nobody gets every possible side effect.

In general, people are a little tired or have a drop in energy for a few days. But between your treatments we hope you can go about your normal life. We have many people who continue to work between their treatments.

Nausea is another common side effect, but we’ve made advances in treating nausea that you may also experience with your treatments. We can offer patients a range of anti-nausea medications. Some treatments cause hair loss and if that’s the case we’ll let you know in advance. It’s important to note that the vast majority do not cause hair loss, although some can cause hair loss. We definitely have ways to help you deal with these issues, including prescribing wigs or other remedies. In the case of hair loss, we can also check certain laboratories or consult our dermatological colleagues.

Fatigue is the main thing you can experience with radiation. Radiation can cause inflammation in your body as it kills the cancer. It’s the inflammation that causes the side effects. Depending on what is being irradiated, you may experience pain. For example, if you receive radiation to the lungs, your esophagus may be affected because the radiation may be near that area of ​​your body. If this is the case, you may experience difficulty swallowing or swallowing. You may even feel food getting stuck after swallowing it. People who have radiation may not realize that it can affect food swallowing.

Sometimes people need radiation of a painful lesion. In people with advanced lung cancer, while you are being irradiated at a specific site, you may experience a flare-up of this pain. Ultimately, the hope is that the pain will go away. During this time we may also treat you with painkillers or steroids such as dexamethasone to minimize the inflammation that is causing pain.

checkpoint inhibitors [immunotherapy medications for lung cancer] can have side effects, but they are different from chemotherapy because they affect your immune system. These drugs can overactivate your immune system, leading to side effects. Sometimes we see patients develop dermatitis, which presents as a rash, or colitis, which causes diarrhea, or pneumonia, which can cause shortness of breath or a cough. Checkpoint inhibitors can also cause arthritis or myositis, which is inflammation of your muscles. Sometimes we can even see swelling of your joints. It is important that patients who experience new symptoms while taking a checkpoint inhibitor let us know so we can start treatment. The quicker you tell us about these side effects, the sooner we can treat and reverse them.

Anxiety and depression are two things we deal with very often during cancer treatment. In my experience, people can feel lost when they are first diagnosed. But once you’ve found your oncologist and your entire cancer support team, and know you have a plan of attack to treat your cancer, most people feel better. Many are afraid of cancer treatments and the potential impact of the treatment on your quality of life. We let people know that they can still live their lives and should keep doing the things they enjoy.

Your mood and outlook may depend on where you are in your cancer treatment journey or disease progression. In the beginning, most people are more functional and tire less. Some people may still be able to work. Others may need to stay home for a few days after each treatment. Our goal is that you don’t stay in bed all the time during cancer treatment. Keep an active schedule as much as possible. Be aware that you will be tired after the treatment and plan for these days. And don’t forget to ask for help if you need it!

Good sleep can also affect your mood and quality of life. Many of our patients suffer from insomnia. Oftentimes, anxiety can cause this insomnia. Your mind is racing so you can’t sleep. Also, some of the drugs you take for nausea or steroids for inflammation can rev you up and cause insomnia. And sometimes an annoying cough can disturb your sleep.

Some people with lung cancer may need to use supplemental oxygen. In my experience, people struggle with the idea of ​​carrying oxygen because, like the association with hair loss, people can now see that they are sick. But from a medical point of view, it is important to carry it when you need it.

Loss of sexual function is something we see in both men and women. In my experience men are louder about this so speak up ladies if you have any concerns! Erectile dysfunction can affect men undergoing cancer treatment. Women may experience vaginal dryness or pain during intercourse. If this happens and you tell us, we may refer you to a sexual health practitioner. Treatments can also affect women’s menstrual cycles. If you are someone who could become pregnant, you should be careful to use contraception during cancer treatment.

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Boy with heart failure saved by doctor who revolutionised transplants

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Nine-year-old Rafi is just a child who is now thriving thanks to Richard’s research (Image: Richard Issitt/Katy Levett)

“One reason for our work is to give away a future,” explains Dr. Richard Issitt, whose pioneering research in pediatric heart transplantation has already helped save dozens of lives.

dr Richard, senior pediatric perfusionist at Great Ormond Street Hospital for Children, knew that young children awaiting heart transplants face many obstacles.

In particular, when a child receives a heart from a donor who does not match their blood type, it takes many liters of donor blood products to flush out their own. If not, the child’s blood would attack the new mismatched organ.

This meant that unfortunately only very young children could receive mismatched hearts – to reduce the amount of blood lost and discarded – and older children had to wait for life-saving transplants.

And so one night in the pub in 2014, with colleagues Alex Robertson and Richard Crook, he came up with a revolutionary idea that would change the future of pediatric heart transplants – with an original sketch drawn on the back of a beer mat.

Richard explains his work in more detail: “We don’t have that many hearts, especially for children, which is obviously a good thing (because it means children don’t die). But alas, for people waiting for a heart, it’s bittersweet. So we need to maximize the use of the donors we have.’

Richard emphasizes that in adult heart transplants, it is crucial to match a patient with a donor of the right blood type. However, this is not the case for children – they can be given a heart of a different blood group as a gift.

He says: “As we age, our immune system builds up the ability to distinguish between blood groups.

“For example, if you’re a type A and I’m a type B and your heart beat to me, my body would realize it was the wrong blood type and start attacking it; it behaves as if it encountered a virus and can’t really tell the difference. Of course, that can lead to rejection.”

The blood filter device developed by Richard and his team (Image: Richard Issitt)

This previously meant mismatched heart transplants were limited to smaller children up to four years old – to reduce the amount of blood lost and discarded.

For decades, this was a major stumbling block faced by the medical world.

But that night in the pub, Richard and his colleagues found a solution. The antibodies that cause rejection are removed during the transplantation with a special blood filter device – which drastically reduces the amount of donor blood required.

“Part of the reason we do our work is to give away a future” (Photo: Richard Issitt)

He explains: “We actually thought well, rather than just throwing away everything related to the blood surrounding the patient, why don’t we see if we can start targeting the actual antibodies that are causing the problem of rejection.”

Richard and his team experimented with specific antibody targets so that antibodies would stick to them – and not to the donated heart. After successful testing in a laboratory, it was adopted in a clinical setting.

Now, seven years later, the practice is being adopted by more and more hospitals around the world, and it also means transplants can be performed on older children too.

One of those children who received a transplant thanks to Richard’s research – which was funded by the British Heart Foundation – is nine-year-old Rafi, who was diagnosed with a heart murmur at just six weeks old.

Rafi spent much of his childhood in hospital (Image: Katy Levett)

After having open-heart surgery at the age of one and receiving a HeartWare – a mechanical pump – at the age of five, Rafi was still in need of a heart transplant at the age of six.

Various complications caused Rafi’s health to deteriorate rapidly and his mother, Katy Levett, was told in 2019 that (thanks to the team’s new technique) her son could receive a mismatched transplant of a different blood type as his only real option for survival.

By this point, Rafi had spent so much of his childhood in the hospital that Katy was willing to try anything to improve his deteriorating condition.

“If that heart hadn’t come along, he wouldn’t have made it” (Image: Katy Levett)

Katy says: “Before his transplant he had no hope. If that heart hadn’t come along, he wouldn’t have made it.

“Rafi was in the hospital for so long he couldn’t live his life and if he hadn’t gotten the heart his life would never have started.”

In a strange twist of fate, Richard himself was also involved in Rafi’s Great Ormond Street transplant on December 29, 2019 – with Katy calling it “the best Christmas present ever”.

Luckily the transplant was a success and now Rafi is a thriving little boy who has his life back.

Katy adds: “He can now do all these normal things: he can go to school, he can play football and he’s learning to swim – which he couldn’t do before.

“He’s a kid now and that’s all I ever wanted.”

“If he hadn’t got the heart, his life would never have started” (Image: Katy Levett)
Rafi is now thriving and loves to play football (Image: Katy Levett)

When we see a kid running around and making absolute havoc on the parents after a transplant, that’s my goal.

Richard and his colleague’s work means they have doubled the age group of children eligible for patients with a mismatched heart transplant – and significantly reduced the amount of blood used during those surgeries.

“Rafi was kind of a trailblazer in a lot of ways, actually due to the fact that Katy was willing to help us push the boundaries of what was possible,” explains Richard.

“It’s nice to know we’re making a difference – so when we see a kid running around and causing absolute chaos for the parents after a transplant, that’s my goal.

“There is no greater reward to see someone come out on the other side and be full of life.”

Were it not for Richard and the team’s novel idea in 2014, Rafi would likely still have been waiting for a blood-group-matched donor heart — more than a year after his mismatched transplant.

“You never think you’ll be able to need an organ, let alone your child need a heart.” (Image: Katy Levett)

Both Katy and Richard also hope their story sheds light on the importance of organ donation and blood donation – and encourage parents to have more open discussions about donating their children’s organs.

Katy adds: “None of this would have been possible without a heart donation and it’s such a taboo subject – especially with children. It is important to emphasize that without donated organs none of this can happen.

“Rafi has probably had 10 blood transfusions in total, including the blood he needed for his transplant.

“We tend to think something for old people when it comes to organ donation, but what we don’t think is a one-year-old who hasn’t lived a life.

“You never think you’ll be able to need an organ, let alone your child need a heart.”

While Richard adds, “The parents who are able to put other children first at such a devastating point in their lives are undoubtedly the unsung heroes of this. Your selflessness and generosity have made it possible for a seriously ill child somewhere to have a chance at life thanks to you.”

More at Centre County Report.co.uk The Heart Hero Awards 2022 campaign can be found here.

Do you have a story to share?

Get in touch via email Centre County [email protected] County Report.co.uk.

MORE : Grandfather joked minutes before the heart attack: “Better finish the defib”.

MORE : The “medical feminist” nurse who advocates for women’s heart health

MORE : A £50 blood test could cut deaths from heart disease


The British Heart Foundation Heart Hero Awards 2022

A BHF heart herowith Centre County Report.co.uk as a media partner this year, anyone can be, from a healthcare professional doing exceptional work, to a young person with heart disease who has shown incredible courage and determination, to an inspirational fundraiser who is creative found ways to fund research.

Those shortlisted will be invited to an awards ceremony hosted by Vernon Kay at Glaziers Hall in London on December 1, where the winners will be announced.

You can Register to watch the celebration online via live stream in the evening from 8 p.m. Guest stars will announce some of the winners.

Category judging is now complete, with Scottish footballer Scott Allan and TV and radio presenter Will Njobvu among this year’s celebrity judges.

But the Young Heart Hero and CPR Hero categories remain open for nominations throughout the year.

The awards raise awareness of the continued need for funding for the groundbreaking research that is turning science fiction into reality and bringing hope to more than seven million people in the UK living with cardiovascular problems.

To find out more about the categories or to make a nomination, Visit the British Heart Foundation website.

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AI ‘Simulants’ Could Save Time and Money on New Medications

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Nov. 30, 2022 – Artificial intelligence is poised to make clinical trials and drug development faster, cheaper, and more efficient. Part of this strategy is to create “synthetic control arms” that use data to create “simulants” or computer-generated “patients” in a study.

This allows researchers to enroll fewer real people and recruit enough participants in half the time.

Both patients and drug companies could benefit, say experts. For example, one benefit for people is that simulants receive standard treatment or placebo treatment, which means that everyone in the study ends up receiving the experimental treatment. For pharmaceutical companies unsure which of their drug candidates holds the most promise, AI and machine learning can narrow the prospects.

“Until now, machine learning has primarily been effective for optimizing efficiency – not for getting a better drug, but for optimizing screening efficiency. AI uses knowledge from the past to make drug discovery more effective and efficient,” says Dr. Angeli Moeller, Head of Data and Integrations Generating Insights at drugmaker Roche in Berlin and Deputy Chair of the Board of the Alliance for Artificial Intelligence in Healthcare.

“I’ll give you an example. You might have a thousand small molecules and you want to see which one binds to a receptor involved in a disease. With AI, you don’t have to screen thousands of candidates. Maybe you can only test a hundred,” she says.

“Synthetic” subjects

The first clinical trials to use data-generated matches for patients – instead of control patients who are matched by age, gender or other characteristics – have already started. For example, Imunon Inc., a biotechnology company developing next-generation chemotherapy and immunotherapy, used a synthetic control arm in its Phase 1B study an agent added to preoperative chemotherapy for ovarian cancer.

This early study showed the researchers that it would be worth pursuing the new compound further in a phase 2 trial.

Using a synthetic control arm is “extremely cool,” said Sastry Chilukuri, co-CEO of Medidata, the company that provided the data for the Phase 1B study, and founder and president of Acorn AI.

“What we have is the first FDA and EMA approval of a synthetic control arm, where you replace the entire control arm with synthetic control patients, and those are patients that you pull out from historical clinical trial data,” he says.

A wave of AI-supported research?

The role of AI in research is expected to increase. Until now, most AI-driven drug research has focused on neurology and oncology. The launch in these specialties is “probably due to the high unmet medical need and many well-characterized targets,” notes a March 2022 News and analysis piece in the diary Nature.

It has been speculated that this use of AI is just the beginning of a “coming wave”.

“There is increasing interest in using synthetic control methods [that is, using external data to create controls]”, so a review article in naturopathy in September.

The FDA already said so approved a drug in 2017 for a form of a rare pediatric neurological disorder, Batten disease, based on a study of historical control “participants.”

An example in oncology where a synthetic control arm could make a difference is in glioblastoma research, says Chilukuri. This brain tumor is extremely difficult to treat, and patients typically drop out of the trials because they want the experimental treatment and don’t want to stay in the standard-of-care control group, he says. Also, “given life expectancy, it’s very difficult to complete a study.”

Using a synthetic control arm could speed up research and improve the chances of completing a glioblastoma trial, Chilukuri says. “And the patients are actually getting the experimental treatment.”

Still early days

AI could also help limit “non-responders” in research.

Clinical trials “are really difficult, they’re time-consuming, and they’re extremely expensive,” says Naheed Kurji, chairman of the board of directors of the Alliance for Artificial Intelligence in Healthcare and president and CEO of Cyclica Inc, a data-driven drug discovery company based in Toronto.

“Companies are working very hard to find more efficient ways to bring AI into clinical trials so they can get results faster at lower cost but also higher quality.”

There are many clinical trials that fail, not because the molecule isn’t effective… but because the patients enrolled in a trial include many non-responders. They just delete the responder data,” says Kurji.

“You’ve heard a lot of people talk about how we’re going to make more progress in the next decade than in the last century,” says Chilukuri. “And that’s just because of this availability of high-resolution data that allows you to understand what’s happening at an individual level.”

“That’s going to start this explosion in precision medicine,” he predicts.

In a way, AI is still in its infancy in clinical research. Kurji says, “There’s still a lot to do, but I think you can point to a lot of examples and a lot of companies that have made really big strides.”

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CDC starting wastewater testing for polio in select communities

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The U.S. Centers for Disease Control and Prevention is expanding its sewage testing for polio in parts of Michigan and Pennsylvania, officials announced Wednesday.

Polio outbreaks once caused panic in the United States, but those concerns died down when a vaccine was developed and widely available in the 1950s and 1960s.

However, concerns about the spread of polio have been renewed this year after the first case of paralytic polio in nearly a decade was diagnosed in Rockland County, NY in July in an unvaccinated man.

Since then, New York health officials have uncovered 89 “interesting cases,” 82 of which have been linked to the infected Rockland man. The virus has been found in sewage from New York City, Orange County, Sullivan County, Queens County and Nassau County.

The CDC will begin wastewater testing in Michigan’s Oakland County and an unspecified area around Philadelphia.

“Sewage testing can be an important tool in understanding whether poliovirus is circulating in communities under certain circumstances,” said Dr. José R. Romero, director of the CDC’s National Center for Immunization and Respiratory Diseases. “Vaccination remains the best way to prevent another case of paralytic polio, and it is vital that people get vaccinated to protect themselves, their families and their communities from this devastating disease.”

Polio occurs in communities with low immunization rates, and the virus can spread quickly. One in four people who become infected with the virus eventually show flu-like symptoms such as diarrhea, fever, nausea, headaches and exhaustion.

However, according to the CDC, most people who contract the virus show no symptoms.

A smaller percentage of people will develop serious complications after contracting the virus.

There are two types of poliovirus vaccines. The first is a shot that can be administered in the leg or arm that has an inactivated spread of the virus, which has been present in the United States since 2000.

The second is the oral vaccine, which contains a weakened strain of the virus that is given via a few small drops in the mouth. The oral vaccine is widely available outside the United States, but in communities with low vaccination rates, this method can allow poliovirus to mutate, leading to the spread of vaccine-derived poliovirus.

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