When Deborah Mayer, PH.D., RN, AOCN, FAAN, was a young oncology nurse, she met a patient with sarcoma who clearly expressed her expectations for care.
“I expect my doctor to try to cure me,” the patient told Mayer, who is now a member of the UNC Lineberger Comprehensive Cancer Center and a professor in the School of Nursing at UNC Chapel Hill. “But if nobody has asked me how I slept or when I last moved my bowels, then the time you’re buying me is not worth living.”
Mayer took that conversation as a call to action, never forgetting the importance of symptom management.
Recently, she relied on her passion for and knowledge about the subject when she sat on former Vice President Joe Biden’s Blue Ribbon Panel that helped shape the Moonshot initiative, a national endeavour to make 10 years’ worth of progress in cancer prevention, diagnosis and treatment within half that time. The panel helped inform Biden’s task force and the National Cancer Advisory Board about what should be included in the Moonshot.
Jennifer Kranz was diagnosed with an especially aggressive form of a deadly childhood brain tumour, Diffuse Intrinsic Pontine Glioma (DIPG), on her 6th birthday in 2013, and died less than four months after being diagnosed.
Jennifer’s parents heard about the work of Stanford paediatric neuro-oncologist Michelle Monje, MD, PhD, who studies donated DIPG tumour tissue to understand how its biology might be targeted with new treatments during Jennifer’s illness, and during their final appointment at Lucile Packard Children’s Hospital Stanford, the Kranzes asked if they could donate their daughter’s tumour for this research after her death.
“They said ‘Yes, here is the paperwork,’ and we signed it,” Libby said. Then she realized the donation form asked only for consent to study the tumour on Jennifer’s brainstem, making no mention of the metastases that had spread to the frontal lobe of her brain and down her spine.
“But we want to donate all of it,” Libby, Jennifer’s mom told Sonia Partap, MD, Jennifer’s oncologist. The Stanford team made the arrangements, and Libby also asked Monje to try to figure out how Jennifer’s tumour had spread so fast.
Having a Child with Cancer in the house means that you are generally stressed and fatigued to the max! This also means that you do not have a lot of time for normal household duties, including cooking elaborate meals.
Added to this, a Child with Cancer very often either does not have an appetite or cannot eat certain foods due to their treatment, mouth sores, taste changes, lack of appetite and various other reasons, so what to do?
Nutrition is really important for a Child with Cancer as they need all the strength they can muster to fight off the monster that is cancer. This means that even if it is difficult to eat o they don’t have much of an appetite, they need nutrition to build up their immune systems.
Today we bring you some easy, quick and minimal-ingredient recipes that we are sure your child will enjoy (you might just enjoy them too, and remember is is just as important to keep your strength up!)
While Childhood Cancer is “relatively rare” with an incident rate of around 1 in 600, or 150 patients per million in South Africa, too many children with Cancer are dying needlessly because cancer, including Childhood Cancer, is not a priority in South Africa.
The cure rate for Childhood Cancer in high income countries is around 80% but childhood cancer survival rates in low-income countries may be as low as 10%.
This is extremely disturbing when one factors in that out of the 250 000 children diagnosed worldwide with cancer every year, 80% live in low and middle-income countries and 90% of childhood cancer deaths occur in low and middle-income countries.
This is partially due to a lack of awareness of Childhood Cancer which leads to late diagnosis, and partially due to many Childhood Cancer patients falling through the cracks when it comes to support services, which are sorely lacking from government.
Being a caregiver for a person with cancer takes its toll on one’s health, and even more so when the person with cancer is your child.
Caregivers of Children with Cancer (usually the mother) are faced with far more stress, as they usually have to give up their job, spend endless hours at their child’s bedside in the hospital – sometimes for weeks or even months at a time, make endless trips to doctors, clinics and hospitals, and still try to be there for the rest of the family. Childhood Cancer unfortunately often ends in divorce, which places even more of a burden on the mother and the stress becomes far worse and can often turn into depression or burnout.
While it is natural to want to stay by your sick child’s side and meet the needs of their siblings and other family members – all at once, this is a virtually impossible task, and unless you give both your mind and your body a break once in a while, you could well end up with caregiver-burnout!
When one continuously cares for others while under tremendous stress, one can begin to feel that you’re in over your head and have little control over the situation – this can cause the stress to begin taking a toll on your health, relationships, and state of mind—eventually leading to burnout.
When you are burned out, it’s tough to do anything, let alone look after your ill child, which is why taking care of yourself is not a luxury; it is a necessity! There are plenty of things you can do to rein in the stress of caregiving and regain a sense of balance, joy, and hope in your life.
Researchers have discovered the mechanism by which a modified natural compound disrupts the formation of tumours’ blood vessel networks in Childhood Cancer Neuroblastoma.
Neuroblastoma occurs when malignant cancer cells form in the specialised nerve cells of the sympathetic nervous involved in the development of the nervous system and other tissues.
Neuroblastoma most commonly occurs in one of the adrenal glands situated in the tummy or in the chest, neck, abdomen, pelvis or the nerve tissue that runs alongside the spinal cord. The adrenal glands are specialised glands that release hormones that help the body respond to stress and maintain blood pressure.
The international study, led by scientists at Children’s Cancer Institute and UNSW, is published in Scientific Reports and paves the way for less toxic treatments for Neuroblastoma, a Childhood Cancer with an average age of diagnosis of just one to two years old.
Revolutions in cancer treatment are being tested in HIV in the hopes it will bring the world closer to a cure.
The first-ever anti-HIV drug, AZT, was initially developed to fight cancer but was abandoned in preliminary testing. This breakthrough drug saved lives and offered hope to people with AIDS. Over two decades later, the fields of oncology and HIV are collaborating again in the search for a functional cure for AIDS.
“Why HIV cure and cancer?” asked Nobel Laureate Professor Françoise Barré-Sinoussi at a meeting in Paris last month. Renowned for co-discovering the HI virus in 1983, she said that the two had more in common that one would expect.
At a forum held shortly before the 9th International AIDS Society (IAS) Conference on HIV Science in late July Barré-Sinoussi said a collaboration between the two fields held promise towards finding a more sustainable solution to the current option for people living with HIV: daily treatment for life.
“Well we know, first of all, some people on long-term treatment develop cancer,” she explained. Secondly, she said that over the past five years there is “more and more data” showing similarities between tumour cells and those latently infected with HIV.
When a person’s antiretroviral treatment (ART) is working to suppress the amount of virus in the blood to below detectable levels (an undetectable viral load) a number of HIV-infected cells persist. These cells, latently infected cells, stop infecting other cells with HIV but they reactivate when a person stops taking ART. A group of latently infected cells is called an HIV reservoir – and it is this that scientists are trying to locate and destroy in the hopes of finding a cure.
Hola, Little Fighter Friends & Supporters – it is Friday again and we have survived the week, and what a week it was again in South Africa.
Time to forget about work and politics and to get some well-deserved rest and relaxation and re-energise ourselves for next week.
Winter is upon us and it is set to be a cold weekend in the Western Cape with snowfalls on the mountain peaks so some nice winter warmers are called for – the kind of food that “sticks to one’s bones” as our parents/grandparents would say….
We hope that you enjoy these recipes that we publish every week and look forward to some feedback as to whether you have tried them or not, whether your Child with Cancer enjoyed them, and also whether there are any recipes that you would like us to publish.
While many types of cancers have had improved survival outcomes over recent years due to new drugs and other clinical innovations, there are certain cancers that have not progressed appreciably in their survival rates or in developing new methodologies and drug protocols for decades.
Unfortunately, these cancers primarily affect children and young adults. Since the number of patients diagnosed with these deadly diseases annually is small compared to other types of cancers such as breast, prostate and colon cancer, they are treated as “orphan” diseases which translate into less emphasis by the drug companies and medical establishment in finding treatments and cures for these forms of cancer.
It is therefore up to dedicated researchers and grassroots support groups to “pick up the slack” and help those children afflicted with these deadly diseases by finding new drug protocols and techniques to stop the cancers from metastasising at worst or to stop the cancer cells from developing at best.
Up until now, drug companies have been free to decide whether to pursue treatments for paediatric cancers as part of their work on adult cancers or not, and this has led to a minimal amount of new drugs specifically for paediatric cancers being developed.
An estimated 2,000 children die of cancer annually, and the overall incidence of childhood cancer has been slowly increasing since 1975 – there has been a 13% rise in Childhood Cancer in the past 20 years alone.
Despite significant advances against certain pediatric cancers, including Acute Lymphoblastic Leukemia, there are still some types of cancer for which there are few or no effective treatments.
The truth is that new drug development in pediatric cancer is extremely slow, often lagging way behind adult treatments, and few compounds are designed specifically for children.
The sad truth is that Childhood cancers make up less than 1% of all cancers diagnosed each year, and that is is not much of a market for drug makers, who rack up an estimated $1.4 billion in out-of-pocket costs while bringing a novel drug to market.
They won’t have much choice going forward!!
We know that you as a parent are doing your best to help your Child with Cancer cope with fighting this devastating disease, spending hours at their bedside both at home and in the hospital, still trying to look after the rest of the family, and so much more, and that this takes everything you have.
We realise that trying to cook healthy meals is really difficult under the circumstances, especially when it is difficult for your Child with Cancer to eat, but good nutrition is paramount under the circumstances, which is why we try to make it easier by supplying you with easy, nutritious, cancer-fighting recipes.
Collated Childhood cancer statistics in sub Saharan Africa have been published for the first time as a monograph in the peer reviewed journal ecancermedicalscience, allowing researchers and policymakers a critical new insight into the impact of paediatric cancer across this region.
On the African continent, only South Africa operates a childhood cancer registry on the national level.
This new study brings together data from 16 of the smaller localised registers, which, as members of the African Cancer Registry Network (AFCRN), have been evaluated as achieving adequate coverage of their target population. The study has allowed for the collection of this scattered knowledge for the first time and presents it in an accessible format.
The cancers are classified according to the third revision of the International Classification of Childhood Cancer (ICCC-3) and recorded rates in Africa are compared with those in childhood populations in the UK, France, and the USA.
Free radicals are highly reactive chemicals that have the potential to harm cells. Free radicals are formed naturally in the body and play an important role in many normal cellular processes.
At high concentrations, however, free radicals can be hazardous to the body and damage all major components of cells, including DNA, proteins, and cell membranes. The damage to cells caused by free radicals, especially the damage to DNA, may play a role in the development of cancer and other health conditions.
Antioxidants are chemicals that interact with and neutralise free radicals, thus preventing them from causing damage. The body makes some of the antioxidants it uses to neutralise free radicals, but it also relies on external sources, primarily the diet, to obtain the rest of the antioxidants it needs. Fruits, vegetables, and grains are rich sources of dietary antioxidants.
Herbs and plants were the original treatments for many illnesses and injuries people faced. As such, cannabis or marijuana use dates back centuries. It popped up in Western medicine in the 19th century as a means of relieving pain, inflammation, and spasms.
Today, marijuana use can spark some serious debate, even when considered for medical use only. But regardless of how you feel about its use, more cancer patients are turning to marijuana for a number of reasons.
Marijuana is not legal for use everywhere and researchers have their own concerns about potential side effects. For some patients, however, the benefits can be invaluable as they go through treatment.
If you are anything like me, you have read many articles regarding various foods or nutrients that supposedly either increase or decrease the risk of cancer.
You will also find many articles that claim that certain foods are so-called ‘superfoods’ that can prevent or cure cancer merely by eating them.
While nature does contain certain natural remedies, and while eating or not eating certain foods may be good for one’s health, it is unlikely that specific ‘superfoods’, on their own, could directly affect the risk of cancer.
Unfortunately there are still those who insist on spreading stories about what is good, not good, what is carcinogenic, and what can/will or cannot/will not cause or cure cancer.
This article will hopefully bring you some clarity on some of the most talked-about foods or nutrients.