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.
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.
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.
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!!
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.
These days, walking into any major cancer centre looks rather different to a few years ago, because you are likely to see not only ordinary examination rooms, equipment, and chemotherapy suites, but also massage rooms, yoga mats, and possibly even a music therapy room.
This is the world of Complementary and Alternative Medicine. More and more recent research now supports complementary treatments such as Acupuncture, Yoga, and some diet supplements as good ways to relieve some of the side-effects of Chemotherapy Treatments.
Treatment centres that offer complementary options, as well as the amount of individuals taking advantage of them, have increased dramatically across the globe in recent years, with some studies showing that around 50% of all people undergoing cancer treatment use some kind of complementary option.
Most of the complementary treatments recommended by medical doctors have few or no side-effects, according to the director of medical content at the American Cancer Society, Ted Gansler, MD, who states that it is fine to try Music Therapy or Meditation, for example, while you follow your standard treatment plan.
When Children with Cancer have to undergo Radiation Treatment, they often get scared or nervous because they do not have an understanding of the process and the machines involved.
To remedy this, young children are usually given a general anaesthetic, even though the long-term side effects are still unknown.
Instead of relying on anaesthesia, Danielle Crump, BSN, RN, worked to develop the Paediatric Training Program within the Radiation Department of Johns Hopkins Hospital.
This initiative saves time and money while avoiding any risks or complications that might come from administering anaesthesia to a paediatric patient.
The Dempsey Center is a leader in Quality of Life care for individuals and families impacted by cancer. Founded in Lewiston, Maine by actor Patrick Dempsey, the Dempsey Center provides a personalised, holistic and integrated approach to cancer prevention, education and support.
All services are provided at no cost to anyone impacted by cancer regardless of their socioeconomic circumstances or where they receive their medical treatment.
The inspiration for the Dempsey Center was Patrick’s mother, Amanda, who was diagnosed with ovarian granulosa tumour cell cancer on August 19, 1997. Throughout her 12 recurrences over the next 17 years, Amanda was resolute in her mission to maintain a positive attitude, proactively fight her disease, and above all, have hope.
As Amanda’s cancer journey unfolded, her loved ones began to realize how much a cancer diagnosis impacts the entire family. Therefore, in 2007 Amanda’s son Patrick Dempsey, approached Central Maine Medical Center with the concept of creating a local cancer support center.
Children’s Hospital Los Angeles Launches OncoKids – A Comprehensive DNA and RNA Paediatric Cancer Panel
A team of investigators at Children’s Hospital Los Angeles recently launched OncoKidsSM, a next-generation sequencing-based panel specifically designed for paediatric cancers.
The Children’s Hospital Los Angeles (CHLA) OncoKidsSM cancer panel is a primer-based target enrichment, next-generation sequencing assay designed to detect diagnostic, prognostic and biologic markers for targeted therapy across the spectrum of pediatric cancers. These cancers include leukaemias, sarcomas, brain tumours and embryonal tumours. OncoKidsSM is a targeted gene panel intended to guide the diagnosis and treatment of cancer in pediatric patients based on the genomic alterations specific to their tumor.
The OncoKidsSM panel was developed by a team comprised of laboratory geneticists, oncologists and pathologists.
In contrast to adult cancers, which may contain hundreds of sequence alterations, paediatric malignancies may develop from a very small number of mutations, only some of which overlap with the types of mutations seen in adult cancers.
Children with Cancer generally have many problems caused by their cancer and by the cancer treatments they are undergoing, such as Chemotherapy and Radiation Therapy, including losing weight, inability to eat or swallow, and an impaired immune system exactly at the time that they need everything they can get to fight this devastating disease.
Part of the answer to these problems may lay in a nutrient-loaded porridge that was developed by the late Dr Basil Kransdorff, a South African doctor, specifically to cater to feeding HIV patients and babies.
The late Dr Basil Kransdorff and wife Rose’s work helping an NGO called CARE (Community AIDS Response) at the Joburg General Hospital, led to a worldwide debate on Food Security vs Nutrition Security.
Back in 2000 there was no medication and Doctors were telling patients diagnosed with HIV to go home, eat a healthy well-balanced diet and prepare to die. It was a difficult time when little was known about treating those living with HIV.
In a Facebook Post last week, we shared with you the frightening news that Cancer Patients in Kwazulu Natal in South Africa would henceforth have to relocate to another province or die as the last cancer specialist in Durban has resigned.
As of the close of business on Friday‚ there will not be a single cancer specialist doctor employed at any state hospital in Durban – and only two will be left in KwaZulu-Natal.
This shocking development leaves hundreds – if not thousands – of cancer patients in KwaZulu-Natal’s biggest city facing clinical uncertainty and staring the possibility of death squarely in the face. It follows the resignation of the city’s last state oncologist‚ whose last day is Friday.
At least two cancer patients’ families have attributed their untimely deaths to the non-functional cancer treatment equipment at Addington‚ according to a statement released ahead of a march by doctors in Durban. Both patients were reportedly referred to Inkosi Albert Luthuli hospital as oncology machines at Addington were allegedly broken. But because of excessively long waiting lists‚ they died before they could be treated.
Democratic Alliance MPL Dr Imran Keeka said the party had submitted a complaint to the SA Human Rights Commission in February last year about the collapse of the oncology service.
He said a report‚ which has not been made public yet‚ was forwarded to him and the respondents‚ KwaZulu-Natal Health MEC Dr Sibongiseni Dhlomo‚ the KZN Department of Health‚ and officials at Addington and Inkosi Albert Luthuli.
“Because the report cannot be made public as yet‚ the contents cannot be divulged. The DA is hopeful that the unchanged report is made public very soon‚” he said.
Fortunately this week we can bring you some slightly better news…
Following onto yesterday’s post, “Can a Mediterranean Diet Protect Against Cancer?” we are bringing you some great Mediterranean Diet recipes across the board today. Enjoy!
Individuals who follow the Mediterranean Diet have a longer life expectancy and lower rates of chronic diseases than do other adults.
The Mediterranean diet emphasises plant-based foods, such as fruits and vegetables, whole grains, legumes and nuts. It replaces butter with healthy fats, such as olive oil and canola oil, and uses herbs and spices instead of salt to flavor foods.
Red meat is limited to no more than a few times a month, while fish should be on the menu twice a week.