Causes, Risk Factors, and Prevention of Childhood Brain and Spinal Cord Tumors

What causes brain and spinal cord tumors in children?

Generally speaking, “cancer” is a broad name for a condition in which cells in a particular part of the body begin to malfunction. They begin to grow, divide, and replicate more quickly than normal cells, and/or they do not die as normal when they are worn out or damaged. When these abnormal, or “cancerous”, cells originate in the brain or the spinal cord, they usually form a clump or a mass known as a tumor. As the cancerous cells continue to replicate, the tumor grows until it begins to cause damage to the brain and/or the spinal cord.

Scientists are still trying to learn exactly why some cells grow, function, and die normally, while others grow abnormally and develop into a brain or spinal cord tumor. Brain and spinal cord tumors are most likely caused by mutations (random changes) in the DNA within each cell (our DNA provides instructions governing the function of each cell in our body, and ultimately how our body looks and functions as a whole). Specifically, scientists believe that mutations to two specific types of genes may be the ultimate cause of brain and spinal cord tumors in children: oncogenes control when cells grow and divide and tumor suppressor genes slow down cell division and instruct cells to die at the proper time. Whether inherited from parents or spontaneous and random, mutations to these particular genes may cause cells to malfunction and ultimately become cancerous.

Ultimately, however, scientists do not know why these mutations occur, especially in children. While lifestyle choices such as smoking can cause genetic mutations (and thus cancer) in adults, there are no known lifestyle risks associated with childhood brain and spinal cord tumors in children. Unfortunately, the genetic mutations at the root of the tumor growth are simply random changes that cannot be predicted or prevented.

Are there risk factors for brain and spinal cord tumors in children?

A “risk factor” is anything that increases an individual’s chances of developing a disease like a brain or spinal cord tumor. As noted above, most cases of brain and spinal cord tumors in children appear to be caused by random genetic mutations without a known cause. There are very few known risk factors associated with this type of childhood cancer. The only two well-established risk factors are radiation exposure and certain rare inherited genetic conditions.

  • Radiation exposure: exposure to large amounts of radiation is known to cause some types of cancer, including brain and spinal cord tumors in children. Now that this danger is known, the medical community takes active steps to avoid exposing the brain and central nervous system of children to radiation unless absolutely necessary. In some cases, radiation may be required as part of treatment for another type of cancer; in these cases, the benefits of treating one type of cancer must be weighed against the potential risk of developing a brain or spinal cord tumor in the future.
  • Inherited genetic conditions: in less than 5% of cases of childhood brain and spinal cord tumors, children have an inherited genetic condition that may increase their risk of developing a tumor. These genetic syndromes themselves are exceedingly rare, and may include:
  • Neurofibromatosis type 1 (von Recklinghausen disease)
  • Neurofibromatosis type 2
  • Tuberous sclerosis
  • Von Hippel-Lindau disease
  • Li-Fraumeni syndrome
  • Gorlin syndrome (basal cell nevus syndrome)
  • Turcot syndrome
  • Cowden syndrome
  • Hereditary retinoblastoma
  • Rubinstein-Taybi syndrome

Can the development of brain and spinal cord tumors in children be prevented?

Can the development of brain and/or spinal cord tumors in children be prevented? This is a question many parents will ask themselves upon receiving the terrible diagnosis that their child has a brain or spinal cord tumor. The answer is always “no”. There is no known way to prevent or protect against brain or spinal cord tumors, and absolutely nothing that parents or guardians could have done to prevent this disease.

Source: Causes, Risk Factors, and Prevention of Childhood Brain and Spinal Cord Tumors

Forecast of Cancer Research and Treatment Advances in 2018

Forecast of Cancer Research and Treatment Advances in 2018

2017 saw many “firsts” in the oncology community, in the form of several revolutionary advances in the research and treatment of cancer, including  the U.S. Food and Drug Administration (FDA) approval of an immunotherapeutic to treat patients based on biomarkers rather than the site of tumour origin; the approval of the first CAR T-cell immunotherapy; and the approval of a comprehensive next-gen companion diagnostic test to identify the right patients for the right molecularly targeted therapeutic.

In 2017, the FDA also approved the FoundationOne CDx test, which can detect genetic mutations in 324 genes and two genomic signatures in any solid tumour type, and the first “biosimilar” cancer drugs, which could potentially help drive down the costs of some cancer treatments.

While immunotherapies lead to long-lasting responses for some patients, a sizable portion of patients do not respond to these agents; some patients who respond ultimately develop resistance; and we still do not have precise biomarkers to predict who will respond and who will not. The same can be said about targeted therapies, where challenges with treatment resistance continue to be a major roadblock. Above all, patients from underrepresented and underserved communities quite often do not benefit from cancer prevention, diagnosis, and treatment advances.

Recently, several experts in the fields of immunotherapy, precision medicine, and prevention and disparities research shared where they thought  the cancer research community is headed next and what major accomplishments we might expect in 2018 to take us closer to conquering cancer:

Immunotherapy Advances in 2018

We are starting to define cancers based on what their genetics tells us and how the immune system sees them,” says AACR President-Elect Elizabeth M. Jaffee, MD.

Jaffe is the Dana and Albert “Cubby” Broccoli professor of oncology and professor of pathology at Johns Hopkins University School of Medicine and the Sidney Kimmel Comprehensive Cancer Center at Johns Hopkins, and associate director of the Bloomberg~Kimmel Institute for Cancer Immunotherapy at Johns Hopkins

She predicts that 2018 will see approval of anti-PD1/PDL1 and anti-CTLA4 antibody therapeutics, as single agents or as combinations, for smaller subsets of different cancers.

We are going from treating melanoma or lung cancer to treating smaller subsets of genetically linked cancers that have a high mutational burden, where anti-PD1/PDL1 antibodies work very well,” notes Jaffee. She predicts that we might see more biomarkers associated with the immunotherapeutics being approved, in addition to microsatellite instability (MSI)-high tumours.

Jaffee added, among other things, that “We are going to see more immunotherapy combinations being approved this year. I think we are going to see more of that but not just with those two types of antibodies but perhaps with other inhibitors of the immune response. There is a lot of good science coming out right now, and I think we have the right tools to follow up on these advancements to make noticeable progress.”

Precision Medicine Advances in 2018

For a while now, we have been using approaches of association – application of statistics to associate an event, such as a mutation in the tumour, with a specific outcome. One of the things that’s going to happen in the next couple of years is that we are going to see a transition from such purely associative approaches to approaches that are more and more model-based, which can provide us with greater ability to analyse multi-dimensional omics data to identify the key mechanistic dependencies of cancer cells,” says Andrea Califano, PhD, Clyde and Helen Wu Professor of Chemical Systems Biology at Columbia University Medical Center. “

Another thing to look for in the near future are more integrative approaches to precision oncology, according to Califano. “We have all been infatuated with the idea that there may be a single magic bullet for solving the cancer problem; for instance by using targeted therapy or immunotherapy approaches, but such views are “rather simplistic,” Califano cautions.

Cancer is a complex disease requiring equally complex solutions that can only be achieved by embracing an integrative and quantitative approach.” Califano speculates that integrating mutation-based targeted therapy and immunotherapy approaches with complementary approaches, such as RNA- and proteomic-based ones, is the next logical step for making precision oncology more “precise” and ultimately more valuable to the patient.

One of the most compelling ‘big things’ emerging in the current research landscape is the use of single-cell technologies,” notes Califano, who also says that  these approaches are going to revolutionise the way we think about cancer.

Califano says that liquid biopsies are becoming integral to the landscape of precision oncology; liquid biopsies can potentially detect relapse months earlier than currently possible with traditional methods, such as imaging. This allows the oncologist to switch treatment before the tumour has a chance to become further differentiated, adding to our ability to better control this disease, he says.

Califano also commented on the challenges with utilising artificial intelligence (AI) in assisting physicians with identifying the right treatments for patients.

The complexity of biology requires novel paradigms for analysing and interpreting large data sets, both from a genomic perspective and from a computational analysis perspective, and I am very excited about the possibilities and the direction the field is taking to ultimately individualize cancer care on a truly quantitative and predictive basis,” Califano says.

Advances in Addressing Cancer Prevention and Health Disparities in 2018

We have made some progress in addressing cancer health disparities but we still have a long way to go,” says John Carpten, PhD, professor and chair of the Department of Translational Genomics, professor in the Department of Urology, and director of the Institute of Translational Genomics at Keck School of Medicine at the University of Southern California.

We are finally seeing a time where there are significant talks between social/behavioural scientists and basic/translational scientists in embracing interdisciplinary approaches to constructively address cancer disparities,” adds Carpten, who is a member of the AACR Minorities in Cancer Research committee.

I think that in the coming years, we will see more studies that integrate data relevant to environmental exposures with molecular data to better understand the effect of environment and stress on cancer, particularly in underrepresented communities,” noted Carpten.

While it is well recognized that factors related to race, socioeconomic status, and environmental factors influence cancer health disparities, there is a significant dearth of information on the biology of cancer for patients from underrepresented communities, such as African-American and Latino populations; this is despite the fact that many cancers, such as prostate cancer, triple-negative breast cancer, colorectal cancer, bile duct cancer, pancreatic cancer, and multiple myeloma, disproportionately affect these populations, says Carpten.

Much of the basic research, including genomic data that populates currently available large databases, predominantly includes patients of European descent, Carpten notes. “We need to do a better job of providing information on more diverse patient populations when it comes to molecular profiling,” he adds.

We need to see significant improvements in clinical trial accrual, especially in large phase III trials testing new therapies focused on cancers that disproportionately affect minorities, Carpten notes. He says that this has been a recurring problem for decades and adds that it is time to find new and improved ways to include clinical investigators who are knowledgeable in recruiting patients from underrepresented populations into clinical trials. “We have to do a better job of including advocates from the community into the clinical trial recruitment platforms,” he says.

There is this unfortunate reality that as we continue to battle with nationalized health care and the best way to implement it, we will also continue to see a greater divide among communities in access to quality and innovative health care,” Carpten notes.

This is another incredible reason why we have to continue to not only engage but involve minority communities in these processes, and that happens to be a strength of the AACR. I hope to see this organization continue to be a leader in galvanizing advocacy and survivorship communities and integrating them into the scientific community, particularly in relation to translational research and clinical trials,” Carpten says.

Editor’s note: In a further effort to reduce cancer health disparities, AACR President Michael A. Caliguiri, MD, is spearheading 2020 by 2020, a collaborative effort to bring AACR Project GENIE, ORIEN, PELOTONIA, and the Biden Foundation together to sequence 2,020 cancer genomes from African-American/Black cancer patients by 2020. This effort is expected to contribute to the assembly of a national cancer data ecosystem that has mined patient data to predict future patient outcomes in minority and medically underserved populations.

Source: The above is an extraction from an article, Experts Forecast Cancer Research and Treatment Advances in 2018,  published January 3, 2018 by Srivani Ravoori, PhD on blog.aacr.org, the American Association for Cancer Research’s official blog.”

Source: Forecast of Cancer Research and Treatment Advances in 2018

What does The RACE for Children Act Mean?

What does The RACE for Children Act Mean?

Most paediatric cancer patients are subjected to treatments that are not designed for a child’s developing body.

This is because there has been too little research into Childhood Cancer and too few new medications to treat childhood cancer.

According to the Coalition against Childhood Cancer, a mere 4 % of America’s  National Cancer Institute’s budget is dedicated to paediatric cancer research – it is even less in some other countries.

Parents and advocates say that is not enough when you consider how much life these children stand to lose.

Treatment options for Children with Cancer have been stagnant for decades, with only 3 new drugs developed specifically to treat childhood cancers since 1980, compared to the 190 new treatments that have been approved for adults in the last 20 years alone.

The Research to Accelerate Cures and Equity for Children Act that was signed into U.S. law during August this year aims to change that.

The RACE for Children Act means that new cancer drugs will be developed not only for adults – but for children too.

With the RACE for Children Act as law:

  • Children with cancer will have many more novel drugs and clinical trials open to them.
  • Paediatric oncologists will have new information about which cancer drugs might help their paediatric oncology patients, what the dosage of the drugs should be, and whether the drugs are safe.
  • Companies developing cancer drugs will, as standard practice, plan to develop their drugs for children with cancer.

There are around 900 drugs in the pipeline for adult cancers, but few are ever studied for children.

Taylor Hurst was diagnosed at 5 years old with T-cell leukaemia (T-cell acute lymphoblastic leukaemia (T-ALL) is a specific type of leukaemia. It is a variant of Acute Lymphoblastic Leukaemia (ALL), with features similar to some types of lymphoma) – on January 16, 2016, Taylor became one of the nearly 15,000 people under the age of 20 who contract cancer every year in the United States, according to the Centers for Disease Control.

For Michelle Hurst, Taylor’s mother, there’s no question that the lack of paediatric cancer treatments was a calculated decision by pharmaceutical companies, which she thinks stand to lose money by creating more effective oncology treatments for kids.

With the advancements in technology these days, there is so much that can be done, but everything is just money,” Hurst said. “The pharmaceutical companies think that children are not profitable. Kids would get significantly lower dosage amounts than adults.”

As it stands now, Taylor has been on the same treatment regimen that her grandfather was when he was diagnosed with cancer in his 50s. And Taylor’s case is not the exception—many paediatric cancer patients are subjected to treatments that are not designed for a child’s developing body.

According to Dr. Jolly, these harsh treatments leave paediatric cancer survivors with a number of lasting side effects, “such as decreased fertility, a weakened heart, increased risk of obesity and more frequent secondary cancers.”

This was the case with Taylor Steele, 17, who died in 2011, two days before she would have started her senior year as student body president at Liberty Ranch High School in Galt. Diagnosed at 3 years old with nephroblastoma, a type of kidney cancer known as Wilms Tumour, she survived treatment, only to be diagnosed with ovarian cancer at the age of 12.

The RACE for Children Act is an update to the 2003 Paediatric Research Equality Act, or PREA, a federal measure that required pharmaceutical companies to ensure that medications designed for adults are safe and effective in treating children. Because children are often afflicted by different types of cancers than adults, PREA did not cover many treatments, putting that R&D burden on non-profit organisations.

Recent research however, suggests that paediatric cancers show some of the same molecular targets as adult cancers. Therefore, it’s likely that the pharmaceuticals being researched for adults will be able to target paediatric cancers after more focused research, according to the office of Sen. Michael Bennet, who sponsored the new law.

The RACE law intends to close the loophole in research regulations and ensure that these new findings are being put to use.

Childhood cancer patients face some unique challenges in addition to those that adult cancer patients have,” said Dr. Kent Jolly, a paediatric haematologist-oncologist at the Kaiser Permanente Roseville Medical Center.

Scott Lenfestey, aka Honored Kid Scott, was diagnosed with Acute Lymphoblastic Leukaemia in November 2011 at age 3, and underwent 3 ½ years of Chemotherapy Treatment during which he took  more than 1,500 pills. His father, a doctor who knows that the hardest thing to do is to walk into a room and say there is nothing more we can do for your child, saw drastic and terrifying changes in his son’s body such as hairloss and mouth ulcers, weight loss and more.

Fortunately Scott had one of the more curable types of cancer;  he survived the treatment,  has been busy rebuilding his strength post-treatment, and recently completed two kids’ triathlons! Scott is about to start 3rd grade and has also become an active childhood cancer advocate, speaking at various events on behalf of kids with cancer.

Some specific cancers occur exclusively in children, so only specific paediatric research will improve the treatment of those diseases. … Many new drugs also lack the data on effectiveness, safety and proper dosage for use in children, because the paediatric testing process simply hasn’t been done.”

The hope that the RACE Act provides to so many childhood cancer families is priceless. This legislation will open the door for cutting-edge treatments and precision medicines that could make all the difference for children battling this devastating disease.

 

Source: What does The RACE for Children Act Mean?

Benefits of Foods by Colours #BraveFoods

Benefits of Foods by Colours #BraveFoods

Foods can be divided into categories based on their colours and each category has a collective set of health benefits. This not only makes foods interesting, but also helps remember which food is good for which health aspect.

Eating a variety of colourful food provides vitamins, minerals, and antioxidants to nourish your body that can’t be replicated in a supplement.

So what does colour have to do with diet anyway? One word: phytochemicals. These substances occur naturally only in plants and may provide health benefits beyond those that essential nutrients provide.

Colour, such as what makes a blueberry so blue, can indicate some of these substances, which are thought to work synergistically with vitamins, minerals, and fibre (all present in fruits and vegetables) in whole foods to promote good health and lower disease risk.

According to the Produce for Better Health Foundation (PBH), phytochemicals may act as antioxidants, protect and regenerate essential nutrients, and/or work to deactivate cancer-causing substances.

Benefits of Foods by Colours

Healthy eating advocates often tell people to “eat the rainbow”… You may have heard the phrase “eat the rainbow” before—and not just in Skittles commercials. Dietitians, doctors and other health and wellness advisors use the phrase to get people—especially children—to incorporate more fruits and veggies in their diets.

Foods are broadly divided into six categories based on their colours

White – Immune Support & Bone Health

Just because a food is white, doesn’t mean that it isn’t nutritious.  In fact, white foods such as low-fat (1%) or fat-free milk, yogurt, and some cheeses are packed with vitamin D, calcium, and phosphorus.

White fruit & veg are high in dietary fibre, helping to protect you from high cholesterol, and antioxidant-rich flavonoids, such as quercetin, which is abundant in apples and pears.

These vitamins and minerals aid in bone health and may help us maintain a healthy body weight.  Yogurt also contains probiotics, which are bacteria that confer a health benefit, like promoting digestive health or supporting immune function.

While garlic & onions help reduce the risk of cancer in stomach, colon & rectum, white beans & potatoes help lower blood cholesterol levels. Mushrooms are known to provide the important nutrients and cauliflower contains antioxidants & is also beneficial for women who are pregnant.

They may also lower your risk of stroke, according to a group of Dutch researchers who published a study with the American Heart Association in 2011. After a 10-year diet study, they found that people with a high intake of white fruits and vegetables had a 52% lower risk of stroke.

Examples: Garlic, onions, white beans, potatoes, mushrooms and cauliflower, milk, cheese, yoghurt and cucumbers

Green – Detoxification & Cancer-Fighting

The natural plant pigment chlorophyll colours green fruits and vegetables. In our system, the green foods represented those foods rich in isothiocyanates, which induce enzymes in the liver that assist the body in removing potentially carcinogenic compounds.

Cruciferous veggies such as broccoli and cabbage contain the phytochemicals indoles and isothiocyanates, which may have anticancer properties.

Green vegetables are also excellent sources of vitamin K, folic acid, potassium, as well as carotenoids and omega-3 fatty acids. Their Vitamin K content helps your blood to clot properly.

Sulforaphane, a phytochemical present in cruciferous vegetables, was found to detoxify cancer-causing chemicals before they do damage to the body.

These foods’ antioxidant vitamins, particularly vitamins C and E, may lower your risk of chronic diseases. They provide the phytonutrients lutein and zeaxanthin, which may protect you from vision loss due to eye diseases such as macular degeneration

Examples: Broccoli, cabbage, bok choy, Brussels sprouts, Peas, spinach, green beans, capsicums, kiwi, and green tea.

Yellow – Beauty & Eye Health

A variation of the green colour category, these foods exhibit a richness in lutein, which is particularly beneficial for eye health. They also contain a high amount of vitamin C.

Yellow fruit & veg are full of carotenoids and bioflavonoids which represent a class of water soluble plant pigments that function as antioxidants.

Yellow food is extremely rich in retinol, a type of Vitamin A1 that acts upon acne and wrinkles in order to reverse the damage.

Studies suggest that these bountiful nutrients will help your heart, vision, digestion and immune system. Other benefits of naturally yellow foods include maintenance of healthy skin, wound healing, and stronger bones and teeth.

When you seek out and consume yellow-coloured foods, you nourish your body, mind and soul with many of Mother Nature’s health benefits.

Examples: Avocado, kiwifruit, spinach and other leafy greens, pistachios, Banana, yellow capsicum, squash and corn.

Orange – Cancer Prevention & Eye Health

Orange foods are rich in beta-carotene, which are particularly good antioxidants. They are good for the heart, protect our eyes and also boost our immune system.

Beta-Carotene: The best-known nutrient in orange foods is beta carotene, a powerful antioxidant which gives sunny fruits and vegetables their brilliant colour. Beta carotene is not only good for eye health it can also delay cognitive aging and protect skin from sun damage.

Vitamin A: Beta carotene is a precursor for vitamin A, which is commonly referred to as retinal, retinol and retonoic acid. Vitamin A is important for night vision, as an antioxidant can neutralise the damaging free radicals in the body, and is crucial in the health of your immune system.

Vitamin C: Orange foods are chockfull of vitamin C, an antioxidant which boosts the immune system, protects against cardiovascular disease and helps rebuild collagen in the skin.

Examples: Carrots, mangos, cantaloupe, winter squash, sweet potatoes, pumpkins, apricots.

Red – Heart Health & Cancer-Fighting

Lycopene is the predominant pigment in reddish fruits and veggies. A carotenoid, lycopene is a powerful antioxidant that has been associated with a reduced risk of some cancers, especially prostate cancer, and protection against heart attacks.

Look for tomato-based products for the most concentrated source of this phytochemical.

Although some nutrients, such as vitamin C, are diminished with the introduction of heat, the benefits of eating produce are not dependent on eating raw foods. In fact, cooking enhances the activity of some phytochemicals, such as lycopene. Obtaining optimal benefit from the nutrients in food, especially produce, depends on proper selection, storage, and cooking of the produce.

Cooked tomato sauces are associated with greater health benefits compared with the uncooked version because the heating process allows all carotenoids, including lycopene, to be more easily absorbed by the body.

In addition to vitamin C and folate, red fruits and vegetables are also sources of flavonoids, which reduce inflammation and have antioxidant properties. Cranberries, another red fruit [whose color is due to anthocyanins, not lycopene], are also a good source of tannins, which prevent bacteria from attaching to cells

Examples: Tomatoes and tomato products, watermelon, pink grapefruit, guava, cranberries, Red chillies, red cabbage, kidney beans, cherries, strawberries, beets, red capsicum, raspberries, cherries, tomatoes and apples.

Blue/Purple – Longevity & Antioxidant

The blue/purple hues in foods are due primarily to their anthocyanin content; the darker the blue hue, the higher the phytochemical concentration. Blueberries are considered to have the highest antioxidant activity of all foods.

The anthocyanins that give these fruits their distinctive colours may help ward off heart disease by preventing clot formation.

Purple and blue foods also contain resveratrol which contributes greatly to your arterial walls (cleansing your blood circulation).

They also contain flavonoids and ellagic acid, compounds that may destroy cancer cells, according to the American Institute for Cancer Research.

Purple foods fight ulcers, help kill cancer, prevent urinary tract infection and are good for the heart & the liver.

Examples: Eggplant (especially the skin), blueberries, blackberries, prunes, plums, pomegranates

Eating the Rainbow” is a good idea, but only as good as eating a balanced, healthful diet full of fresh foods.

Source: Benefits of Foods by Colours

Important Questions about Childhood Cancer

Important Questions about Childhood Cancer

Paediatricians are skilled at distinguishing the usual bumps and pains from those that should cause concern, and can generally sense which symptoms truly need evaluation and will order tests based on the character, duration and severity of symptoms in order to properly diagnose children.

Most paediatricians are also very instinctual, and will send a child to a specialist if they suspect cancer. Diagnosis can only be done after several tests, which could include X-Rays, Scans, Blood Tests, or a Biopsy. This process may take several days; that time is sometimes necessary to arrive at an accurate diagnosis. A multi-disciplinary team of Paediatric specialists, including an oncologist, surgeon, radiation oncologist, pathologist and radiologist, will evaluate the test results, make a final diagnosis and design a treatment plan.

When a child is diagnosed with cancer, the parents and the child are usually in shock over the diagnosis, and this can make them feel totally lost and a sea because the general Jane or Joe Public does not really know that much about cancer, especially Childhood Cancer.

Their lives and all that they thought they knew has changed within a mere moment – they have to digest the bad news and the fact their lives are about to be taken over by this disease that can devastate whole families in so many ways.

Apart from the emotional, physical and financial stress, one also has to learn and deal with a lot of new medical terminology and scary and unfamiliar tests.

Questions a Parent Should Ask

For you as apparent to understand everything, it is important that you ask as many questions as necessary in order to understand exactly what is going on with your child and what the way forward is.

Your child’s doctor and the treatment team will give you a lot of details about the type of cancer and possible treatments. Ask your doctor to explain the treatment choices to you. It is important for you to become a partner with your treatment team in fighting your child’s cancer.

You may find it hard to concentrate on what the doctor says, remember everything you want to ask, or remember the answers to your questions. Here are some tips for talking with your doctor about childhood cancer:

  • Write your questions in a notebook and take it to the appointment with you. Record the answers to your questions and other important information.
  • Record your conversations with your child’s health care providers.
  • Ask a friend or relative to come with you to the appointment. The friend or relative can help you ask questions and remember the answers.

Regarding Tests

  • Why is the test/procedure being done?
  • How will the results influence treatment?
  • What will your child experience during the test/procedure?
  • What can you do to help prepare your child?
  • What if any medicines could reduce pain during the test/procedure?
  • Are there risks to performing the test/procedure?

 Regarding the Diagnosis

  • What kind of cancer does my child have?
  • What is the stage, or extent, of the disease?
  • Will any more tests be needed? Will they be painful? How often will they be done?
  • What is the cause of “x” and are there any genetic associations (i.e. implications for siblings and future children)?
  • What could they have done differently to prevent “X”?

Regarding Treatment Choices

  • What are the treatment choices? Which do you recommend for my child? Why?
  • Would a clinical trial be right for my child? Why?
  • Have you treated other children with this type of cancer? How many?
  • What are the chances that the treatment will work?
  • Where is the best place for my child to receive treatment? Are there specialists – such as surgeons, radiologists, nurses, anaesthesiologists, and others – trained in paediatrics? Can my child have some or all of the treatment in our home town?
  • What is the difference between standard of care treatment and participation on a clinical trial?

Regarding the Treatment

  • How long will the treatment last?
  • What will be the treatment schedule?
  • Whom should we ask about the details of financial matters?
  • Will the treatment disrupt my child’s school schedule?
  • When is it ok to use alternative medications or treatments?

Regarding Side Effects

  • What possible side effects of the treatment can occur, both right away and later?
  • What can be done to help if side effects occur?

Regarding the Treatment Location

  • How long will my child be in the hospital?
  • Can any treatment be done at home? Will we need any special equipment?
  • Does the hospital have a place where I can stay overnight during my child’s treatment?

Regarding School and Other Activities

  • Is there a child-life worker specialist (a professional who is responsible for making the hospital and treatment experience less scary for the child) to plan play therapy, schoolwork, and other activities?
  • When can my child go back to school?
  • Are there certain diseases my child cannot be around? Should I have my child and his or her siblings immunised against any diseases?
  • Will my child need tutoring?
  • What does treatment mean as far as scheduling work and clinic appointments for the parents and/or caretakers?
  • Is information available to give to the school system about my child’s needs as he or she receives treatment?

Regarding Support

  • What are the support networks available for the family, patient and siblings?

While it is important to know as much as possible about your child’s cancer and there is tons of information available online, please make sure that you only get information from RELIABLE and VERIFIED sources such as Paediatric Oncological Hospitals, Government websites or non-profit Children’s Cancer Organisations, as there are many sites on line that either give out incorrect information or biased information (they are affiliated to or being paid by a certain company, often a pharmaceutical company, or an individual trying to sell a certain product or treatment regimen)

 

Source: Important Questions about Childhood Cancer

U.S. Senate Passes Bill to Improve Cancer Drugs for Children

U.S. Senate Passes Bill to Improve Cancer Drugs for Children

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!!

The Senate on has just overwhelmingly passed legislation requiring the pharmaceutical industry to expend more resources on treatment for childhood cancers. The bill, part of a larger measure reauthorising user fees imposed by the Food and Drug Administration, heads to President Trump for his expected signature.

Existing law directs companies to study the safety and efficacy of adult drugs on children unless the FDA gives them a waiver. Medicine developed to treat heart disease or diabetes for adults, for example, must also be tested for its use on children.

But when it comes to cancer, advocates say the FDA has too much latitude to exempt the industry from studying and developing help for kids. Federal regulators often have not required companies that invest heavily in the four major cancers — breast, prostate, lung and colon — to research how the treatments they develop for those adult-oriented diseases might assist in addressing childhood cancers.

Over the past 20 years, the FDA has approved about 190 new cancer treatments for adults but only three for children, said Sen. Michael Bennet, a Colorado Democrat who co-sponsored the provision with Florida Republican Sen. Marco Rubio.

That meant our kids continue to receive older treatment, some from the 1960s that often had harmful side effects and consequences that can last a lifetime,” Bennet said on the Senate floor.

At the same time, breakthrough treatments have become available for adults with better results and few harmful effects. While these treatments have great promise for kids, we’re not doing enough to explore that potential.”

Advocates cheered the bill’s passage.

Today’s Senate vote is a giant leap forward in the fight against childhood cancer,” said Jorge Luis Lopez, a Miami attorney who sits on the board of the American Cancer Society. “We urge Donald Trump to sign this legislation into law and unleash American innovation and creativity for the health and well-being of all our children.”

On Wednesday, Rubio was on the Senate floor sharing a story about Bella Rodriguez-Torres, the 10-year-old girl from Miami whose 2013 death helped get him involved.

She was a classmate of my nephew in grade school,” Rubio said. “And she lost her battle with cancer. Her father has been a tireless advocate on this cause. He moved heaven and earth to try to reach a point where they could find a cure for her. That did not come in time and he’s now made it the mission of his life to honor her life by continuing this work. So we’ve all been impacted in some way.”

Source: U.S. Senate Passes Bill to Improve Cancer Drugs for Children