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How do I access a clinical trial?  


To join a clinical trial, or another study, you need to speak to your doctor first. Most specialists know about current studies and may recommend them to you. 

Clinical trials have inclusion (what you must have) and exclusion (what you can't have) criteria, which will determine if you can be part of a trial. This ensures participants in the trial are similar in factors such as age, type and stage of cancer, general health, and any previous treatments. Talk to your doctor about which clinical trials you may be eligible for. 

 

Read more about accessing clinical trials here.  

How do I access a clinical trial?  


To join a clinical trial, or another study, you need to speak to your doctor first. Most specialists know about current studies and may recommend them to you. 

Clinical trials have inclusion (what you must have) and exclusion (what you can't have) criteria, which will determine if you can be part of a trial. This ensures participants in the trial are similar in factors such as age, type and stage of cancer, general health, and any previous treatments. Talk to your doctor about which clinical trials you may be eligible for. 

 

Read more about accessing clinical trials here.  

What treatment is right for me? 


Treatment is based on many factors, including:  

 

  • Age, overall health and medical history 

  • Type, location and size of the tumour or tumours 

  • Likelihood of the tumour spreading or recurring 

  • Speed of tumour growth  

  • Tolerance for specific medications, procedures, or therapies 

 

Sometimes tumours that aren’t growing or spreading will be monitored closely, and not given any treatment until someone develops symptoms, or their symptoms change.  

 

Decisions about the best course of treatment are made with your medical team. As a patient, you have the right to accept or refuse any treatment offered. You may also want to get a second opinion from another specialist to confirm or clarify your doctor’s recommendations, or as reassurance that you have explored all options. 

 

You can read more about the treatments available here.  

What treatment is right for me? 


Treatment is based on many factors, including:  

 

  • Age, overall health and medical history 

  • Type, location and size of the tumour or tumours 

  • Likelihood of the tumour spreading or recurring 

  • Speed of tumour growth  

  • Tolerance for specific medications, procedures, or therapies 

 

Sometimes tumours that aren’t growing or spreading will be monitored closely, and not given any treatment until someone develops symptoms, or their symptoms change.  

 

Decisions about the best course of treatment are made with your medical team. As a patient, you have the right to accept or refuse any treatment offered. You may also want to get a second opinion from another specialist to confirm or clarify your doctor’s recommendations, or as reassurance that you have explored all options. 

 

You can read more about the treatments available here.  

My oncologist is prescribing a drug and I don’t understand why. 


The most important thing to always remember in your brain cancer treatment journey is that it is yours. You’re in charge and you get to make the decisions. Your treatment team are there to help suggest, prescribe and deliver the treatments that you decide to have. You have every right to ask, confirm and follow up about anything that you don’t feel comfortable with or don’t understand.  

There are many reasons a drug may or may not be prescribed to you. Genetic analysis of a brain tumour can help predict the way it will respond to certain treatments. The genetic makeup of a tumour, as well as location, size or other treatments you are receiving, will all play a factor in the effectiveness of certain drugs. Every person’s cancer is unique and something that works for you may not work for someone else.  

Developing a trusting relationship with your treatment team is key to feeling empowered in your conversations with them. This team could include your oncologist, surgeon, care coordinator, or other people involved in your medical care.

You have the right to ask for a second, third and fourth opinion, and to have as many conversations as required to ensure you properly understand your treatment.  

My oncologist is prescribing a drug and I don’t understand why. 


The most important thing to always remember in your brain cancer treatment journey is that it is yours. You’re in charge and you get to make the decisions. Your treatment team are there to help suggest, prescribe and deliver the treatments that you decide to have. You have every right to ask, confirm and follow up about anything that you don’t feel comfortable with or don’t understand.  

There are many reasons a drug may or may not be prescribed to you. Genetic analysis of a brain tumour can help predict the way it will respond to certain treatments. The genetic makeup of a tumour, as well as location, size or other treatments you are receiving, will all play a factor in the effectiveness of certain drugs. Every person’s cancer is unique and something that works for you may not work for someone else.  

Developing a trusting relationship with your treatment team is key to feeling empowered in your conversations with them. This team could include your oncologist, surgeon, care coordinator, or other people involved in your medical care.

You have the right to ask for a second, third and fourth opinion, and to have as many conversations as required to ensure you properly understand your treatment.  

Why are there international clinical trials that aren’t available in Australia? 


We are very lucky in Australia in that the clinical trials here are very similar to those overseas. In Australia, all patients have access to standard therapies and we have had great progress in getting compassionate access programs, international clinical trials and well-performing drugs to Australia

 

Our work, however, is never done and Australian advocacy organisations such as Cure Brain Cancer Foundation are working hard every day to ensure Australian patients have access to the best therapies and treatments. Ask your doctor what clinical trials are available which you might be eligible for.  

Why are there international clinical trials that aren’t available in Australia? 


We are very lucky in Australia in that the clinical trials here are very similar to those overseas. In Australia, all patients have access to standard therapies and we have had great progress in getting compassionate access programs, international clinical trials and well-performing drugs to Australia

 

Our work, however, is never done and Australian advocacy organisations such as Cure Brain Cancer Foundation are working hard every day to ensure Australian patients have access to the best therapies and treatments. Ask your doctor what clinical trials are available which you might be eligible for.  

What research is happening regarding genetic links in brain tumours? 


Studies have demonstrated that there may be a 5-10% hereditary link to developing brain tumours. A family history of glioma is generally rare, but when present is associated with a two-fold increased risk of developing glioma.  

If you are concerned about a family history of cancer, you may wish to consult a genetic counsellor. Certain genetic conditions, such as neurofibromatosis, tuberous sclerosis, Von Hippel Lindau disease and Turcot Syndrome, are linked to an increased risk of developing a brain tumour.  

 

For more information on genetic links click here. 

What research is happening regarding genetic links in brain tumours? 


Studies have demonstrated that there may be a 5-10% hereditary link to developing brain tumours. A family history of glioma is generally rare, but when present is associated with a two-fold increased risk of developing glioma.  

If you are concerned about a family history of cancer, you may wish to consult a genetic counsellor. Certain genetic conditions, such as neurofibromatosis, tuberous sclerosis, Von Hippel Lindau disease and Turcot Syndrome, are linked to an increased risk of developing a brain tumour.  

 

For more information on genetic links click here. 

What is Avastin? 


Avastin is called an anti-angiogenic drug, which means that it kills tumour cells by starving them of blood. While Avastin hasn’t been shown to increase overall survival, there is lots of research to indicate that it can, in some cases, increase progression-free survival and improve quality of life by reducing some side effects, such as brain swelling. So rather than experiencing a gradual decline, some patients experience a better quality of life while taking Avastin. 

Avastin is usually prescribed for recurrent Glioblastoma (GBM). However, there are instances of Avastin being prescribed in the earlier stages of diagnosis, as well as for other Gliomas such as Astrocytomas. Historically, Avastin has sometimes been held off until after other treatments- in some cases, the reason for this has been because of the large financial cost associated with the drug. However, as of mid-last year, Avastin has been listed on the Pharmaceutical Benefits Scheme (PBS), making it more affordable for Australians living with brain cancer. 

There have been examples of Avastin being used in the treatment of paediatric brain tumours. The best thing to do is to talk to your doctor about what is appropriate and available to you. 

 

To find out more about Avastin click here

What is Avastin? 


Avastin is called an anti-angiogenic drug, which means that it kills tumour cells by starving them of blood. While Avastin hasn’t been shown to increase overall survival, there is lots of research to indicate that it can, in some cases, increase progression-free survival and improve quality of life by reducing some side effects, such as brain swelling. So rather than experiencing a gradual decline, some patients experience a better quality of life while taking Avastin. 

Avastin is usually prescribed for recurrent Glioblastoma (GBM). However, there are instances of Avastin being prescribed in the earlier stages of diagnosis, as well as for other Gliomas such as Astrocytomas. Historically, Avastin has sometimes been held off until after other treatments- in some cases, the reason for this has been because of the large financial cost associated with the drug. However, as of mid-last year, Avastin has been listed on the Pharmaceutical Benefits Scheme (PBS), making it more affordable for Australians living with brain cancer. 

There have been examples of Avastin being used in the treatment of paediatric brain tumours. The best thing to do is to talk to your doctor about what is appropriate and available to you. 

 

To find out more about Avastin click here

Does Medical Cannabis work for brain cancer? 


The first patient completed medicinal cannabis trial for GBM in 2019. The trial looked into tolerability and quality of life for patients diagnosed with a high-grade glioma or GBM. The trial also looked at a secondary outcome to see if adding the cannabis results in tumour reduction or tumour stability. It’s been known for some time that the medical properties of cannabinoids are good for symptom management. 

The trial was run across 12 weeks and found that different people metabolise cannabis differently.  

Medical properties of cannabinoids in Palliative Care: 

  • Decreases nausea and vomiting

  • Influence on appetite

  • Analgesic, reduced pain, reduced inflammation

  • Muscle relaxant

  • Reduces anxiety, sedating, euphoric

  • Reduction of intraocular pressure (glaucoma)

  • Reduction of saliva/secretions

  • Changes immune system behaviour 

 

 Health risks and dependency: 

  • Most trials have discontinuation rates of >10-20% due to adverse effects

  • Risk of psychosis, depression

  • Risk of dependency is significant

  • Risk of death is low

 

Medicinal cannabis can only be prescribed by a registered medical practitioner who can notify/apply on the patient's behalf for approval to import and supply these products through the Special Access Scheme. A doctor must also apply and obtain approval under the applicable state or territory laws to prescribe a medicinal cannabis product. If both state and TGA requirements are satisfied then the pharmacy or hospital that the doctor has arranged to supply the product can dispense it. Generally, a doctor will only prescribe medicinal cannabis to a brain tumour patient for the purposes of symptom management. 

 

To read more about medical cannabis, click here.  

Does Medical Cannabis work for brain cancer? 


The first patient completed medicinal cannabis trial for GBM in 2019. The trial looked into tolerability and quality of life for patients diagnosed with a high-grade glioma or GBM. The trial also looked at a secondary outcome to see if adding the cannabis results in tumour reduction or tumour stability. It’s been known for some time that the medical properties of cannabinoids are good for symptom management. 

The trial was run across 12 weeks and found that different people metabolise cannabis differently.  

Medical properties of cannabinoids in Palliative Care: 

  • Decreases nausea and vomiting

  • Influence on appetite

  • Analgesic, reduced pain, reduced inflammation

  • Muscle relaxant

  • Reduces anxiety, sedating, euphoric

  • Reduction of intraocular pressure (glaucoma)

  • Reduction of saliva/secretions

  • Changes immune system behaviour 

 

 Health risks and dependency: 

  • Most trials have discontinuation rates of >10-20% due to adverse effects

  • Risk of psychosis, depression

  • Risk of dependency is significant

  • Risk of death is low

 

Medicinal cannabis can only be prescribed by a registered medical practitioner who can notify/apply on the patient's behalf for approval to import and supply these products through the Special Access Scheme. A doctor must also apply and obtain approval under the applicable state or territory laws to prescribe a medicinal cannabis product. If both state and TGA requirements are satisfied then the pharmacy or hospital that the doctor has arranged to supply the product can dispense it. Generally, a doctor will only prescribe medicinal cannabis to a brain tumour patient for the purposes of symptom management. 

 

To read more about medical cannabis, click here.  

I’m having trouble getting my partner to see a doctor. How do I encourage them?  


There is a certain amount of stoicism that some people feel they have to hang on to-and while it is admirable, it can sometimes really restrict the capacity to seek support.   

You might want to have a conversation with them about the types of care available, but generally, people will come to what they need when the time is right for them. Sometimes it is when the pain becomes too great and something has to give. 

 

For more info about caring for someone with brain cancer, click here. 

I’m having trouble getting my partner to see a doctor. How do I encourage them?  


There is a certain amount of stoicism that some people feel they have to hang on to-and while it is admirable, it can sometimes really restrict the capacity to seek support.   

You might want to have a conversation with them about the types of care available, but generally, people will come to what they need when the time is right for them. Sometimes it is when the pain becomes too great and something has to give. 

 

For more info about caring for someone with brain cancer, click here. 

It took a little while to find the right clinician for me. Is that normal? 


Clinical support is not a one-size-fits-all type of thing, and it is very normal to take time to get the right clinician for your particular brain cancer journey. Utilise all the avenues to find the right fit for you, it may be a case of going back to your GP for a new referral. 

Be kind to yourself, allow yourself to feel what you are feeling and speak out if it doesn’t feel right for youKeep trying until you find the right fit for you. 

It took a little while to find the right clinician for me. Is that normal? 


Clinical support is not a one-size-fits-all type of thing, and it is very normal to take time to get the right clinician for your particular brain cancer journey. Utilise all the avenues to find the right fit for you, it may be a case of going back to your GP for a new referral. 

Be kind to yourself, allow yourself to feel what you are feeling and speak out if it doesn’t feel right for youKeep trying until you find the right fit for you. 

Is it better to be realistic or optimistic about my situation? 


No way is wrong. There is peace in the acceptance that can come with being realistic, but if it means you're worrying too much, a place of optimism and hope may also work for you. 

Some people have found it really useful to spend some designated time talking about the possibilities and potentials of the future - and then put that conversation aside and live in a place of optimism. Plan for the worst and then hope for the best. 

Is it better to be realistic or optimistic about my situation? 


No way is wrong. There is peace in the acceptance that can come with being realistic, but if it means you're worrying too much, a place of optimism and hope may also work for you. 

Some people have found it really useful to spend some designated time talking about the possibilities and potentials of the future - and then put that conversation aside and live in a place of optimism. Plan for the worst and then hope for the best. 

Disclaimer: All content on Cure Brain Cancer Foundation website is created and published online for informational purposes only. It is not intended to be a substitute for professional medical advice, diagnosis or treatment. You should seek your own medical advice from your doctor or other qualified health professional.

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