Can we have a little bit more
information about 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’s 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.
At what point in the treatment plan
is Avastin used?
Avastin is usually prescribed for
recurrent Glioblastoma Multiforme (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.
Why hasn’t my doctor prescribed Avastin for me?
There are many reasons a drug may not be prescribed for you. These days we can test the genetic makeup of a brain tumour and even predict the way it’ll respond to certain treatments. That genetic makeup, as well as location, size, or other treatments you may be receiving etc., will all play a factor in the effectiveness of certain drugs. Every situation is different, and something that works for you may not work for someone else and vice versa. It’s important to have a conversation with your treatment team about your treatment options and what’s available to you.
Is Avastin used for children?
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’s appropriate and available to you.
How can I access the GBM AGILE
GBM AGILE is a revolutionary concept and Cure Brain Cancer Foundation (CBCF) are proud to have invested over $1.1mill into seed funding the project. The unfortunate reality of seed funding is that it’s hard to predict the outcome and while CBCF’s seed funding to other initiatives, such as the personalised medicine program ZERO Childhood Cancer, has already turned into a government backed initiative that’s saving lives, GBM AGILE isn’t yet available in Australia.
Currently, GBM AGILE is available to patients in the US, but with only one drug currently registered to the trial it’s not considered advanced enough at this stage to provide benefit to the brain cancer community in it’s goal to be an adaptive trial. While CBCF are still supportive of the trial concept, they’ve not committed any further funding to GBM AGILE and instead focusing on funding other adaptive clinical trials like BIOMEDE that CBCF believe will deliver faster results to Australians.
Like with any treatment or clinical trial, a conversation with your doctor is the best place to start, as they’ll know the most about your eligibility to participate, and in the meantime CBCF’s world class Scientific Advisory Committee will continue to keep their eye on GBM AGILE, as with every promising treatment and program.
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’s 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.
If you can develop a trusting relationship with your treatment team, that’s really key to feeling empowered in your conversations, especially if the news sometimes isn’t good. This might not even necessarily be your oncologist, it could be your surgeon, care coordinator or another member of your treatment team.
You have every right to be persistent and
ask for a second, third and fourth opinion and to have as many conversations as
you need until you properly understand.
What research is happening
regarding genetic links in brain tumours?
This is definitely an area that is being talked about both nationally and internationally, most notably at the World Brain Tumour Summit in Bethesda USA last year. While Brain Cancer used to be thought to have no genetic link, studies now show that there are genes that are proven to be connected to brain cancer and there is a 5%-10% hereditary link.
In order to fully understand your tumour better, some people may wish to consult with a genetic counsellor and have extensive germline testing done. Studies suggest that there are multiple different types of genes that can be linked to particular brain tumours. Some of these genes also may have predisposition to a particular syndrome. As an example: the TP53 gene found in people diagnosed with GBM, Medulloblastoma or astrocytoma brain tumours in some cases has been linked to patients with Li-Fraumeni Syndrome (LFS). Despite the fact that particular genotypes can be found in brain tumour patients, the overall hereditary rates are extremely low and the costs of having genetic testing done need to be considered before undertaking this path.
What do you know about the medicinal cannabis trial for GBM?
The first patient completed the medicinal cannabis trial for GBM in 2019. The trial is looking into tolerability and quality of life for patients diagnosed with a high grade glioma or GBM. The trial is also looking 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 really good for symptom management.
The trial was run across 12 weeks and has found so far that different people metabolise the cannabis differently. They’re currently in the process of figuring out why. Results are still TBC, but some of the current findings are listed below.
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 behavior
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
How can medicinal cannabis be legally prescribed?
Medicinal cannabis can only be prescribed by a registered medical practitioner. This doctor can notify/apply on the patient's behalf for approval to import and supply these products through the Special Access Scheme. The 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.
Why are there American clinical trials that aren’t available in Australia?
We’re very lucky in Australia in that what we have on offer here is very similar to what’s overseas. All standard treatments are available to patients and we’ve made huge strides in getting compassionate access programs, international clinical trials and well-performing drugs to Australia. But our work is never done, and the Australian advocacy organisations are working hard every day. Accessing clinical trials is so important and the more people that access clinical trials, the closer we get. So keep asking your doctor about what’s out there.
What do you know about the Keto diet?
The ketogenic diet is a very low-carb, high-fat diet and there have been studies to look at the anti-brain cancer effect of the diet. Anything that reduces your sugar intake is good, for general health if nothing else. But like with any diet or alternative therapy, if your doctor says it’s a good thing to do and isn’t going to impact any other treatments you might be taking, then go for it. But always check with your doctor first.
There are some trials in the UK monitoring the Keto diet but nothing that we
know of in Australia at the moment
How did you go about telling your
friends and family?
It’s definitely a really hard thing to do. You may find that your friends and family get upset or experience feelings of denial.
Should we re-do a Power of Attorney
that was done in 2000?
Definitely check it and re-do it now, if necessary. It’s always good to make sure your paperwork is in order. Unfortunately the law changes from time to time and even though generally Power of Attorneys are protected, sometimes lawyers do get it wrong.
Would you recommend us getting a
Will done for our daughter who is turning 18 soon?
Even if someone has no dependents or super, it’s still good to do a Will just so that everything is streamlined. Everybody should have a Will and update it each time your circumstances change.
Accessing my defacto partner’s superannuation after his death was a nightmare. Has the situation improved?
Surprising, especially given it was “binding” but the situation has improved somewhat.
What would you recommend for somebody who has been blocked out of your bank account because of your partner’s medical situation?
Sometimes people have the bulk of the money sitting in one person’s account for tax purposes- consider getting your own credit card that’s not attached to your partner’s or having your own account in your own name with enough to cover several months of expenses and funeral costs etc.
How do we remove that fear that has been generated in Palliative Care?
When your Oncologist, who you’ve put all your trust and faith in starts to talk about Palliative Care, it can be quite frightening. We may never remove that anxiety, but hopefully the presentation has brought some more clarity to what Palliative Care is and diversified how people feel towards it.
Did the presentation bring something new to people about Palliative Care?
A patient or family may try not to think about the fact that they might need palliative care services one day, but participants found that listening to an explanation of the services really opened their eyes to how much help they really do give and removed some of that fear.
The presentation highlighted that Palliative Care isn't just a medical focus, but that it's really about trying to support the whole family. Participants were encouraged to learn that anyone can access those supports through palliative care at any time.
Do you normally wait for the Oncologist to refer you to Palliative Care?
Unfortunately the old rhetoric towards palliative care still exists. Some Oncologists may not refer a patient to Palliative Care services early because they may fear looking like a "failure". In years past, a referral to palliative care has been like a baton passing, but now those Palliative Care services are delivered in tandem with everything else.
Palliative Care services are all about getting out and experiencing the stuff you want to do while you’re well enough to do it and so these services can be accessed at any time. Your GP can refer you, or you can even self-refer.
Do you think that in order to remove the stigma, we should not call it Palliative Care and call it something else instead?
We still need a lot more focus on what palliation actually is. Palliation ends the discomfort from symptoms. It’s important to highlight that we palliate symptoms and not people.
Palliative Care has changed and continues to grow, and those services are focused on person-centred care and family-centred care. No matter what it's referred to as, the reality is that Palliative Care plays a big role in supporting the whole family with services like helping or assisting to improve quality of lifestyle and engaging someone in what they want.
Thank you to Kerri for sharing your story- it was lovely to hear from another parent going through the same thing. A few tears, and a lot of understanding.
It's important that we are not ashamed of the journey of our loved ones. Acknowledge and appreciate that it’s your journey as well. Find love, humour and passion in every day.
Some days you feel like you’re alone and feel like you’re battling your own journey. But you’re not- We are all together.
What has been your personal experience with Palliative Care?
Our experience with Palliative Care is that it's about living. It’s about how we are going to live the rest of our lives.
I’m having trouble getting Dad to access support. How can I encourage him?
There's 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.
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. Keep on your own journey and focus on yourself. Sometimes your own healing will even show those others the way.
It took a little while to find the right support person for me. Is that normal?
Support is not a one-size fits all type thing, so yes, that's very normal. Utilise all the therapies and modalities to find the right fit for you, it may be even be a combination of treatments.
Be kind to yourself, feel what you are feeling and speak out if it doesn’t feel right for you from your professional or support person. Keep trying until you find what works for you.
Is it better to be realistic or optimistic about my situation?
No way is wrong. There is a 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.
In the presentation, you talked about when something is out of your control, to challenge what you can control. Can you expand on that a little bit for those days when we internalize our situation?
When you get the diagnosis, your life is ticking along. Maybe you’re working, or a full time mum or dad, or maybe you're studying. But, then from that moment of diagnosis, everything changes. Every decision is made with the medical situation at the centre. We have no control over these things and this ican be a big shift.
One tool we sometimes use is the CIA acronym.
When you’re confronted with something really challenging:
C – What control do I have? None?
I – Then, can I influence it? No?
A – So, accept. Not necessarily accept the condition, but accept the fact that you have no control or influence on the condition.
As the patient, you have the control to – manage your own medication, or your own appointments, or what information you discuss.
As the carer, you have the control to – maybe make the decision to walk away for half an hour without feeling guilty.
Don’t live to an expectation to what you’ve got. Live for the now.