Many people turn to their own research to find alternative treatment options to complement the standard of care. Some reach out to experienced GBM clinicians, others read the latest medical papers. But making sense of an entirely new language of scientific studies can be difficult – especially if you already under significant stress and pressure.
Learn more about the treatments for GBM here
It’s easy to feel you’re not doing enough in terms of research or finding help, or to question whether you’re doing the wrong thing by recommending a particular treatment. Remember that any solution will be imperfect – there can be side effects with some medications and many of the options out there will be ineffective against tumor regrowth. So there is a balance to strike between investing time looking for treatment options, and spending quality time with your loved one which should be a priority.
Deciding with your loved one at which point of the journey to bring in new treatments can be hard, and there is no guide for this. Some people decide to try new treatments at the point of progression, also called recurrence, when the tumor comes back and the effectiveness of standard treatments declines. Others do so right at the beginning, choosing to employ these alternative treatments alongside the standard of care. There is growing medical evidence that hitting the tumor early in conjunction with the standard chemotherapy and radiation can be beneficial, and it is definitely worth you and your loved one exploring any possibilities with your doctor.
Learn more about the treatments for GBM here
Empowering yourself as you go through GBM is so important. You and your loved ones are advocates for your own journey. It’s in your power to ask questions, seek new approaches, request second opinions. Finding and getting access to high quality healthcare for GBM can be a lottery depending on where you live and whether there is a center of excellence near you that has specialist doctors and treatments on tap. GBM treatments and clinical trials can also be difficult to find, limited in number, only available in certain geographical regions, and are often expensive. Arm yourself with information and options. Once you have that you can begin to work out what is out there that works for you and your family.
There’s no right or wrong answer around end of life care but getting the support you need can really help in order to make the decisions that are best for your family. Conversations around end of life care can be difficult and some people may choose not to have that discussion with their family member at all. However, as GBM can cause cognitive decline, you might want to look into creating a durable power of attorney. This enables loved ones to legally make decisions about a person’s care on their behalf if they can no longer do so.
There are various types of support that you may find you need during your journey. Here are some to think about:
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The most important thing you can do is to support your loved ones emotionally during this time.
That can simply involve making time for them, listening to their concerns, or helping them make decisions about treatment. At later stages of the illness, the level of support needed by your family member will increase. It might be good to consider seeking professional advice or assistance at this stage.
See more about how you can get help here
Taking care of another person can be physically and mentally taxing. It’s also important to protect your own health – for example by being careful not to damage your back when helping your loved one out of bed. There are many good resources out there and it’s important to reach out for support if you need it.
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GBM can impact a range of brain functions depending on the location of the tumour. Growth of the tumour can lead to a number of physical and cognitive problems, such as a loss of balance, memory issues, impaired vision and a reduced ability to speak. If your loved one begins to struggle to process and articulate things well, they might rely on you to interpret information and explain things in simpler terms, or in serious cases help make decisions on their behalf.
It’s a very difficult and sensitive subject, but consider discussing with your loved one their thoughts on this in advance. If they are up for the discussion, you might discuss the types of treatment they are comfortable with, what they’d like you to do for them should they become more ill, and plans for end-of-life care.
One key characteristic of GBM is the heterogeneity of the tumour: it can have very different and changing mutations in its genetic makeup which in turn means there isn’t a one-size-fits-all approach to treatment. The first step is usually to complete the standard of care – which involves surgery followed by radiotherapy and chemotherapy.
In addition, you and your loved one should seek information and advice about what options are available beyond the standard of care, either at the beginning of your journey or at a later stage of tumour recurrence.
Learn more about the treatments available here
Make sure to take time to yourself to relax and do the things you enjoy. This will look different for everyone, but some people recommend exercise, yoga, meditation, spending time with friends, as well as planning trips and activities you and loved one can look forward to.
Speaking to people in similar situations can help you feel less alone. There are support groups that can allow you to find others that can relate to your situation.
Getting help from a trained professional can sometimes be the best course of action. Ask your doctor what support services are available through the hospital system, including social work and home care services. Some brain tumor charities offer advice services and can point you in the direction of finding extra help.
There’s a ticking time bomb in my head. I’m learning to live with it.
Like most people in treatment for brain tumors in the United States, I’ve had to adapt to a mind that feels very different from the one I once knew.
Nicola Nuttall writes movingly about her daughter Laura who lived an incredible vivid life even after being diagnosed with glioblastoma.
Over the last year we’ve entered this unexpected brain cancer world after discovering a glioblastoma (GBM) brain cancer tumour, grade 4, and consequently limited life expectancy.
My Brother Died of Brain Cancer. 20 Years Later, I Had It, Too.
I was told it didn’t run in families. Was it just chance?
We Are Living With Brain Cancer. Here’s How Biden Could Help Us.
Like Beau Biden, we have glioblastoma. It doesn’t get the attention it should.
Margaret writes about her and her husband Glenn’s glioblastoma experience, including becoming activists for better treatment.
There’s a ticking time bomb in my head. I’m learning to live with it.
Like most people in treatment for brain tumors in the United States, I’ve had to adapt to a mind that feels very different from the one I once knew.
Nicola Nuttall writes movingly about her daughter Laura who lived an incredible vivid life even after being diagnosed with glioblastoma.
Over the last year we’ve entered this unexpected brain cancer world after discovering a glioblastoma (GBM) brain cancer tumour, grade 4, and consequently limited life expectancy.
My Brother Died of Brain Cancer. 20 Years Later, I Had It, Too.
I was told it didn’t run in families. Was it just chance?
We Are Living With Brain Cancer. Here’s How Biden Could Help Us.
Like Beau Biden, we have glioblastoma. It doesn’t get the attention it should.
