Patient
Patient Information
We have made an informative downloadable PDF with information, just select the “Information Sheet” button below to view it.
We aim to update this page regularly.
There are independent patient and caregiver support groups on Facebook; however, you will see strong links to both ALK Positive Australia and ALK Positive Inc (USA) , as both aim to assist ALKies. These groups can be a wealth of knowledge and a great way to gain insight or ask questions.
Support
Many support groups are available through various organisations in Australia such as Cancer Council, Lung Foundation Australia, McGrath Foundation and Rare Cancers Australia. Some, like McGrath and Lung Foundation offer the support of qualified nurses. There are more than listed below and we encourage you to reach out to who you feel most comfortable with.
If you just want to chat to a fellow ALKie or have a question that you feel only a fellow ALKie or Caregiver could answer, let us know and we will try to put you in touch with a patient/caregiver volunteer in your State or Territory. Just fill in the webform on the link below.
Informative Links
The top links provide information specifically on ALK Positive Lung Cancer. The lower sites can be more generic on Lung Cancer but are informative. Some sites may require you to create a login or are aimed at Medical Professionals.
ALK Sites Around the World
Whilst the ALK Positive Australia organisation is in its infancy, we are working to improve the amount of information available on this site. In the meantime, several similar organisations around the world have more extensive sites established which you may find useful.
Our Stories
In 2018, when my husband was diagnosed with lung cancer, I remember the thoracic surgeon explaining to us that if we did nothing he wouldn’t be here in 9mths. Receiving that news when my husband was in his early forties and we had twin 9yo boys, was devastating. Finding out his cancer was ALK positive gave us a little bit of hope along with a million more questions. Finding the worldwide ALK+ Facebook page was an incredible source of information that really helped us advocate for ourselves and for his treatment options. There was a wealth of information however a lot wasn’t relevant to us in Australia which made it time consuming to find the parts that could help. This is part of the reason why we developed this charity in conjunction with our fellow ALKie families.
– Alison H
After being diagnosed with ALK Positive Lung Cancer, like many other ALKies I turned to the internet as source of information on this rare type of cancer. All the information I found was from overseas. There was no connection to Australian medical experts, research or patients and caregivers in Australia.
I saw a need for a not-for-profit organisation that would raise public awareness and fund medical research into the treatment of ALK Positive cancer in a way that was reflective of Australian patients, our families and our health system. By establishing ALK Positive Australia we have made it possible for all Australians to support ALK Positive research with donations made within Australia now able to be tax deductible.
– Jon G
I was 44 years old and was just diagnosed with prostate cancer when a pre-surgery CT scan revealed I had another primary cancer, this time in my lung (ALK Positive Non Small Cell Lung Cancer). After surgeries to remove both cancers, then radiation and chemotherapy aimed at my Lung Cancer I was cancer free for a short time before the lung cancer returned in my lymph nodes.
It has been nearly five years since my first diagnosis of cancer and I am cured of Prostate Cancer and am keeping my ALK Positive cancer at bay with the help of Targeted drugs (TKI’s) that I take twice daily.
During this time I have experienced a vast disparity of support and information between my two cancers. Lung Cancer and our rare type ALK+ needs more attention, support and general understanding. That is why we are here, to help those unfortunate enough to be an ALK-ie and their families. No one should feel they are doing this alone.
– Graham H
In April 2022 my seemingly healthy, non-smoking husband was diagnosed with Stage 4 lung cancer with metastasis in the brain. The long month from biopsy to result advice was the hardest month of my life.
Confirmation of the ALK+ mutation gave us hope, and we scoured the internet for medical journals and research papers trying to better understand this diagnosis. Frustratingly there was very little information available, and anything that could be found was US based & often not applicable to Australian patients & our health system.
It was a time of overwhelming fear & profound loneliness.
This should not be the experience of the newly ALK+ diagnosed in Australia, and this patient & carer driven charity aims to change that.
