My Own Version Of Self Advocacy

Last updated: January 2022

As I am living with lung cancer, I have better days. Despite suffering from body reactions from my targeted therapy, life still must go on. There is no room to give up. With my health care team on my side, I am able to live well. Following this past Lung Cancer Awareness Month in November, I am reminded of what drove me to be alive this far as an ALK-positive lung cancer patient/survivor.

Read about my gene mutation

Being a cancer patient with ALK gene rearrangement, I have learned that we comprised about 5% of the total lung cancer patients. It is not a hereditary mutation, has no known cause, and cannot be passed on to others. Furthermore, a current study found that the median overall survival had reached close to seven years among ALK-positive patients who received the correct treatment.

Get to know my treatment

My medical and radiology oncologists told me my lung cancer can be controlled with a Tyrosine Kinase Inhibitor, a TKI. The prescription medicine also targets other parts of the body where the lung cancer has spread. In my case my brain mets. Lung cancer patients should get biomarker testing first before deciding which TKI option works best. One thing I have learned is that dose reduction is a must when my health is on the line. As long as my scans and hematology results say so, I am all for dose changes for my benefit.

Monitoring while on treatment

My lung needle biopsy and biomarker tests confirmed I had stage 4 ALK-positive non-small cell lung cancer (NSCLC). In order to check for metastases and toxicities, I am on regular scans and blood tests. There will be anxieties along the way but accepting they are routine checkups and diverting my mind away from them drives fears away.

Self-care is a must

Beyond my treatment, I am constantly reminded to show self-compassion. A struggle to care for my whole being is real. I have to find ways to attend to my physical, emotional, social, and spiritual needs. My routine includes sacred space, time with others, sleep, rest, exercise, healthy eating, journal writing or reading, nature exposure, listening to music, baking, and cooking.

Sticking with patient support groups

I find patient support groups are full of hopeful and welcoming members. There are great patient stories and information on treatment avenues or options within each group. I am happy I can personally and freely share my lung cancer journey within the group. Furthermore, these support groups have come up with wide opportunities for me to raise funds for lung cancer research, advocate drug entitlement, appeal to the government for Covid-vaccine priority, and overcome public stigma.

Lung Cancer Awareness Month will always showcase patients' hope, life, and spirit. There will be enormous highlights on screening, early detection, clinical trials, and research fundraising. As for me, my continued mission is to be an active lung cancer patient advocate, support research fundraising, and maintain true self-care.

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This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

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