Skip to main content
Submitted by PatientsEngage on 12 February 2020

Amit Mohile, whose mother passed away in December 2018 due to rare ALK positive lung cancer, shares with us her diagnosis, disease and the difficult times.

Could you tell us a little about your mother’s condition? What were her early symptoms?

My mother, Jyoti Mohile, was 51 years old when she was diagnosed with lung cancer. There were no early symptoms as the cancer was rare. She was healthy lady who practised yoga regularly and ran a small office. Suddenly, a month prior to diagnosis, she developed a persistent cough. We checked with doctors who tried multiple antibiotics, but her cough continued. When nothing seemed to work we shifted her to big hospital. An x-ray and CT scan detected some fluid in her lungs. On further testing, it was found that she had ALK positive lung cancer.

PE Editor: ALK positive lung cancer falls under the broader categories of non-small cell lung cancer (NSCLC), and refers to an abnormal rearrangement of the anaplastic lymphoma kinase (ALK) gene in our DNA

At what stage was her cancer determined?

She was diagnosed with Stage 3 ALK positive.

Where exactly in the lung was the malignancy found? Had the cancer spread (or metastasized) beyond the lungs?

Her lung was found with fluid and a liquid biopsy diagnosed it as ALK positive. ALK positive is rare type of lung cancer among non- and never-smokers.

What treatment was recommended to her?

Targeted therapy as chemotherapy (chemo) do not work for ALK patients as per the doctor.

What were the risks and side effects of her treatments?

Targeted drugs did not have any major side effects. She did have loose motions and digestion issue which were manageable.

Did you’ll try any alternative treatment options for her?

No

How did the diagnosis affect her lifestyle?

She was under depression for some time and worries about the future. She stopped doing exercises, though she continued her yoga.

What were the symptoms like during the final weeks of her life?

As the cancer started spreading aggressively, she was becoming very weak day by day.

Did you’ll seek any counsellor or support group?

Yes

Who were the caregivers in the family?

Myself, my sister and my father and other family members.

Is there any advice you have for somebody going through a similar situation? How does one find strength during these difficult times?

Try finding new drugs and search for the availability of targeted drugs. I spoke with doctors from the USA and many pharmaceutical companies worldwide who helped to send drugs to India on trial basis which was not yet approved in India. This extra efforts helped me to give extra option to my oncologist and it increased overall survival life of my mother from earlier given 8 months to 4 year plus. For any cancer patient every single day is important!

Encourage the patient to do yoga or exdercise, and always keep them motivated. Ask them to go out with family to avoid depression and keep counselling session every month.

Community
Condition