Skip to main content
Submitted by Shiba Suresh on 22 November 2020

Shiba Suresh, who was diagnosed with Stage IV ALK mutation lung cancer, was immediately started with targeted therapy. Here she states she has responded well to her medications and considers herself lucky that she can live longer.

We have beautiful weather in December in Kochi. It is the perfect time for gardening. I excitedly bought some flowering plants of adenium, petunia, dianthus and roses for my home and got busy for a couple of days planting and pruning them. I must have strained myself because I developed severe back and shoulder pain. I had to apply pain relief balm.

हिंदी में पढ़ें: एएलके (ALK) लंग कैंसर के मरीज साथ मिलकर अपनी स्थिति में सुधार के लिए काम कर रहे हैं

As I was rubbing on the balm on my neck, I felt a swelling in the neck on the right side in between the neck and collar bone. Something like small beads. But when I checked in the mirror, I could not see anything.

Bead like lumps on neck

The next day after office I visited a nearby hospital. The physician checked me and said there were two or three small nodules on my neck. She asked me if there was a history of TB in the family. Or if I had had a cold, cough, fever or cut in the finger in the recent past where possibility of infection may have occurred. Infection from bacteria and viruses can result in swollen lymph nodes. I told her I had been perfectly alright and there were no such episodes. She took my X-ray and prescribed a five day course of antibiotics. But even after medicines there was no change in the nodules.

Then I visited a surgeon who recommended a needle biopsy. After three days when the results came out, it clearly written on the report ‘carcinoma’. I was quite devastated, but held my nerves together.

Lung cancer diagnosed

The oncosurgeon said the next step is to check where the primary source of cancer was. A full body PET scan showed that the primary tumour was in the left lung upper lobe. It had metastasized to neck lymph nodes, sternum (breastbone), third lumbar spine vertebra (L3) and few nodes in the diaphragm. It had also spread to the tail of pancreas. I was admitted to the Amrita Institute of medical Sciences, Kochi. A surgery was done to remove the nodes from the neck. They were sent to Bangalore for genomic testing and profiling to determine the type of lung cancer and therapeutic procedures. I had tested ALK positive. ALK is a short name for the anaplastic lymphoma receptor tyrosine kinase gene. There are abnormal mutations in the genes which are cancerous. I was advised targeted therapy for my lung cancer. There was no chemotherapy.

It was on December 2018, I was diagnosed with Stage IV ALK positive lung cancer. I was 51 year old.

What took me by surprise was that I was in the best of health. I used to practice yoga for an hour daily. I was conscious about my food and didn’t indulge in cakes and pastries. I was a non-smoker, so was my husband. So there was no question of second hand smoke. You hear of people getting lung cancer if they are chain smokers. I don’t even get common cold or flu easily. Even when my husband and son fall ill, I am the one who is saved from the infection. I did not have any symptom. I did not have any breathing problem. Never did I have any cough. Actually my life has been quite disciplined and in control. For 30 years, I had been working as a senior engineer for Doordarshan and All India Radio. Wonder what went wrong?

Targeted therapy started

From January 1, 2019, I started my treatment of targeted therapy. I took my first dose on New Year. I had to take two Crizalk capsules every day, one capsule in the morning and one in the evening. Crizalk is especially prescribed for the ALK mutation.

Side effects of medication

In the beginning, I had a lot of side effects. I was nauseous. I had blurred vision and my eyes would hurt with intense lights. Then I developed rashes or allergic reactions all over my body with unbearable itching. My taste had changed drastically. Everything tasted bitter, specially cooked food. I was alright with raw food and salads. But these side effects disappeared after two months.

My routine involves a consultation every three months, and CET and brain MRI every six months, because patients with ALK-positive seem to be at higher risk for developing brain metastases. Once the scan is clear, you feel relaxed for some time. Again the when the date for the next check-up approaches, the anxiety level goes up.

Costly medicines

We have to continue with targeted therapy until the growth and spread of tumour has stopped. The patient may develop resistant to the targeted therapy drugs after some time, then the medicines need to be changed.

The main problem is that the medicines are so costly. I have to spend about rupees one lakh per for 60 tablets of Crizalk capsules per month.

Responding well

I have responded well to targeted therapy. This was indicated in my last PET scan. There were no active malignant cells in my body. And the size of the tumour has also shrunk. There was significant reduction in the tumour size. There was no evidence of disease in the body. It’s our luck that people with lung cancer can live longer.

The only thing is that I have edema in both my legs, up to my knee. Sometimes my hand also gets swollen. Now and then I can see the swelling on my face.

ALK support group

Soon after my diagnosis, I joined the ALK global support group. Here patients share their experience, treatment and management of the disease, which is extremely informative and helpful. Our global group actively raises funds for ALK specific research. We already have three research projects under study and we are all eagerly waiting for their outcome. Since there is a stigma (smokers get lung cancer) attached to lung cancer, funding for research is less compared to other types of cancers. So the ALK group is forced to raise its own funds, conduct research, pursue advocacy to extend lives of individuals of the ALK community.

My advice to other people going through a similar experience is –

  1. Be strong mentally.
  2. Exercise daily.

Listen to the video interview with Shiba Suresh here

 

Community
Condition