GG is a 59-year old Malaysian lady. About four years ago (June 2014) she had a bit of cough. She consulted a GP who said there might me something in her lung. GG was asked to consult a lung specialist in Hospital A in Penang.
A CT scan on 5 June 2014 indicated mild fibrosis in both lungs. There was a 1.6 cm nodule in the right lower lobe, likely benign in nature. Minimal atelectasis (collapse or closure of a lung resulting in reduced or absent gas exchange) in the right lung base. Conclusion: Features are suggestive of infective process, such as tuberculosis.
GG was sent home without any medication.
Unfortunately, GG did not get any better in spite of returning to see her doctor again and again.
Her tongue became crooked. GG went for acupuncture. Great! Her headache went away and her tongue became straight again. The acupuncture treatment was for about two months. She received two treatments per week. Each treatment cost RM 8.00.
Unfortunately again, GG’s problems did not go away. In September 2017, she developed severe headaches and could not stand the pain. She started to cough, especially at night. GG went to consult a neurologist in Hospital B. A scan showed nothing in her brain but there was a 2.6 x 2 x 2.5 cm mass in the left upper lobe of the lung. There was also a 2 x 1.6 x 2 cm mass in the right lower lobe.
There was partial collapse of her T3 vertebra. There were lytic and sclerotic lesion seen in the right 6th rib and the left 10th rib.
A core needle biopsy of the lung mass was done. The result confirmed cancer — an invasive moderately differentiated adenocarcinoma.
GG went for a second opinion in Hospital C. A PET scan was done followed by a biopsy again.
The PET scan results suggested primary lung cancer with metastasis to the perihilar node and multiple bony metastasis involving the spine, pelvic bones, bilateral ribs, right skull base, left scapula and left humerus.
A tissue specimen sent to Kuala Lumpur for further analysis indicated positive for EGFR gene mutation.
GG was started on oral drug Tarceva in October 2017. And she had been taking this drug until now. GG had to pay RM5000 plus per month for this medication. In addition she received monthly Zometa injection for her bone. This cost about RM1500 per month.
Chris: Did you ask the oncologist if these treatment can cure you?
GG: No, cannot cure. Can control only.
C: How long do you need to be on the medication?
GG: Take Tarceva until I die.
When GG came to see us, she was already on Tarceva for 13 months.
The oncologist offered an interesting deal. GG has to buy Tarceva for 10 months. After that she will be given free Tarceva for life. In other words, spend $50 to 60K on Tarceva first and then you get whatever Tarceva you need for life.
For the past three months GG received free Tarceva but had to spend about RM300 per visit on hospital expenses.
Unfortunately, about two weeks before she came to CA Care, GG had to be hospitalised for ten days. This cost her RM21,000.
All in all, up to this point in time, GG said she had already spent RM100,000 for her medical treatments. Never mind, insurance pay!
C: Why do you come and see us. Why don’t you continue taking the Tarceva. After all it is for free now!
GG: The oncologist said Tarceva is not effective anymore! I need to change to another more expensive drug. And this time I need to pay for that drug. It will probably cost RM10,000 per month and I cannot afford that.
C:Did you suffer any side effects while on Tarceva?
GG: Initially there was a bit of hair loss. My skin was dry and there was a bit of itchiness. After about seven months on Tarceva and Zometa, I started to have more serious problems.
- Double vision. If I close one eye, it is okay. With two eyes opened it is havoc.
- Cannot stand the bright light with my eyes opened.
- Both ears with ringing sound.
- Legs no strength.
- Severe muscle pull at the neck.
C: Did you have such problems before taking Tarceva?
GG: No such problem.
Indeed when GG came to see us she was really in a bad shape. She could not sit up for long and needed to lie down. Her son pushed her around in a wheel chair.
I asked GG to leave behind her stack of medical reports and CDs of the scan. I need to do some “homework” to understand what had happened.
One month after commencing Tarceva, GG had a CT scan. Did the tumours in her lung disappear? As shown by the scan below, there was no magic.
One year after consuming Tarceva, CT scan showed GG’s condition did not get any better either. Study the images (above and below) and see for yourself that the tumours in the lungs did not go away.
GG had been a RM1,500-Zometa-injection every month. Her bones did not get any better either. MRI in September 2018 showed severe compression fracture of body of T3 vertebra and sclerotic lesions in bodies of T2, T3, T4, T5, T6, T7 and T11 vertebrae.
Every month, GG did blood test and her CEA, CA 153 and CA 19.9 were monitored. The results (as in tables below) were disappointing.
In September 2017 when GG started seeing her doctors in Hospital B, her CEA was only 11.7. Then GG started to take Tarceva prescribed by an oncologist in Hospital C. The CEA increased to 58.6. Over the months, even with Tarceva, the value fluctuated. It August 2018 (after almost a year on Tarceva) it was 42.5. In September 2018, it was 14.8 (Table below).
The rise and fall of CA 15.3 and CA 19.9 showed similar trend. Look at the big picture.
GG started off with CA15.3 = 35.5 and a year later it was 98.
For CA 19.9, it was at 120.4 in September 2017 and it was at 178.9 in September 2018.
You don’t need to be a doctor to know that the treatment did not work. GG needs to try her luck elsewhere. If she continues with the medical treatment, she was told that she needs a new, more expensive drug. This time she has to pay for the drug. Her dream of enjoying free Tarceva for life turns out to be just a “crashed dream” or an illusion.