Keeping on with Treatment

There are three factors which determine whether you can continue on a Government subsidised liver cancer drug in Australia. The specialist makes the call.

• Imaging:  do the CT scans show any new tumours or the growth in any existing tumours? If not, stable disease. Changes say the cancer is "progressing". A very inappropriate term from a health consumer point of view. 
• AFP blood test:  the alpha fetoprotein test measures tumour activity through the analysis of a blood sample. Read about it here. If it increases above "normal"  it suggests that tumour activity is increasing. The tumours may be too small to be detected in a CT scan. However a low, normal AFP level does not mean there is no tumour activity. False negatives are common, but false positives are not. My AFP level was normal in August 2016 when my hepatocellular carcinoma was first identified and just before the surgery to remove it. After successful surgery it stayed normal for over a year and began rising in early 2019 as a sign of a decline in the effectiveness of immunotherapy. Doctors measure AFP in nanograms per milliliter (ng/mL). The normal level for most healthy adults is between 0 and 8 ng/mL. Very high levels -- 500 to 1,000 ng/mL or more -- are often a sign of certain kinds of cancer, but on their own cannot diagnose it.
• Overall health, physical and mental: how are you tolerating the medication? are the side effects manageable? any other new health problems? 

My AFP has been rising steadily. It is by no means very high. Levels such as 20,000 have been seen in other people with liver cancer, my specialist tells me. I have even heard of someone having an AFP of one million ng/mL! 

My current AFP test is the highest it has ever been now, but it's still only 420.  The CT scans over the past 8 months show no changes in tumour size or number. So my reading is that the drug is beginning not to work, but not enough to stop taking it, since the scans show the cancer is not worsening and my overall health is quite tolerable.  The side effects at times are troubling - pain in all sorts of places, sore and flaking hands and feet. But not troubling enough to consider stopping the drug (Lenvima).

New Threat to Life

I haven't blogged here for almost six months. Not that I have not had many thoughts worth writing about.

The most significant thing to happen has affected everyone across the world:  COVID-19.

After recovering well from pneumonitis of last year I was going pretty well, apart from some lenvatinib side effects, mainly sore hands. The time was ripe to make a quick trip to Melbourne to replace the one cancelled in 2019 due to influenza. We left for Melbourne, over 3,400km to the east of home, on 11 March as the world was becoming aware of the outbreak of a new coronavirus beyond Wuhan China to many other countries. Four days into our stay in Melbourne we watched in shock as WHO announced the virus spread to so many other countries that they had declared a pandemic. We acted carefully in our stay in Melbourne, but still used public transport, cafes and restaurants, meeting up with old friends and relatives. We carried hand sanitiser and did lots of hand washing. In Melbourne CBD we saw many people wearing masks, mainly Asians. By the time of our flight back to Perth, the airport was very quiet, there were few travellers. We hoped we would be well spread out  in the plane. Alas, as the departure time approached, people began to arrive at the gate lounge and the plane was about 90% full. Like us, some passengers carefully sanitised their seat area, tray tables, seat belt, head rest etc. Others reached across the aisle to crack jokes with mates.  

A few days after our return the Australian Government closed Australia's borders and some states and territories, closed their borders to Australian travellers from other jurisdictions. People we being encouraged to stay at home as much as possible, adopt good hand and cough hygiene practices, socially distance at 1.5 m and public gatherings were banned. Only essential workers could go to work; others were encouraged to work from home, children to be home-schooled by parents trying to work from home as well.

People over 70 or over 65 with a chronic condition (tick) or a suppressed immune system (tick) were advised to stay at home and consider having groceries and medication home delivered, but to avoid regular and necessary health care appointments. Doctors' consultations were available by phone when your presence was not necessary in the clinic.

I approached those rare trips out with trepidation as it took a while to adapt to, and feel confident with, the new practices. Some of my cancer drug side effects began to worsen. My hands were sorer, and my feet began to hurt so much that there were days when I could not go on my permissible daily walk in the local neighbourhood. The anti-COVID hand washing took a toll on my sore flaking hands, no matter how much cream I rubbed into them.  I could no longer wear protective fabric gloves as they prevented appropriate hand hygiene.

My back began to ache continuously, waking me from sleep several time a night and making me feel quite miserable and exhausted. Although I tried not to think of the future, when I did, it looked very gloomy. I believed - and still believe - that a vaccine is unlikely as coronaviruses have proven an insurmountable challenge to virologists over past decades searching for a vaccine, to the common cold, for example. This new strain of coronavirus however, was far more deadly. Lots more lives at stake. Until then vulnerable groups, including me, dare not venture outdoors or interact freely, even if the social restrictions were relaxed for other groups. Much as I enjoy being at home, would I ever get out of here?

I felt trapped, not at home but in a metaphorical corner. The drug is kind of working, stable disease, the doctors say, but the AFP marker of tumour activity is continuing to rise. The side effects were bad and made life hard, but not so hard that I could decide to stop the drug. I was stuck.

I spent a week thinking that the precautions I was taking to stay safe, and the side effect management, were all so futile. I was going through all this to stay alive so that, a bit further down the track, I could die of liver cancer. What was the point?

Eventually I saw the light. I am staying home not only for my own protection, but for that of others. And I definitely did not want to die sedated and alone, in a COVID ICU. I wanted to survive until international travel bans were lifted and my son and family could visit Australia from Malaysia.