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).