Update from irritating news flash - 23.8.18
To recap - the irritating news flash covered the rise in a liver enzyme* - alanine transaminase or ALT - which put a spanner in the smoothly turning chemotherapy wheel. Normal levels are around 4-56 International Units; on 7.8.18 mine was 370; on 9.8.18 it was 430. Really bad is >1000.
Amid general uncertainty, (my) bewilderment, lack of helpful suggestions for the culprit, the way forward was to wait for the ALT to go down and/or carry out a liver ultrasound. Waiting for it to go down involved more morning visits to UCH for blood taking - Monday 13 August generated a result on Tuesday 15 August of 291 - in the right direction, if a long way from normal. On the phone, the registrar said that this was OK for chemo to go ahead on Friday (17 August - one week's delay) but without the bevacizumab (Avastin). This suggested that their best bet was that the bevacizumab was the cause, trigger, partner in crime when put together with chemo, whatever - but they certainly weren't saying this and the literature doesn't seem to implicate it in raising LFTs. There was little support for the cause being verruca bazooka or the essential oils in wound care oil, but it made no difference, it was all a matter of waiting for the ALT to come down anyway.
Along with the resumption of the basic chemo (carboplatin and paclitaxel) in this sixth and final cycle, the expectation was that three weeks later, I would be tried again with bevacizumab but this time, on its own. If LFTs (and everything else) remained normal, I would have it every three weeks for a year.
As of 23 August, I'm still due to have, but haven't yet heard about the liver ultrasound. Also, the bloods from 9 August were supposed to include virology, on the grounds that I could have some form of hepatitis. These didn't come back and so far remain mysterious.
Whenever there's a glitch like this, a pattern that's becoming familiar (and shouldn't surprise) reasserts - anxiety reappears, sleep goes off, questions arise - is there cancer in my liver? are the cytotoxins poisoning me more than my body can cope with? has the lowered immune system led to me contracting Hep A, B or C - there are enough options. But lurking behind this particular glitch is the fact that you only have one liver... and it's not an optional extra.
*I'm not sure about my understanding of how the numbers on these LFTs work. One of my internal explanations is that your liver cells, the individual representatives of your liver chemical factory, are full of enzymes (proteins that allow biochemical reactions to take place at body temperature and pressure). If your liver cells are damaged, they burst or leak through their outer membranes, leading to some of these enzymes ending up in your blood at a level above normal. A standard LFT profile will look at some common liver enzymes as a guide, but there are many, many more. The UCH doctors seemed to prefer the idea of a drug or substance causing the rise in my LFTs, because it was ALT in particular that went up. (But you'd think the other enzymes would go up too, unless the cells only became leaky to ALT?)
Related to this, my second internal explanation is that my liver, on receipt of the supposed chemical insult, responded by making more of the ALT than other enzymes, because it needed more ALT to metabolise the chemical insult. But if the cells are damaged, then you'd still expect the others to go up too as they come pouring out...?
I did try looking it up of course. I like this one best but it doesn't help with the above questions.
Amid general uncertainty, (my) bewilderment, lack of helpful suggestions for the culprit, the way forward was to wait for the ALT to go down and/or carry out a liver ultrasound. Waiting for it to go down involved more morning visits to UCH for blood taking - Monday 13 August generated a result on Tuesday 15 August of 291 - in the right direction, if a long way from normal. On the phone, the registrar said that this was OK for chemo to go ahead on Friday (17 August - one week's delay) but without the bevacizumab (Avastin). This suggested that their best bet was that the bevacizumab was the cause, trigger, partner in crime when put together with chemo, whatever - but they certainly weren't saying this and the literature doesn't seem to implicate it in raising LFTs. There was little support for the cause being verruca bazooka or the essential oils in wound care oil, but it made no difference, it was all a matter of waiting for the ALT to come down anyway.
Along with the resumption of the basic chemo (carboplatin and paclitaxel) in this sixth and final cycle, the expectation was that three weeks later, I would be tried again with bevacizumab but this time, on its own. If LFTs (and everything else) remained normal, I would have it every three weeks for a year.
As of 23 August, I'm still due to have, but haven't yet heard about the liver ultrasound. Also, the bloods from 9 August were supposed to include virology, on the grounds that I could have some form of hepatitis. These didn't come back and so far remain mysterious.
Whenever there's a glitch like this, a pattern that's becoming familiar (and shouldn't surprise) reasserts - anxiety reappears, sleep goes off, questions arise - is there cancer in my liver? are the cytotoxins poisoning me more than my body can cope with? has the lowered immune system led to me contracting Hep A, B or C - there are enough options. But lurking behind this particular glitch is the fact that you only have one liver... and it's not an optional extra.
*I'm not sure about my understanding of how the numbers on these LFTs work. One of my internal explanations is that your liver cells, the individual representatives of your liver chemical factory, are full of enzymes (proteins that allow biochemical reactions to take place at body temperature and pressure). If your liver cells are damaged, they burst or leak through their outer membranes, leading to some of these enzymes ending up in your blood at a level above normal. A standard LFT profile will look at some common liver enzymes as a guide, but there are many, many more. The UCH doctors seemed to prefer the idea of a drug or substance causing the rise in my LFTs, because it was ALT in particular that went up. (But you'd think the other enzymes would go up too, unless the cells only became leaky to ALT?)
Related to this, my second internal explanation is that my liver, on receipt of the supposed chemical insult, responded by making more of the ALT than other enzymes, because it needed more ALT to metabolise the chemical insult. But if the cells are damaged, then you'd still expect the others to go up too as they come pouring out...?
I did try looking it up of course. I like this one best but it doesn't help with the above questions.

Perfect example of Jan applying her prodigious scientific brain to her very personal predicament.
ReplyDeleteLove your writing style Jan.