Okay, so it’s been about three months since my last post. I’d been hoping that, by getting back into a regular posting schedule over February and March, I’d be able to continue this through any treatment side-effects. My Lonsurf Chemotherapy, when learning of this, said: “hold my beer!”
Lonsurf Chemotherapy is a bit of a brute, when it comes to brain fog, or chemo-brain as I prefer to call it. As such, while I’m on the Lonsurf, extended periods of concentration are very much out of my reach.
For the most part…
Because Lonsurf chemotherapy has a very peculiar treatment schedule, which does leave a monthly window of opportunity.
Let me explain.
The chemotherapy treatment cycle does not actually start with Lonsurf. Instead it begins with an infusion of Bevacizumab (Avastin). This is a dose of Monoclonal Antibodies, delivered intravenously in the hospital. Basically, it’s a bag of poison that goes in through the back of the hand.
Providing, that is, all your veins haven’t been wiped out by Oxaliplatin…!
Then you’re given the Lonsurf chemotherapy. In tablet form. To take home and enjoy at your leisure.
Or, more accurately: to take twice a day for the next five days.
Then there’s a couple of days off. Then another five days of tablets twice a day, followed by another couple of days of rest.
This brings you to two weeks since you last had an infusion of Bevacizumab, which is celebrated by giving you another bag of Bevacizumab…
And no one would blame you for thinking that this second round of Bevacizumab would be followed by the same schedule of Lonsurf tablets. But that’s not what happens.
Instead you get two whole weeks off, for your body to recover, before it starts all over again.
And towards the end of this two-week recovery period, the fog begins to lift. Which isn’t to say that I feel at my best but, as it turns out, I’m able to make a post. How good it’ll be, only time will tell…
Before I move on, some quick notes about how Lonsurf chemotherapy works and the typical side effects.
Lonsurf is actually the brand name of a combination of two drugs: Trifluridine and Tipiracil.
All told, then, there are three drugs to consider:
Trifluridine
Started life as an eyedrop!
Anyway, when used in Lonsurf chemotherapy, it gets into the DNA of cells and stops them from growing and dividing. Very useful given the prodigious rates at which cancer cells do both of these things.
Tipiracil
This part exists to prolong the availability of the trifluridine. Basically, as soon as your body notices the trifluridine floating around, it’ll try and get rid of it. The Tipiracil stops this happening as quickly.
Bevacizumab
Slows down the growth of blood vessels within tumours. This growth is known as angiogenesis, which tumours rely on for their insatiable appetite to grow. Stopping this is, then, very useful. The process of which is known as, antiangiogenesis. You don’t really need to know that, I just think it’s a cool word…
And one that you should definitely try saying three times, fast…
Moving on.
The main side effect of all this, ‘stopping cells grow and reproduce’ action, is that it, well; stops your cells from growing and reproducing as well. Specifically white blood cells in the marrow of your bones. But it also impacts the production of red blood cells (corpuscles). And, naturally, the cells that form the lining of your stomach.
Neatly bringing me on to:
Side Effects
- Neutropenia (low white blood cell count)
- Anaemia (low red blood corpuscle count)
- Immunocompromised (because there aren’t enough white blood cells)
- Tiredness (because there aren’t enough red blood corpuscles)
- Nausea (my old friend – because of the stripping of the lining of the stomach)
In my meeting with the oncologist, prior to the start of treatment, I was told that I shouldn’t experience nausea with Lonsurf Chemotherapy…
Lonsurf, naturally, just reached for another beer.
The Bevacizumab infusion, I was also told, was particularly inoffensive…
How come everyone’s getting a beer except me?!
To be fair, it started off okay. I had my first treatment on Thursday 3rd April and left the hospital feeling almost chipper. The tablets over the following five days started wearing me down but the second five-day set of tablets didn’t seem to make me much worse. The second Bevacizumab was administered over 60 minutes, instead of the original dose, which had taken 90 minutes. This did leave me feeling a bit queasy, which I hoped was a timing issue.
Even so, the first cycle was complete. I made the most of my brighter period, despite feeling shattered, and then had the necessary blood test the Tuesday before the next treatment was due to start, that Thursday.
I received my follow-up phone call on the Wednesday and was told, “your blood count’s too low, we’ll leave it an extra week.”
On reflection, that was a scary call. If my body couldn’t tolerate Lonsurf chemotherapy, I would be in trouble. Lonsurf, after all, is the last mainline chemotherapy treatment available to me. It’s not going to extend my life much, if I could only tolerate one dose.
As such, I was quite relieved when the following week’s blood test was fine and the second round could begin. My other blood test, before the third course, was also fine. Yay! Hopefully it was a one-off.
So, for the (week late) second cycle, I asked for the Bevacizumab to be given over 90 minutes (they’d been planning on doing it over 30, as per standard operating procedures), and I wasn’t too bad, come the end. The Lonsurf tablet element of the chemotherapy was a little tougher than the previous time, and the second set of tablets definitely ramped up the side effects.
It was during this period that I leaned a snazzy new term: Acid Rebound.
A harmless sounding phrase… jolly, even…
Sadly not.
What I discovered was, if you take too much Gaviscon, to ward off your nausea, your body eventually rebels. In essence, your body decides that the stomach isn’t acidic enough and boosts the acid output accordingly. The net result of which is some intensely painful vomiting.
To be fair to Gaviscon, it wasn’t their fault. Any product which relies on Calcium Carbonate as the neutralising agent would have caused the same issue…
Essentially, too much chalk is bad for you.
It led to a rough couple of days, as I’d been leaning heavily on the old Gaviscon. Fortunately, I still had some Lansoprazole, which did the same job but in a different way. Lansoprazole is a Protein-Pump Inhibitor (PPI)…
Isn’t that just so much clearer!?
PPIs, it seems, prevent the production of stomach acid in the first place.
And the body is fine with that, but not with taking the edge off!?
Whatever!
It doesn’t have to make sense, as long as it works. And it does.
Right, so where were we?
Ah, yes: coming in for the second bag of Bevacizumab, in the second cycle of treatment. So, the fourth bag of Bevacizumab overall…
Which was a little concerning. You see, I’d had a box of Aprepitant left over from the last type of chemotherapy I’d been on. Aprepitant is a premium anti-nausea medication, at £40 ($55/€47) for a box of three tablets. Well, I’d used one of those tablets before each of the previous three infusions of Bevacizumab.
But now I’d run out.
Naturally, I’d asked whether I could have some more Aprepitant, during one of the earlier visits. I was told that Aprepitant was only used for treatments that caused nausea. And as Lonsurf chemotherapy was right at the low end of nausea inducement, it couldn’t be offered.
After all, no one gets sick from Bevacizumab…
Yeah, let’s see how that plays out!
Anyway, I didn’t throw up during this fourth infusion, but it was damn close.
Which brings us to June 5th and the start of the third cycle. Again, I asked for the Bevacizumab to go in over 90 minutes. This time, however, about 60 minutes in, the inevitable happened and I filled a disposable sick bowl. Thankfully, for whatever reason, I was in a side-room and on my own.
I enquired again about getting some Aprepitant but it simply isn’t available with Lonsurf chemotherapy…
I did, however, manage to persuade the nurse to let me have some more Lansoprazole. But even that was a struggle and had to be externally authorised by a doctor. You know, because you don’t need anti-sickness medications when you’re on Lonsurf and Bevacizumab. Because it doesn’t make you sick, you see.
Jumping forward to two weeks later and I’m back at the hospital for my sixth bag of Bevacizumab. This time there is no side-room. Nope, on this occasion I’m placed at the edge of one room, with full view into the neighbouring one. At least eight other patients can see me…
At this stage, I was clinging to the hope that the only reason I threw up last time, was because I’d had the latest COVID jab the day before. But, given that this timing was on the advice of my oncologist, I feared it was a forlorn hope.
And so it proved to be.
I had to use two of the disposable bowls, this time.
I have to confess, I feel like a right useless bastard when I’m throwing up in the chemotherapy treatment rooms. All the other patients have got enough going on without me stinking the place up. And no matter how quiet I try to be, it’s clearly loud enough to be disturbing to others.
Which brings me on to this coming Thursday, when I start the fourth cycle. Do I try going in with an empty stomach (these are afternoon appointments)? Or will that make things worse?
Because I can tell you from bitter experience, repeatedly vomiting when there’s only bile to bring up, is harrowing.
Failing that, do I only eat things that are easy to regurgitate? A food-stuff that might not even taste too bad on the way back up. Something like custard, perhaps…?!
Seriously, I’m open to suggestions, here. If you’ve got any good ideas, please let me know.
On the whole, though, I’m trying to remain optimistic. I had my scan on Tuesday 17th June and I’ll get to hear the results of that in a week or two. I should also get the results of the scan I had before I started the Lonsurf Chemotherapy, because I haven’t heard that yet either.
With a bit of luck my tumours will be smaller than they’ve been for a while.
While we’re here though, we might as well touch base on how the whole 500 days of life is going…
As we know, I had (my estimation of) 456 days left on Friday 7th March. Which means that on Tuesday 1st July, I have 340 days left.
Wow! I’ve dipped under the year barrier now.
It still doesn’t seem real.
Maybe it isn’t: let’s see what the scans have to say.