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It’s time to write the Lonsurf Diary.

To quickly recap, I was signed up for 3 cycles. Cycle 1 started January 11th 2017; cycle 2 on February 11th, and cycle 3 on March 11th. Each cycle lasts 28 days so the final day would have been around April 8th.

Since my bowel and liver surgery in August 2009, I’ve had three previous experiences of Chemotherapy. First was an adjuvant treatment with intravenous Oxaliplatin and oral Capecitabine lasting from Oct 2009 to Mar 2010. Then, there was FOLFIRI plus Cetuximab (both i/v) from Feb to Jun 2014. A drug trial combo of AZD6738 with Carboplatin (again, both i/v) followed one year later, from Feb to Jun 2015.

Each regimen brought different side effects. With Oxaliplatin, it was neuropathy and neutropaenia (low white blood cells). Cetuximab brought an acne-like rash all over my face and torso. Carboplatin and/or the experimental drug also lowered my white blood cells and platelets.

But none of these were really serious, as measured by my ability to do normal things like working, walking, and eating. No constant nausea. No hair loss. No mouth ulcers. No loss of appetite.

For the 2014 and 2015 sessions it was the same pattern. The first CT scan, done around three months in, would show a positive “progression-free” result. The next scan would show the cancer was progressive again and chemo would stop. Scans done after that have continued to show progression as the tumours get larger.

My most recent scan from early April showed the tumor growth had stabilized. When I initially asked for Lonsurf, I calculated a 2% chance of being a “super-achiever”, and around a 20% chance of getting any sort of positive result. As far as I know, I am one of six patients who have recently received Lonsurf at my hospital. I’m the only one with a progression-free result. That supports the statistic and makes me the “lucky one”.

Unfortunately, it also came with lots of tiredness / fatigue, reduced appetite, and nausea / vomiting. Although I managed to stay the course for each of the three cycles, my white blood count was dropping sharply. I ended up in hospital with (yet another) infection, and stayed there for 4 days at the beginning of April. After massive amounts of i/v antibiotics I felt good again. When they discharged me, I told them I had not felt this normal since around October of last year.

So, what to do next? This is the familiar ground of chemotherapy, in which increased progression-free survival is not such a benefit since it comes with toxic side-effects. I made the decision that I would ask for a break from the drug. To use the title of the David Jones first world war poem, I would become In Parenthesis. There will be another CT scan in late June, with results in early July, and we shall see then.

In the meantime, I’ve resumed my cryotherapy sessions back in Thoracic Park. One thing absent from the CT scan results was any mention of tracheal and bronchial lesions. They have done a great job cutting these out or reducing them. This will continue “for as long as I want them to do it”. I do.

It’s a tricky decision on the Lonsurf. After reading the obituary of Robert M. Pirsig, who died recently, I was reminded what he wrote back in 1974:

“The test of the machine is the satisfaction it gives you. There isn’t any other test. If the machine produces tranquility it’s right. If it disturbs you it’s wrong until either the machine or your mind is changed.” (Zen and the Art of Motorcycle Maintenance)

My body is my machine. It didn’t feel right. I need to take pause.

Last week I opened up the massive 832-page book that is Eleanor Catton’s “The Luminaries”. I recall when she won the Booker Prize for it, an interviewer asked a question along the lines “why would anyone used to 300 pages read something that long?”and she replied to the effect “give it 300 pages and, if you like it, read on”. The perfect appeal to pragmatic reason.

The first thing that grabbed me was the quote on the book cover dust jacket:

“There was this large world of rolling time and shifting spaces, and that small, stilled world of horror and unease; they fit inside each other, a sphere within a sphere.”

Last week they opened up the massive 100Kg body I drag around this world using their CT scans to discover the latest on My Little Cancer. The results were not good news.

It was no surprise. I’ve been coughing like a 50-a-day man and I’m sure blood isn’t one of those things you’d normally hawk up from the depths of your lungs.

One of the residual ‘sites of interest’ left over from my adventures in Thoracic Park has decided to grow. Up from whatever to around 3.5cm, which my ruler tells me is the circumference of a small grape. This was a spot they tried to biopsy when I was under the knife, but they only got a sliver and that was non-malignant. The fact they couldn’t get to it before is significant. It’s on the left hilar node. That’s like the pipe that sticks into the wet sponge that is the lung.

There’s a spot on the right lung too, near the site of previous surgery, but we’ll leave that one for fuller character development in the next edition of the saga, if there is a next edition.

Maybe the next bit is more information than you’d like, but on the form a consultant shares with a cancer patient there are a couple of boxes to tick. They explain what the treatment hopes to achieve. One is “Curative”. Another is “Palliative, prolong life”. He ticked the second one. No blurred lines there. That’s a boundary crossed.

Basically, they can’t get at the little grape. If they try, they may as well remove the entire left lung. A step too far, at this stage at least.

So, the answer is chemotherapy for beginners. Actually. that should be read as “chemotherapy, for beginners”. There are no wide-eyed, young medical students trying their hand with a toxic cocktail on my little grape, you’ll be pleased to learn.

When the composers of early English folk ballads and madrigals ran out of words they’d fill in with a quick chorus of “Fol-de-rol”. The great innovation of Celtic folk songs was to add “and a diddeley-eye-dey”.

From the simple, charming world of FOL-DE-ROL I now take you to that of FOLFOX and FOLFIRI. Most chemo regimens involve FOL- folinic acid, F- fluorouracil but there are two ways to end the acronym: OX for Oxaliplatin and IRI for Iriontecan. Last time, I was on FOLFOX. It involved a day of intravenous infusion followed by two weeks of tablets.This time it will be FOLFIRI. The method of treatment is also 1 day of intravenous infusion but then is followed by two days of a slow infusion using a pump and a PICC line into a vein that I will have strapped onto me.

Iriontecan is a semi-synthetic drug. The natural part is derived from the bark of a tree called Camptotheca acuminata, which is a dogwood (Cornus) that is native to southern China and Tibet. The name, translated from the Chinese, means “happy tree”, but it is also known as the cancer tree, or tree of life.

I wish I could say why FOLFIRI is preferred over FOLFOX for me this time, but the medical articles only say that “with all published data taken into account, an outright choice cannot be made for either iriontecan or oxaliplatin in first-line combination schedules for the treatment of advanced colorectal cancer.” And: “Definitive studies comparing FOLFOX and FOLFIRI in patients with advanced colorectal cancer have simply not been done.

One difference could be the side effects. Both lower your immune system, but hair loss (alopecia) and severe diarrhea are far more likely with Irinotecan. I pressed them on this because they always read out a long list of possible side effects, and previously I had none of those (but did have one of the barely-mentioned ones). I was satisfied that this time he’s pretty sure those effects will occur.There is some anecdotal evidence that neuropathy is less common with FOLFIRI, which I suppose is a positive trade-off.

There is something else they may (be able to) try in parallel. Some cancer patients have a K-RAS gene mutation; it’s a 60/40 probability that most don’t. If you don’t have the mutation, a drug called Cetuximab can be useful. It targets the receptors, isolates them, and inhibits their growth. If you have the wrong type of receptors, it has no effect. There is a reasonable chance my receptors will be the ‘right type’. If they are, they will apply to The Cancer Fund for a course of treatment.

Why apply? Cetuximab is one of those hugely expensive drugs you read about in newspapers e.g. Does the NHS need to ration cancer treatments?  I wrote about this before, in regard to an alternative but similarly-priced drug called Avastin. We are talking around £22,000 for a course of treatment. It’s also given intravenously. I got the pipes, might as well use them.

The FOLFIRI, with or without Cetuximab, will carry on for 3 months with treatments every two weeks i.e. 6 treatments in total.

It’s going to be an interesting three months. Outside, the huff-puff, frenetic world of work. Inside,  the small, stilled world of disease. The sphere within a sphere.

And then, the Spring will come.