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-Why is Herceptin such a wonder drug?

Herceptin has proved to be a major advance as it helps to cure a certain type of aggressive breast cancer described as HER2 positive. This cancer is made of cells which contain HER2, a molecule involved in the rapid multiplication of cancer cells.

- In layman’s terms, what is the Persephone trial and how did it come about?

The PERSEPHONE trial is about finding the right dose of Herceptin for the patient. At the moment, Herceptin is given for a whole year based on evidence from an international trial comparing 12 months to nothing. A more recent trial has suggested that Herceptin might be just as effective if given for 6 months rather than 12.

- Why is the Persephone trial important?

PERSEPHONE is an important academic trial because it addresses the question of how long you need to take Herceptin for.

- Is it really a big issue if Herceptin is over-prescribed?

Yes, because Herceptin can cause damage to the heart. Some chemotherapy treatments can also do this. Patients who receive both treatments are therefore at a greater risk of experiencing some damage to their heart. Also, it means that patients may be experiencing the side-effects of treatment for longer than necessary instead of returning to normal life quicker without the inconvenience of prolonged treatment.

- When will the trial report?

The trial should report 2 years after it has recruited its 4000th patient. Obviously this depends on the speed of recruitment but we are currently on target to have reliable results reported in 2016.

- If it turns out that 12 months of Herceptin is better than 6 months of Herceptin, what will happen to everyone who only had 6 months of treatment?

This is very unlikely based on the results of previous trials. Duration trials throughout Europe have safety committees and trial steering committees who regularly monitor safety and efficacy.

There is only a very small risk that 12 months of Herceptin is better than 6 months. However, if it was the case, patients who received only 6 months will be follow-up more closely than the others.

If it is reported that 6 months is safer than 12 months then the patients randomised to the 12 month arm will be closely monitored in terms of cardiac toxicity.

- Where is the Persephone trial taking place?

PERSEPHONE is offered in 117 hospitals throughout the UK. Another 20 hospitals will be open soon.

- What’s involved with taking part in the trial, apart from the 6 or 12 months of Herceptin?

We’d also like you to complete a quality of life questionnaire at various stages of treatment. This will help to give us a clearer picture of the impact of Herceptin treatment on everyday life. Also, the research team will ask you if they can send a sample of your blood and some of your tissue taken at surgery to the Cambridge Research Institute where analysis will be conducted to get a better understanding of HER2 positive breast cancer and how Herceptin works.

- Can anyone join, or ask to join?

To join, you have to be HER2 positive and have received less than 6 months of Herceptin treatment.

- Are other, similar trials being conducted?

Similar trials are conducted all over Europe and in New Zealand. In total more than 13,000 patients are going to participate in Herceptin duration trials comparing 12 months with a lesser duration.

- Where can those affected by breast cancer find out about this and other trials?

If you are interested, please ask your oncologist or contact the clinical trials team at your hospital.

Also, a list of trials that operate in the UK is accessible here. and here.

The Persephone trial website provides more information and it’s here.

What I forget, of course, is that the patient perspective is a pretty straightforward one. I have a disease: you will tell me what you think will cure me: I will go along with it, unless the cure becomes unbearable, or turns out not be working, in which case we try something else. Thinking about survival makes everything black and white.

But for those at the other end of cancer treatment, it’s more complex. I found out a lot more about this in a rather sublime setting on Monday – eating macaroons (the vanilla was best) in La Duree in Harrods department store in London. I was meeting with Emma and Anne-Laure, who are involved in the Persephone drug trial, which is looking at the efficacy of 6 months versus twelve months of Herceptin treatment.

I was approached by Emma shortly after I wrote about stopping Herceptin. She asked me if I would contribute to a leaflet; I asked if she would answer some questions. We’ve been in touch ever since, and we met to talk about how I can support the Persphone trial.

During the course of our meeting, I got an insight into just what clinicians and scientists trying to further cancer treatment are up against. We talked about recruitment, about ethics, about data protection. We discussed making literature both patient-friendly and scientifically accurate. I found a bit about the hoops that researchers have to leap through to get a trial (a)designed (b)approved (c)underway (d)completed. Let me tell you, many of those hoops are on fire. Which is right and good, of course. Without this kind of rigour, results are meaningless, and it’s good to see respect for patients so high on the agenda.

Not that Emma and Anne-Laure were complaining. They were just explaining. And as they did, I thought about how it’s a miracle, really, that any trial anywhere happens. The Persephone trial is looking for 4000 women in the UK with a HER2+ve breast cancer diagnosis who are also being treated with chemotherapy. Sadly, the statistics show that shouldn’t be difficult. But those 4000 women need to be told about the trial, have the trial explained to them, and be in a hospital that is part of the trial, where research nurses are able to reassure and answer questions. They need to read information and sign consent forms. They need to be sure about the purpose of the research and happy to take the (very small) risks involved. They must understand the concepts of anonymisation and randomisation. They must trust the NHS and the oncologist who is recommending the trial to them.

I always appreciated the treatments and drugs available to me – even the really nasty ones that had me begging for mercy, and peace, and sleep – because I’d a million times rather have the chance of treatment than hear the words, “I’m sorry, but there’s nothing else I can do”. But after Monday, I appreciate them all the more: I gained an insight into how we get these treatments, and the people, like Emma and Anne-Laure, who work so hard to make trials happen.

The upshot of our meeting was that I am going to advise on, and contribute to, consent forms, leaflets, newsletters, etc, which I’m really happy to do. (Don’t worry, I won’t be advising on any science.) Also, I may now be addicted to vanilla macaroons.

(I feel I ought to say that Emma and Anne-Laure do not mostly swan about taking tea with bloggers in exclusive cafes. They were in London for a meeting just round the corner.)

I’ll be publishing my interview with the Persephone team next week. In the meantime, there is more information here.

Yarn. Lovely yarn. It comes in all sorts of blends – merino, cashmere, silk, angora, alpaca. (Lurex, nylon, acrylic, but we won’t talk about those.) It comes in many colours – rich reds, angelic blues, peachy yellows, solid colours, semi-solids, and riotous blends of colours you think would never work together but, somehow, do. And those colours have some curious names. Yes, there are some traditional (‘bluebell’, ‘cherry’, and the like), but many are from the nail varnish school of naming: at the moment my pale gold nails are, according to the bottle, swathed in shade ‘Buy me a Cameo’.

Take these three randomly selected beauties from my stash.

From left to right, that’s some silk laceweight from Fyberspates, colour ‘Majic’. The sock yarn from Knitsch in the centre is ‘Chelsea’. And the Knitting Goddess offering on the right is ‘Rococo’.

On the needles at the moment – my biggest project to date, a laceweight Icarus Shawl (on the cover of this book) – is some ‘Charlot’ from Yarn D’Amour. It looks like this.

(I’m up to 330+ stitches per row. And I still love it. Mostly. I’m having to make myself work to a ‘4 rows per day’ target though, so I don’t get seduced by projects offering instant gratification. If you want to see how it works out, drop back around June 2014 by which time I might be done.)

So, that’s the background. On to the coincidence part.

I belong to a sock club and every couple of months I receive a skein of yarn and a pattern to knit with it. The yarn and pattern are exclusive to the club so each time there’s an informal knitalong happening, as we all knit the socks and discuss the pattern online, and post photos of our progress on Ravelry. (If you don’t knit you may find it difficult to understand how much fun belonging to a sock club is. Trust me, it rocks.)

The day after we went to the hospital to talk about whether to continue herceptin or not, and found out about the Persephone trial, and decided to call it a day with the treatment, the Sock Club parcel was posted out. The yarn is a squishy, springy, pink and green concoction from Brooklyn Handspun. (Nora took the photo and I’m grateful to her for letting me use it.)

And the colourway?

Persephone.

Now, I don’t want to believe in a universe that cleverly organises for a drug trial to be called Persephone, and a yarn colourway to be called Persephone, purely so that the yarn can remind me that I’ve made the right decision. If the universe was that organised, surely it would just, y’know, make it so that the cancer didn’t happen to begin with. (Or maybe the universe has a tendency to micro-manage.)

But when I saw what the colourway was, I had a little moment where I believed that the universe had, in fact, flicked a little bit of reassurance my way. It was a drive-by grin, a wink as my world held a door open. It made me smile. I’m still smiling.

These are going to be the best socks ever.