Beyond the median

It’s been five years since I was diagnosed with mantle cell lymphoma (MCL). I’ve always wanted to know what to expect from treatment. In 2014 the general consensus among haematologists was that the disease was treatable, if incurable. Depending on which research you read, the median survival time from diagnosis was somewhere between 3 and 7 years. Of course, median survival times tell you little about your own prospects. You always hope that you will be on the side of the survival curve that’s beyond the median.

The good news for MCL patients is that the median survival time is continuing to rise as new treatments are developed. I’ve recently read two interesting pieces of research. The first is a retrospective study of patients treated between 2000 and 2014¹. The survival graphs that are directly relevant to me are reproduced below.

OS and PFS in MCL patients younger than 65

For patients younger than 65 years old who had a stem cell transplant following chemotherapy, these charts show that the median overall survival time was around 13 years from first treatment, with the first 7 years likely to be disease-free. Subsequent treatments become much less effective however – hence the rather gloomy sounding subtitle to the study.

The second study concerns an innovative trial for MCL using CAR T therapy. This type of treatment was covered by the recent War in the blood documentary. CAR T therapy involves genetically re-engineering blood cells (T cells) so that they selectively target cancer cells and kill them. A paper² will be presented at the American Society of Hematology’s annual conference in December reporting on the progress of the Zuma-2 trial. The conference abstract states that of 28 patients who received the treatment, progression free survival after a year was 71%.

It’s significant as many of these patients suffered multiple relapses and had hard to treat variants of the disease. CAR T is not yet a cure and there were some pretty severe side effects (‘mostly reversible’), but it does seem like progress. More patients have now been treated on the trial, so it will be fascinating to see the updated results in a year or two’s time.

¹ Kumar, A., Sha, F., Toure, A. et al. Patterns of survival in patients with recurrent mantle cell lymphoma in the modern era: progressive shortening in response duration and survival after each relapse. Blood Cancer J. 9, 50 (2019)

² Wang, M.L. et al. 754 KTE-X19, an Anti-CD19 Chimeric Antigen Receptor (CAR) T Cell Therapy, in Patients With Relapsed/Refractory Mantle Cell Lymphoma (MCL): Results of the Phase 2 ZUMA-2 Study. (2019)

How am I?

How am I?

There’s a simple answer – worried, anxious and fatigued. But that’s far too simple an answer, as I’m also hopeful, grateful and optimistic. I feel as if I’m swinging between these two extremes very easily at the moment. Having cancer, and caring for someone with cancer at the same time, is confusing. Nothing I’ve experienced before has prepared me for this.

All of our family and friends have been hugely supportive during the last few months. Thank you to everyone for all that you’ve done for us so far. Jane’s been home a week and the house is filled with flowers. Surgery was successful and her response to chemotherapy has been amazing. The best her surgeon has seen for someone in her condition, so he said.

I'm rapidly becoming an expert at flower arranging
I’m rapidly becoming an expert at flower arranging

The day before Jane went in for surgery I had a one year checkup following my stem cell transplant. That news is really positive too – my consultant thinks there’s a 60% chance that I’ll still be in remission in six or seven years. The pessimist in me whispers that there’s a 40% chance I won’t be, but I’m going to ignore that voice for the moment.

All of these things make me hopeful, grateful and optimistic.

The worries, anxiety and fatigue feel just as real though. All things being equal, I’m a few years away from retirement. I enjoy work. Software AG is a great company, my colleagues are good to be around and I love working with our customers and potential customers. But given how unpredictable our prognoses may be, perhaps it’s selfish to carry on. Maybe I should retire early and focus on making other memories instead. Perhaps there’s a middle way and I can do both. I hope so, but what if I do the wrong thing, make the wrong decision? I don’t want (for example) finance to become a problem if we both continue to defy the odds. And I want us to continue to defy the odds and believe that we will! The Bastard Beast™ isn’t going to push us around.

So I have no answer as to the future at the moment and that’s what I’m finding exhausting, both physically and psychologically. I’m not going to rush into making changes. Jane is an equal partner in my decision making and she needs much more time to recover. I thought that having a stem cell transplant was pretty tough, but it is nothing in comparison to being treated for ovarian cancer.

War in the blood

Every so often the BBC produces something that is worth the year’s licence fee alone. War in the blood, first broadcast last Sunday, is one such programme. It’s a truly remarkable 100 minutes of television.

I’d originally decided not to watch it. Somehow, it all felt a bit too close to home. The CAR T-cell therapy covered by the programme shares some similarities with the stem cell transplant I went through last year. Blood cell harvesting, long hospital stays and (ouch) bone marrow biopsies. The emotions you go through as treatment is explained to you and your carer. The periods of relative wellness, followed by total reliance on medical staff. It’s all horribly familiar. But encouraged by friends on one of the MCL forums I belong to, I decided that I needed to see it for myself.

Blood centrifuge
The blood centrifuge I was hooked up to a year ago. You see these being used in the documentary harvesting the blood cells needed for CAR T-cell therapy.

The personal stories of Graham Threader and Mahmoud Kayiizi are at the centre of the documentary. Both had acute lymphoblastic leukaemia (ALL) which had stopped responding to conventional chemotherapy. The phase 1 CAR T-cell trials they signed up to were their best chance – their last chance – of a long lasting remission. Phase 1 trials are inevitably risky undertakings, as they’re the first time new treatments are tried in people. But as Graham observed, “someone has to go first”.

The science behind CAR T is explained in a straightforward manner using ping-pong balls by Dr Martin Pule. He’s in charge of programming the blood cells used so that they attack the cancer and kill it. His early passion for tinkering with electronics eventually led him into this career. There’s a point in the programme where he talks about the data from the trials being all important. In the midst of the patients’ personal stories this made me gasp, but of course, he’s right. You have to remain objective to make the right design decisions for the patients. You think with the head, not the heart.

Dr Claire Roddie leads the teams administering the trials. The documentary gives a fascinating insight into what motivated her to become a haematologist, and she shares in the patients’ joys and sadnesses. You see the wider NHS at its best as well.

War in the blood is available on the BBC iPlayer for another month. It’s compelling viewing, with a bittersweet conclusion. I’m glad that I watched it. The future of all blood cancer treatment may well be CAR T-cell shaped soon. I’m grateful to the pioneers – the patients and medical professionals – for their selfless commitment.

In praise of Vueling

A few days before Jane was diagnosed with ovarian cancer, we’d booked a holiday in Barcelona. It’s somewhere neither of us has been. It was meant to be a sign that things were getting back to normal after my stem cell transplant last year …

Treatment obviously means that this trip has been postponed. Fortunately, we’d only booked the flights and hotel. The hotel was easy enough to cancel as we’d opted for a flexible booking (at the Catalonia Magdalenes, if you’re interested). The flights – non-refundable – looked as if they were going to be more tricky. We both have holiday insurance, but through different companies.

The flights were booked with Vueling, so I called their customer service desk to ask for a cancellation invoice. The call was answered promptly and I was offered the invoice, rescheduled flights or a full refund. The customer service advisor I spoke to was empathetic and helpful and I gratefully accepted the refund. All Vueling required was an emailed “fit note” and proof of our kinship. My credit card was refunded within 48 hours of these being provided.

Good customer service does exist, even on low-cost carriers, and Vueling now has two more customers for life.

Barcelona travel guides

I also needed to cancel arrangements for a weekend touring in Wales with the Seven at the same time. One of the hotels (a small, privately-run affair near the base of the Cader Idris) I’d booked was non-refundable. I emailed them to explain and hoped that the notice I’d given would enable them to sell the room to someone else. It’s tough being a small business owner and I thought this might be rather more useful to them than simply being a no-show. I said I understood that my booking didn’t allow refunds and that I didn’t expect one. Sadly, I never received even an acknowledgement of my cancellation from the hotel.

Say Bollocks to Cancer and Bollocks to Brexit

Join me, my family and friends and say Bollocks to Cancer.

Also please use your vote tomorrow to say Bollocks to Brexit.

Vote Liberal Democrat to say Bollocks to Brexit

The two requests are connected. The development of novel cancer therapies relies on close European and international co-operation. The vacuum left by a mad no-deal Brexit that Farage, half the Tory cabinet and their elitist chums want will kill the sick.

So vote for a genuinely pro-remain party. I recommend supporting the Liberal Democrats as they have the best chance of frustrating the Brexiters, but whatever. Just vote. Defeat the unpatriotic nationalist elites. And tell your family, friends and neighbours to do the same.

This is no time for our great country to become the twenty-first century equivalent of the GDR, isolated and poorer in an increasingly dangerous world.

Cancer: “Enough Of This, Thank You”

While I remain in remission from MCL, my lovely wife Jane now has her own battles to face. I’m still too numb to process her news properly. It’s a good job that others in the family are stronger than me. So Emily will be running the Cancer Research UK Race for Life – again – later this year. You can read why here.

Race for Life

Any pennies that you can send her way will be gratefully accepted and well-used in funding further vital research.

“Enough Of This, Thank You”.

Transplant +198: Maintenance Rituximab on not Brexit day

So today, at the fourth time of asking, success! And no, I don’t mean Theresa May getting her dreadful EU withdrawal bill through parliament, which lost for a third time, by 58.

On not Brexit day, my neutrophils were above the 1.5 mark (at 1.66) needed for the hospital to give me my first maintenance rituximab. It was a remarkably straightforward process – a subcutaneous injection, taking 10 minutes to administer. The nurse asked me to keep talking to her through the process. I happily spouted nonsense about Brexit unicorns, Gnu, electric cars and the A380 (the aeroplane, not the road).

Brexit unicorns. Every bit as likely as an electric Caterham 7. But less real.
Brexit unicorns. Every bit as likely as an electric Caterham 7. But less real.

Other than feeling a little bit woozy (probably from the chlorphenamine pre-med – a pill normally used to reduce hay fever symptoms) I’m fine. I’ve been told to watch out for fatigue over the next few days. There’s also a risk that my neutrophil count could drop very low again, so any signs of a problem and I’ll be straight over to the hospital.

I think this will probably be the last blog entry I’ll be making about the stem cell transplant and its aftermath. Naturally, I shall celebrate my re-birthday every 12th September and there will be cake. No unicorns, by request. But I feel that today symbolically marks the end of this phase of my life. I’m not sorry to leave the SCT behind me, but there may be plenty of challenges ahead.

Transplant +189: The International Day of Happiness

I’m fairly sure that every day is an international day of something or other. I suspect that there are so many, there are diary clashes as well. Anyway, today is the international day of happiness, and coincidently, I’m happy.

Today was hospital day. After the scare of a few weeks ago, my neutrophil count has now climbed back up to 1.9. That’s just a smidge below the lower bound for normal people. I’m also just in the normal range for haemoglobin and platelets. This should mean that it will be fourth time lucky when I return for my maintenance Rituximab next Friday. So to celebrate it was coffee and cake at the Bottle Kiln, followed by a short run in Gnu to Carsington Water and Middleton Top.

Me, in Gnu, with Gnu's gnu, at Middleton Top Winding House
Me, in Gnu, with Gnu’s gnu, at Middleton Top Winding House.

I’m writing this at 4.30pm. Not even the worst UK Prime Minister of my lifetime ever could spoil my happiness for the rest of the day.

Surely?

Oh.

Transplant +161: Bloody neutrophils

Bloody neutrophils. Bloody absence of neutrophils, actually.

I’ve been feeling really good for the last week or so. Gnu has emerged from hibernation and I’ve racked up a hundred or so very pleasant miles in him across Derbyshire. I’ve survived a third PT session in the gym which involved a punchbag. Very cathartic. I managed a six-mile walk around the tramway trail at Calke Abbey on Saturday without ill effects and, good Liberal Democrat that I am, I’ve been out delivering Focus leaflets. So the call I got yesterday morning from the hospital was unexpected.

Calke Abbey
Calke Abbey – a view from the old driveway.

The conversation went something like this.

“Hello Mr. Holyoake. Are you feeling well?”

“Yes, very. Thank you for asking.”

“I’m calling about your blood tests. Your neutrophil count is low, so you’re very vulnerable to infection at the moment. Are you sure you’re feeling well? If you are feeling even in the least bit unwell you need to come to the hospital immediately so we can get antibiotics into you.”

“I’m feeling fine. I feel better than I have done since the transplant. (Pauses, while making sweary noises in my head.) How low are they?”

“Well, they’re at … 0.14. We need to give you a course of GCSF injections immediately …”

Anything below 0.5 is considered severely neutropenic. No salad, blue cheese or pâté for me for the next few days! I’d hoped that I’d left such concerns behind after finishing with chemo last year, but it appears that my optimism was misplaced. The hospital (and other SCT survivors) have told me that it’s not unknown for this to happen. I know from past experience that the injections will sort the problem out, in the short-term at least. I’m slightly less panicked today than yesterday about what will hopefully be a minor setback.

However, there’s another wrinkle in this story. GCSF (Filgrastim) injections are (as far as I’m aware) the only way to get a haematology patient’s neutrophil count back up quickly, to protect us from life-threatening infections. (With a neutrophil count of 0.14, pretty much anything could be a life-threatening infection.)

Because of this, Filgrastim is on the WHO’s list of essential medicines. It should always be in stock.

The hospital pharmacy were only able to dispense three of the five injections I need. The other two will have to be collected separately on Friday afternoon. If the medicine supply chain is already struggling, it doesn’t fill me with confidence that it will work at all in the event of a catastrophic no-deal Brexit.

Are you listening, Pauline Latham MP, and all of your fellow travellers in the ERG? (I know the answer to that question – it’s no.)