Transplant +1,097: Third Birthday

Yesterday was the third anniversary of my stem cell transplant. This year’s card was more of a story book than a card …

Super Timmy birthday card

With the Covid-19 pandemic still raging and my response to the vaccine being uncertain (I’ve had recent positive and negative antibody tests), I’m being extremely cautious about the outside world. This means I’m still working from home and probably getting out no more than a couple of times a week – the vast majority of events being outdoors.

The pandemic and all this time at home has had a positive side. I’ve been able to finally repair a Commodore VIC 20 that I bought some years ago for £2.19. Bargain! I have, however, spent rather more on socketing and replacing the faulty chips.

Chips removed, tested and sockets added. And in the case of UD1 – the CD4066BE – replaced.

All this work obviously needed an investment in a new soldering and desoldering station. And a Penultimate+ cartridge and disk drive emulator from ‘the future was 8 bit‘. (The disk drive emulator works on my Commodore 64 which may also have been recently acquired … I am nothing if not frugal with my hobbies).

Cleaned, reassembled and fully working – my VIC 20 about to run some 1980s games

But I’m still rubbish at gaming.

304 is not the highest of high scores I’m sure. Wondering if I’m Dirty Tim or Teflon Timmy to be honest.

The Sharps have also been getting some love and attention. You can find my ramblings about a ‘Moonlander’ game that I wrote over on my other blog.

And where would I be without Gnu? (Richer, probably, but with even more time and money to spend on ‘smelly old computers’). Later this week I’m joining the Taffia’s Fish and Chip Run from Chepstow to Aberdyfi. Although it takes place on Saturday, I’ve taken Friday and Monday off work so that I can beat off the increasing effects of fatigue I’m feeling these days. I’ll be revisiting the hotel near Chepstow that Jane and I had our wedding reception at 30-something years ago for Friday evening. Saturday will be a one-way trip – a 280 mile epic is well outside of my (safe) driving abilities in a single day now. I’m looking forward to heading up to Gnu’s spiritual home – Portmerion – from near Aberdyfi on Sunday. A leisurely drive back to Derby on Monday will complete the travelogue.

Another gratuitous picture of Gnu, taken while waiting for his MOT earlier on this year. Passed with flying colours, naturally.

Be seeing you …

Transplant +984: Grumbles

After a stop/start year for treatment I had my first maintenance dose of Rituximab since September on Friday morning. Strictly speaking I was below the neutrophil count required (1.3 vs the normal threshold of 1.5 for treatment) but it was determined that the benefit outweighed the risk. To counteract the mild neutropenia and rather more severe lymphocytopenia I have at the moment I’ve been prescribed a course of GCSF injections over the next couple of months, alongside the daily antibiotics and antivirals. Lovely.

So my immune system is really not playing ball at the moment. This is a worry in normal times, but rather more stressful at the moment as the world tries to vaccinate its way out of the Covid-19 pandemic. Although I’ve had both doses of the AstraZeneca vaccine there’s a strong chance it won’t be very effective in me. That’s not surprising given that research into other vaccines in blood cancer patients show similar poor responses. I imagine that I will be taking more precautions than most for the foreseeable future.

It’s all a bit rubbish really but I’m not going to grumble. Well, not too much anyway. Where there’s life there’s hope, after all. The cyber bunny in the stream in Ashburton that I saw on our holiday a few days ago agrees with me.

Transplant +733: 2nd Rebirthday

Saturday marked the second anniversary of my stem cell transplant. With everything that’s happend since last year, it was a much more muted event. I did get a fantastic card from Jane.

As the weather was good (not too hot, but sunny), I took the 7 for a trip over to Sutton on Sea for fish and chips. Some things I learned:

The B roads between Newark and Sutton on Sea are much more fun to drive on than any of Lincolnshire’s A roads. Safer too, given the standard of driving demonstrated at roundabouts on the Boston ring road. A hint to Boston’s SUV drivers – you give way to traffic coming from your right, even if (especially if) it’s a strange little yellow car that you’ve just seen from your perch in the sky.

Mablethorpe has changed beyond recognition from the 1970s; Sutton on Sea hasn’t. Unless you really want to experience Blackpool packed into 500 yards – but without the benefit of the illuminations and trams – avoid Mablethorpe and head to Sutton on Sea instead.

Waldo’s fish and chip takeaway on the High Street serves a decent portion of cod and chips – and they’re incredibly well organised in dealing with the demands of COVID-19.

The 7’s fuel tank seems to have a range of around 230 miles. Fortunately I remembered to stop at a petrol station after 229 miles of spirited driving.

On balance I would probably had a nicer day – but with much more crowded roads and less good tarmac – if I’d stayed in my usual haunts around the Peak District. But I did get to see the North Sea for the first time in ages.

On the cancer front, it’s all much the same as it has been for the last year. I remain in remission and I’m hoping to restart maintenance treatment – after a COVID-19 pause – in a couple of weeks. I continually overestimate my ability to be active. After this little adventure Sunday was spent dozing in front of the Tuscan GP. Today has been work – and my brain stopped functioning by 2pm. Tomorrow should be much better …

Transplant +563: “Underlying medical condition”

The world has changed dramatically since I last wrote here. The phrases “social distancing”, “self-isolation” and “shielding” are now common currency.

My view of the 2012 Paralympics opening ceremony. Long before social distancing.

I’ve been working from home since March 11th as the company I work for closed its offices across the world. In normal circumstances I hate working from home.

On the 12th I suspended my ‘walk all over cancer’ challenge as I became increasingly concerned about the impact of exposure to Covid-19.

The last time I left home was on the 16th. I went to have a vaccination as part of my recovery from my stem cell transplant. The scenes outside the doctor’s surgery at 0800 that morning were disturbing. Everyone without an appointment was firmly and politely turned away at the door.

My ‘extremely vulnerable’ text from the NHS Coronavirus service arrived on the 23rd, followed by a letter from my GP on the 24th. I’m taking their warnings and advice seriously.

I have one wish. That the blasé phrase used to describe the majority of deaths from Covid-19 – “the patient had an underlying medical condition” – is binned from future media reports. It lulls the well into a false sense of security and devalues the lives of those who are less fortunate. Any and all deaths from this virus are a tragedy, and the words used to report them matter.

 

Transplant +530: Walking all over cancer

The last time I completed the Cancer Research UK walk 10,000 steps a day challenge was after I was diagnosed, but before I had chemotherapy and a stem cell transplant for mantle cell lymphoma. My life-saving treatment was successful because of research carried out into this and other cancers, in part funded by this charity.

After my wife’s diagnosis of ovarian cancer last Easter and treatment, Jane is now benefiting from a newly available drug, Olaparib. Again, this drug and the hope that it brings wouldn’t have happened without research.

But research costs money.

So I’m doing this challenge again, in part to improve my fitness, in part to say f*** you cancer, but mostly to raise some more funds for this vital research.

If you can spare a couple of pounds, that would be fantastic. If not, please just cheer me on as I wander around trying my best not to bump into too many people, animals and inanimate objects.

Click here to sponsor me, or the weird bloke in the picture might eat Jane’s head 🙂

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.

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.

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.

Transplant +365: First rebirthday

One year ago …

… and today.

First rebirthday and continuing to kick the arse of The Bastard Beast™.

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.

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.

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.

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.