I’ve been waiting for the results of my latest bone marrow biopsy to confirm that I’m still in remission. The hospital rang me on Monday asking me to go in on Tuesday. I knew this would mean bad news.

Testing confirms that I’m in molecular relapse. What this means is that although I only have a small amount of leukaemia cells, the percentage has increased from the last test, meaning there is no doubt that it is returning. I’m in trouble.

The stem cell transplant didn’t work. The CAR-T therapy didn’t work. They also put me on a drug called Ponatanib. It looks like this is no longer fully working. The way the consultant doctor explained it, he suspects that the Ponatanib is now acting like a handbrake on a Honda Jazz - it may be slowing it down, but be in no doubt, the car crash is coming.

Next Steps

I’m running out of options. We are now in new territory where they have followed standard protocol but now need to design a specific plan just for me.

The doctor has put in an application for a new next-generation drug that is undergoing clinical trials. It’s not licensed for use in the UK. He is hoping that he can get special approval for me to get it free of charge from the commercial company as part of the clinical trials.

If that doesn’t work, the next option is Donor Lymphocytes. When I had the stem cell transplant, they kept back extra donor blood for this scenario. This would involve them taking the lymphocytes (a type of white blood cell) and giving me an intravenous injection.

These lymphocytes include T cells, which are powerful parts of the immune system. The goal is for these donor T cells to recognise my leukaemia cells as enemies and attack them. This is called the graft-versus-leukemia (GVL) effect.

Here’s the tricky part. When I had the stem cell transplant I was, and still am, given medication to prevent graft versus host disease (GVHD).

Now, the doctor hopes the donor lymphocytes causes mild to moderate GVHD because it’s a sign that GVL is working.

The trick is to hit the sweet spot - to cause enough GVHD, but not too much that GVHD kills me instead of Leukaemia.

I’ll do another post later where I’ll attempt to explain the science, for anyone that’s interested.

How Long Have I Got?

It is extremely difficult to get the doctor to give any specific timelines because there are too many variables.

Based on my own research, the following may or may not be accurate.

I’m currently at 0.5%, or at least I was a month ago when tested. This is molecular relapse. This is the percentage of cancerous Leukaemia cells in my bone marrow. It’s not considered full relapse until it gets to about 10%.

Worst case scenario - Ponatanib has completely stopped working. I can progress to full-blown relapse in as little as 2-4 weeks. From there, without treatment, my type of Leukaemia (ph+ ALL-B) is very aggressive, death can occur within 1-3 months.

The fact that 4 weeks after my bone marrow biopsy it’s not yet showing up in the blood results gives hope that Ponatanib is slowing it down rather than failed completely. The doctor has immediately increased my dosage in the hope to buy us more time. The actual timeline will then depend on the effectiveness of the proposed treatments.

What Can I Expect?

If the new drug is approved, common side effects include:

  • Gastrointestinal issues: nausea, diarrhoea, and abdominal pain
  • Fatigue
  • Headache
  • Skin reactions: rash, itching, or dry skin
  • Increased blood pressure
  • Musculoskeletal pain
  • Haematological abnormalities: reductions in certain blood cell counts (like platelets or white blood cells), which may increase the risk of infections or bleeding

While less common, more serious side effects like liver enzyme elevations or cardiovascular issues can occur.

Luckily, other than a few gastro issues, I’ve managed to tolerate Ponatanib pretty well, which had the same possible side-effects.

If I do need a donor lymphocytes infusion (DLI), common side effects include:

  • Fever and chills
  • Fatigue and weakness
  • Infections
  • Cytokine Release Syndrome (CRS) — much less common than in CAR-T therapy, but possible if a strong immune response happens
  • Autoimmune reactions — where donor cells start attacking specific organs or systems (rare, but documented)
  • Acute GVHD:
    • Skin rash (redness, itching, peeling)
    • Gastrointestinal symptoms:
      • Diarrhoea
      • Abdominal cramps
      • Nausea and vomiting
    • Liver problems:
      • Elevated liver enzymes
      • Jaundice (yellowing of the skin and eyes)
  • Chronic GVHD (I’m still at risk of this from last year’s stem cell transplant):
    • Skin changes:
      • Thickening, tightening (like scleroderma)
      • Rash or pigment changes
    • Dry eyes and mouth (like Sjögren’s syndrome)
    • Hair loss
    • Joint stiffness or muscle weakness
    • Lung problems:
      • Shortness of breath
      • Bronchiolitis obliterans (a serious lung condition)
    • Gastrointestinal symptoms:
      • Persistent nausea, vomiting
      • Malabsorption or weight loss
    • Liver dysfunction:
      • Chronic hepatitis
    • Genital issues
  • Less Common GVHD side effects:
    • Esophageal narrowing or difficulty swallowing
    • Nail changes or loss
    • Increased risk of infections (due to immunosuppression)
    • Fatigue and malaise
    • Peripheral neuropathy
    • Dry, irritated lungs or airways
    • Cataracts (especially after high-dose steroids)
    • Mood changes or depression
  • Bone marrow suppression
    • Low white cells (infections)
    • Low platelets (bruising/bleeding)
    • Low red cells (fatigue, breathlessness).

I’ve already had a lot of this from previous treatment. One silver lining is that I do not need intensive conditioning chemo to wipe out my immune system like I did before the stem cell transplant and CAR-T therapy. I’m not sure I could take any more intensive chemo.

State of Mind

If you haven’t been through anything like this you may wonder how I’m taking it. The truth is, I had a moment, but otherwise I’ve quickly moved to acceptance. It’s entirely out of my hands. This is now the second time I’ve relapsed. I know I’m not winning the battle, but there’s no point moping about it. I have to think about practicalities, like preparing for the worst.

When I was first diagnosed, but after the initial treatment, we made sure I had a will in place.

Strangely enough, a few months before I was diagnosed, I created an ‘If I Die’ document. At the beginning of 2023 I had this realisation that I’ve been fairly lucky in my life. No major tragedies. I had lost grandparents, but they were at a grand old age. I had never considered bereavement planning for myself. Yet, I had this weird feeling that something was coming. I’m not religious or spiritual. I really can’t explain it.

The ‘If I Die’ document is a guide for Rach and Lauren to know exactly what to do so they don’t have to panic about the practical steps. It includes things like getting access to finances, life insurance, etc. It includes things they will need, like account details and where to find passwords (we use a 1Password family vault for most things). It also includes a short section on funeral arrangements. In my case, I don’t care - I’ll be dead - it’s not about me, it’s about them. The only instruction was to not spend much money.

Since that initial diagnosis, a lot has changed and I need to ensure the document is updated as a priority. A change of country and nearly 2 years without income has a big impact on finances!

In terms of pension, I have my Australian superannuation where I’ve already named the beneficiary. I have a small private corporate pension for the few years I worked in the UK. I have a Navy pension for my time in the Navy, and there’s the UK state pension. When we first panicked about finances, I looked about getting access to some of this. There was no chance. You either have to reach preservation age or be confirmed as dying. I do now have the necessary paperwork to be able to get access, at least in the UK, but now I don’t want to. We have adjusted our circumstances and finally, with help from the state, we can get by on very little. I would rather the full lump-sum go to Rach and Lauren.

I also still need to sort out power of attorney. Another priority.

As well as the practicalities, I’m having to accept that it’s no longer about recovery, the focus is treatment again. Any hopes I had of returning to work this year are out of the window.

This means I’ve had to take some decisions. For one, when I moved back to the UK I set up a business to match the one I had in Australia. I was full of hope that the stem cell transplant would work and I could go back to consulting within 3-6 months. I was also working on a business app that I was going to launch under the business.

Obviously, I’ve had no income from this business, only costs. I’m now going to shut it down. There’s no point incurring these ongoing costs in some hope that I’ll start bringing in income soon. I can think about this again in the future if my treatment is successful.

I also have the dilemma of keeping my professional qualifications. I’m now so behind that I need to complete 120 hours continuing professional education (CPE) credits by next March. This is for my Certified Information Systems Security Professional (CISSP), I was able to put my Certified Information Systems Auditor (CISA) in to dormant state (as long as I keep paying the annual fees, at least). If I fail to meet the CPE requirements for my CISSP, it’s back to 2003 - studying and sitting a four-hour exam again. The smart move would be to try and complete as many CPEs now as possible before the effects of the next treatments kick-in. The problem is, it’s hard to get motivated when (1) it may all be in vain, and (2) even if I make it I have no idea when I’ll be able to return to work. At this point, I’m even wondering whether I even want to return to cyber security. It could be the opportunity for a new start. Something different.

That something different could be the iPhone app I’ve been working on. It was just an idea for doing something completely unrelated to cyber security. After a shaky start, I’m beginning to make real progress. Irrespective of how things go, I’m going to keep working on it because, more than anything, it’s a distraction. While I’m concentrating on that I’m not thinking about what’s coming.

Bucket List

You see it in the movies. Someone gets a terminal diagnosis, so spends their final months travelling the world and ticking off items in their bucket list.

The reality is somewhat different. For me at least, I can’t go anywhere. I need to stay close to the hospital, and if treatment fails and it moves to palliative care, I’ll be in no fit state to do anything.

There are a thousand items on my bucket list, but I have no regrets. My life hasn’t been boring. I have a lot to reflect on. That’s why I created My Life in Weeks.

Anyway, less of that. I’m still here and I still have a fighting chance.