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Living with acute myeloid leukaemia

Published on 23/09/19 at 11:48am

Steve Rothberg was blindsided by an AML diagnosis that progressed rapidly with little warning. Ten years later, he discusses his outlook and strategies during the intensive treatment, and how a coincidental GP visit and a stem cell transplant changed the course of what might have been.

What originally alerted you to the fact that something was off with your physical health?

I first became ill at the end of January 2009. I had what seemed to be an ordinary cold. The only thing that was different about this cold was that I just couldn’t seem to shake it off. I progressed very quickly to being told about six weeks later that I was about to start chemotherapy and that I might not make it through the next week. That’s a common story among patients who contract acute myeloid leukaemia – the condition advances incredibly quickly. I did have a cold but the difference was that I had no immune system to fight off the infection and I started to get particular classic symptoms. With acute myeloid leukaemia your red blood cells run down, so I was very breathless and tired; your white blood cells run down so I couldn’t fight the infection, and your platelets run down, and really that was the symptom that kind of tipped me over the edge because I started to see loads of blood spots all over my body, and I thought that was not something routinely attributed to a cold.

How did you actually receive your diagnosis?

By some kind of strange coincidence I was just about to go to India on business. Like most men of my age I didn’t go to the GP and the thing that prompted me to go was that I needed to get vaccinations to travel to India. I went and said that I wasn’t feeling so great but had the vaccinations, and it was a few days later when I started to see all the blood spots that I went back to the GP and said, “Look, I just don’t know if I’m well enough to travel”. I saw a different GP to the first one and they immediately knew what my condition was. They sent me for a blood test and I was in hospital that night. They called me in and said bring a bag, and, more or less, I came out of hospital six months later having had four rounds of chemotherapy. The achievement was that I came out of hospital on my own two feet and not in a box. The problem with AML is that you get an infection and you’ve got no immune system to fight it off. You get some kind of internal bleeding and then your body just can’t fight it and you die.

How did life unfold in the wake of the diagnosis?

I was lucky that I was going to India because had I not [had the trip planned] I probably wouldn’t have gone to the doctor for a few more weeks and that might have been it for me, and indeed had I gone to India and not had that second conversation with the GP that might have been it for me as well. So I felt extremely unlucky to be a healthy person struck down with AML at 43, but I felt extremely lucky that the circumstances had come together just quickly enough to get treated and put back in one piece. I came out of hospital in the summer of 2009 and got stronger and better, but in March 2010 I was told that my leukaemia was back and that I’d relapsed. At that stage the next type of treatment is a transplant so you have to find a matching donor for your transplant. I have a brother and sister and neither of them was a match, so then you go to the registers to try to find one. I was very lucky that I found a ten-out-of-ten match from a donor in Germany through [blood cancer charity] Anthony Nolan. I had that transplant in September in 2010 and fortunately all seems to have worked well for me. I went back to work in March 2011 about six months after my transplant. I built myself back up and now I’m at full speed again, and the only reminder I have of all those things from a decade ago is I now have to take antibiotics permanently. I can tell I’m not quite who I was in terms of fighting off infections and all of those kinds of things, but I’m in a much better state than I otherwise would have been.

How did you find the recovery process?

I’ve been back at work for about eight years now. I think one of the important points that people should realise about treatments for conditions like leukaemia and treatments like stem cell transplants is that they are a cure – it’s not just a treatment that improves quality of life but the inevitable will happen sooner or later. I’m back working full time at full speed, being a parent to my kids, being a husband to my wife, and fitter than most people around me. It’s an incredible treatment to have. It absolutely turns your everything back around and gives you a life back. It’s incredible that that selfless donation you get from a stranger saves your life and takes you from absolutely rock bottom and gets you back on the street again. People do think that for a lot of cancer patients you can give them a treatment and it can just about keep them on the right side of the line for a while, but that’s not been my experience. I am absolutely a fully paid-up member of the human race again.

How did you respond to chemotherapy?

With respect to chemotherapy, the treatment is pretty awful. I had four rounds of chemotherapy in a period between March and July, each of them pretty aggressive. The chemotherapy wipes out all of your immune system, all of your blood counts. It’s a very aggressive form of treatment. It leaves you feeling exhausted, sick for long periods without an immune system so you pick up infections all the time, and every time you pick up an infection, potentially it can finish you off. So every time you pick up an infection there’s a mad scramble in the hospital to find the right antivirals or antibiotics that will bring the infection back under control. What you don’t realise is that when you feel poorly and go to the doctor and the pharmacist and get your antibiotics, they seem to work a miracle, but they only work a miracle because they work together with your own immune system. If you haven’t got a functioning immune system, you’re still in a pretty bad place. So there was a long period when I had infections, and my temperature would be up and down. It’s a kind of torture really because you have cancer so you’re not feeling so great about the world. You’ve got an infection that you can’t fight off, so you’re concerned about where that might end up. You’ve got these terrible symptoms of sweats and shivers; it’s difficult to sleep; you’re exhausted; you’re having a treatment that makes you feel continuously sick. There’s not that much else that can go wrong when you’re in the middle of that, but there isn’t a choice, and the treatment goes on for four months. It’s pretty relentless.     

How was your personal experience of NHS treatment, and what changes would you like to see?

When you have a treatment of the kind that I did you become very familiar with the realities of the NHS, and the first thing I’d say about that is that there are doctors and nurses in the NHS doing an absolutely stunningly good job – but blimey, do they do it in difficult circumstances. I think it’s time to see some better investment in the NHS and better recognition for the staff who work within it.

What advice would you give to those in a similar position to you?

I would say do everything that you possibly can to avoid infection. I lived as a recluse for very long periods where I saw only my wife and two daughters. I made a conscious decision not to see anyone else – no other members of my family, no friends, because I felt that was something positive that I could do that was under my control that would substantially mitigate the chance of catching an infection that might kill me. I would also tell people to keep positive. The treatment is horrible but keep focused – all that matters is that you come through it. Keep positive about the end results. Make plans for what you’re going to do when you get better. The treatment you have is a very stern test for your mental wellbeing and if you allow yourself to let everything get on top of you, that can be enough to tip you onto the wrong side of that line. Those small things can make a real difference.

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