Good News / Not-so-Good News

There's good news and not-so good news. The good news is that the PCR counts have really fallen and are lingering around the 0.005 mark which is a very definitive sign of the anti-leukaemia effect the DLI has had on the bloods.

In the last few months, my leukaemia counts have responded very well to the last DLI injection. The not-so-good news is that I've been gradually experiencing various changes in how I feel. This began with a sensitive mouth, followed by the growth of heavily scared finger nails, dry eyes, tightening of my tendons, loss of mobility and then a sort of lethargy. It's taken me time to realise that the tiredness isn't just down to the daily grind commuting into and out of London. I've been feeling very tired every day after work and have gradually stopped my regular weekly squash matches and weekend kitesurfing sessions. Cycling into London is not possible anymore as I just don't have anywhere near the same energy levels as in April.

Then in September, my lungs just went over a two week period. I went from being able to trot up six flights of stairs at work, to hardly being able to walk up them without feeling like I'd just run a four-minute mile. A lung function test showed the obvious; that all my lung functions were below expected for my weight and height.

In short, these are all side effects of a GVHD reaction. Now, whilst the discomfort with my mouth, or scared finger nails are all easy to live with, losing around 60% of your lung function isn't. After some strong persuasion from my parents, I took some time off from work. It was difficult at first to acknowledge that I've got to take a step back and re-focus on my health, but on my first week off from work, I realised how completely run down I was, and how much effort I'd been putting in just try and maintain a 'normal' life.

When your body slowly weakens you don't notice the difference from day to day, but looking back six months, it was clear I was just run-down. The first decision was to stop working, which was actually very difficult. It's taken quite a long time to get back to full speed at work, and I felt like I was really making good progress, and then to realise I've got to forget about that and refocus on my health required a reframing of my objectives.

GVHD

It's looking pretty clear that I've got a chronic GVHD, and we need to intervene a little to stop the lungs deteriorating. To that end I was put on a steroid inhaler to try and treat the lungs. The immune system has been good at attacking the relapsing leukaemia, but after having almost eradicated the leukaemia, the active immune system has found that it wants to attack various parts of my body, and the lungs are the most significant victim. The lymphocytes are aggravating the small airways in the lungs, which have become inflamed. As these already small air passages are now inflamed, very little air can pass to the alveoli where the oxygen from the air goes into the blood and the co2 gets passed back from the blood to be breathed out.

I can't supply myself with fresh oxygen, and I've got a lot of co2 in the lungs that I can't get rid of. Therefore are doing any mild exercise like running 30m, I feel asphyxiated as though I've got a plastic bag on my head. It then takes several minutes to get my breath back. It's a strange feeling as the muscles aren't tired, but I'm practically passing out.

The steroids in the inhaler should work to relieve the lining of the lungs from the aggravation and swelling of the inner airways caused by the lymphocytes. If the swelling goes down, then more fresh oxygen can get into the lungs and hence my body and more co2 can be exhaled.

Weightloss

With my time off, I've been trying to get back in to some kind of physical form, but that's been very difficult. I can't really do much other than walk, and a mild form of yoga. The yoga is to try and re-establish some of the mobility that I've lost recently. Trouble is I have to do it every other day as my joints and muscles are pretty sore after each session.

I've also lost my appetite and don't really have any cravings for food. So I'm eating a bit less and not doing much exercise. My body is in hyper-metabolism, meaning that it requires more energy to sustain itself due to the constant attack from the immune system. Over the last two months I reckon that I've lost around 10 kgs, so my morning un-laden weight is around 70kg. I haven't weighed that much since I was 14/15, so I'm looking a quite thin. Most of the weight loss has been muscle, as it is being broken down to supply the body with energy. There's little that can be done at the moment, apart from some slight muscle work, but that it's easy due to my difficulties breathing. Also, overeating isn't such a good idea as I may put on more weight, but that will mainly be fat, which on its own isn't preferable.

The next stage may be to take steroids in a big way if the steroid inhaler doesn't succeed in arresting the growing lung problem. As steroids are an immunosuppressant drug, there is the possibility that taking them may destabilised the anti-leukaemia effect. It's now almost become a case of LvL or Leukaemia vs Lungs. That's the next decision.