For one reason or another, I have become, once again very slack in updating the website. Since the last entry in February quite a few things have happened.

26-Feb-2004 :: DLI: Round 3

A few weeks after my 'anniversary' blood test towards the end of January, my consultant and I deceided to bring forward the date of the round of DLI injections, from April to the end of February/begining March. The PCR from January's appointment showed that the 44% count had risen to over 60%. The white cell counts on the standard blood test reflected the large PCR counts by showing signs of higher than usual counts. Since the transplant my white cells count has been in the region of 3-5. (That is 3-5 million cells per litre). Now Januarys blood tests showed the white cells count to be at 7.8. Even though my consultant was erring on the side of caution before finally deceiding that the next DLI was definately required, it was plain to me that the leukamia was defeinatly on it's way back.

We set the date for 26th February to receive the thrid DLI injection, the first of the 'big' ones. We were going to use the remaining lymphocytes from the donor for these injections which translated into 6 injections of DLI. My brother kindly took the day off from work to accompany me to hospital. The standard venflon/canular needle was inserted into my arm, bloods were taken for testing and anti histamines were infused. The first of six injections was given to me. Straight away I felt the preservatives from the defrosted cells. A funny taste fills the mouth and drowsiness almost immediately sets in.

Midway through the procedure I saw the results from the blood test taken 30 mins earlier. The white cell count was 11.6. There was no need to even to ask about the PCR levels as this count was above the normal levels of 4-10. This was more than conclusive proof that the DLI injections is was receving were necessary.

Once the first injection was completed, the next one had to be defrosted which required a few minutes. This time is also spent looking out for any signs of a reaction; there were none. The same again with the second injection; the funny taste in the mouth persists and you become even more drowsey. This process continued until the final injection, containing the last of the cells orginally harvested from the donor a year ago, was completed. By now I felt very drugged up and fell asleep for an hour.

Lucky that brother had driven me down, as there was no way that I would have been able to drive back home by myself without having an accident. After all the appointments I call my parents to let them know how things went, and this time my father was telling me how he felt sure that this DLI was going to be the one that finally worked. He often gets hunches about events, and wanted to let me know about this one.

2-Apr-2004 :: Did the DLI work?

Four weeks later was my appointment to find out whether the DLI had started working. I had just begun cycling to work in the centre of London the week before and thought it would be a good idea to cycle to hospital first and then to work as the hospital is almost on route to work. A lack of preparation was my undoing as haddn't yet bought my cycling emergency/repair pack. I fell victim to Murphy's law and collected a puncture 4 miles from hopspital; not good news. I walked half of it with my bike and luckily managed to get on a bus for the remiainin 2 miles.

During the previous two weeks I had made a mental note of the mouth ulcers that I'd been experiencing on my tongue and gums. The tongue ulcers are like those we get after drinking some freshly squeezed orange juice or other acidic drinks. Except that I had three on one side of my tongue, which had become a little uncomfortable. The frustration was that these ulcers had persisted for a couple of weeks. Normally if you get an ulcer it stays for a day or two. I had tried using Bonjella, a mouth ucler ointment but it didn't really help, and the gum uclers made it a bit tricky when brushing my teeth. I have never suffered this way with ulcers before, apart from the months leading up to my diagnosis nearly four years ago, and I was aware that recurring mouth ulcers was one sign of leukaemia; a result of a slightly less effective immune system.

I was certain that there was something happening within. Over the last couple of years since the transplant, I have become quite sensitive to the changes in my body and feel as though I am able to recognise when something is different, and I could certainly feel the difference in my body. My deduction was that my immune system was no working as well. This would almost certainly be due to the lymphocytes not being as effective as they would normally be.

Feeling pretty cheesed off, the blood results only exacerbated my emotions when I learned that the white cell count had risen to 16 from 11.6 four weeks earlier, seemingly confirming my suspicions. My consultant could see my disappointment, but was still keen to point out that the DLI treatment is a highly effective treatment, and that it can take a month or two following the DLI injections for an effective response should it occur. I found myself contemplating 'what if' scenarios, because it seemed clear that achieving a remission was not going to be as 'straight forward' as had though to be the case earlier. My consultant wisely suggested another appointment in three weeks time in order to be certain that the DLI had indeed not worked, because of the time lag that exists between the DLI injections and an effective response. He still felt is was slightly premature to come to the conclusion that the last DLI haddn't worked.

From my perspective, I was pretty sure that the next blood test would confirm to me the DLI haddn't worked and it was time to seriously consider alternatives. Gliveec was mentionned at this point, but in reality, I was already begning to alter my expectations and had started to prepare myself mentally for another fight. There comes a point when I need to stop relying on hope and start preparing myself for the future, and I felt this was the time to do so. It doesn't matter if the DLI isn't working. One way or another I'm going to fight this, but I still don't believe in my case that Gliveec is the answer. I want a non drug induced remission. In other words I want to be free of the disease using the bone marrow transplant and DLI injections. If this means having another bone marrow transplant, then that's what I'm prepared to do. So I started preparing myself for the possibility of another transplant should the DLI fail.

My consultant was still assuring me that the DLI is highly effective. The statistical mean with DLI injections shows that the third injection is the one that usually works. Just because my counts were rising, didn't mean that I wouldn't respond to an even higher dose. That being the case, I felt more comfortable considering all outcomes, incase it didn't work. I'm not trying to preempt bad news, but I'm trying to be realistic. I don't want be caught out by unexpected bad news and be upset because I didn't want to accept my situation. None the less, I was still pretty pissed off, especially I had to get around with my bike and a flat tyre. I remember my father telling me he felt that the DLI would work. I don't tend to take people's hopes seriously. I prefer to realy on my own feelings. Desipte this, when I called home to tell my parents the news, and explain the possible implications, my dad still said that he felt things would work out. I think this is also how family and friends deal with situations like this. When something is out of your control we have a tendency to hope and pray and believe that things will work out. If that helps then it's fine, but I don't like to 'hope' in the sense that everything will be alright. It's almost as though I know everything will be alright, but it's going to be a very hard struggle.

26-Apr-2004 :: Turning the corner

Returning three weeks later, I was going to be ready for evidence that my counts were even higher than last time. I had been thinking more about my results over the last three weeks and felt better having accepted the situation. At this point we aren't even concerned with the PCR count although the test is still being performed, as the white cell counts are evidence enough of the rising leukaemia. The tongue ulcers had gone, but my mouth was feeling a little tender. I could still feel that there was something happening inside.

This week my white cell count was at 15.5. In other words the leukaemia haddn't progressed from last time. Well, maybe it was taking a break, a bit like after a rapid expansion of an empire, the leader takes stock of new territorries before embarking on more conquests. Conversly, my consultant saw this as potentially a good sign. His arguement was that if the DLI had indeed been ineffective, then he would have expected a proportional rise in my white cell count from my last appointment, as had been the case three weeks ago. He also reminded me that if the DLI is going to work, it will take between 4-8 weeks following the DLI before the blood starts to show signs of a response. The third DLI was was 26 Feb, so this was exactly eight weeks post DLI.

He suggested another appointment in three weeks time would paint a more accurate picture of what was really happening. If the counts rose again then we would know for sure the DLI haddn't worked. On the other hand if the counts fell, that would be a sign of the DLI working. My father was quietly happy with the results, and repeated his intuitions that things were going to work out. I was relieved that things haddn't got worse, but having had my expectations knocked a number of times in the past, I didn't want to rely on other people's feelings and intuitions in case this was a one off result.

23-May-2004 :: The Begining of the End?...

After returning to the UK from holiday, I found myself in the usual Monday morning traffic after having decieded to drive to hospital. It's actually quicker to cycle to hospital than any other mode of transport bar motorcycle. I was wondering what results the blood test would bring. The mouth ulcers had healed up, but now my mouth felt very sensitive. It feels like I've had my teeth sharpened, because when I move my tongue around in my mouth it is a little bit sore, and my mouth feels quite dry. There is also a lot of flegm accumulating in my throat especially in the mornings, and it feels as though I've got something stuck in my throat.

My consultant greeted me with notable enthusism for the appointment wryly enquiring if I was waiting for my results. No sooner than we had sat down, he told me my counts. My white cell count had fallen from 15.5 three weeks ago to the normal level of 4.8 where it last was five months ago. As if I was in any doubt as to what that meant he said confidently that this was clear evidence of Febuary's DLI working. In the space of three weeks, the white cell count had reversed the process that had in six months seen my counts rise from a seemingly normal level to 16 million cells per litre.

With all the minor set backs of the initial relapse and the subesquent failure of the first two DLI injections, this was pretty emotional news. I was pretty taken aback and didn't really konw what to say apart from smile and agree with Francesco my consultant that things were looking quite good. I thought of what my father had said a couple of months back when I was about to receive the DLI in February. Somehow he had been right, whether it was blind faith, or his firm belief in St Anthony to whom he and my family often sent prayers, or just a coincidence, or just the mechanics of the DLI, but things were looking good. My consultant let me in on his earlier optimism three weeks earlier saying that he had refrained from letting me know just how significant that last result was when the bloods had stopped rising as he didn't want to get my hopes up before a definitive sign such as today's result.

I told him about my mouth, but he wasn't surprised given that the graft vs leukaemia effect I was now experiencing implied that there would be some slight effects of graft vs host which in my case was the driness and sentsitivity of my mouth. Although the white cell count looked normal, we now have to go back to monitoring the PCR counts. As it took a long time before the gradual increase in PCR counts resulted in an increase in the standard blood test white counts, so it would be the case that even though the standard blood counts had fallen to normal levels, it would still take another few months for the PCR counts to fall to very low levels, and eventually to zero if it works as expected.

On the basis of the results my next appointment is scheduled for 14th June, the day after I return from the Le Mans 24 Hour race.