Now I must admit that I had hoped for a quick improvement and a blood test on August 3 showed a drop in my WBC from 73.2 in early July to 62.6. There was also some improvement in the platelet count and this was obviously very encouraging. However this did not last and things went back to normal or even worse for in December 2005 my WBC reached its peak of 77.2. To me this seemed most disappointing but Eric told me that he was quite pleased about it all as some of the other indicators showed that things were happening. And happening they did as from then on the WBC began to improve bit by bit.
In Dec 2006 it was down to 45.5, by February 2008 it was 18.0 and at the date of writing in February 2009 it is 10.4 which means it has moved inside the reference range. The improvement in the platelet count has lagged behind; for a long time it was like a yo-yo but recently (February 2009) it has started catching up and is now 136, still a bit to go before it is in the normal range. According to Eric this is fairly normal as it can take up to 5 years for the platelet count to recover. The size of my spleen has also come down and is getting close to normal.
Somewhere in this period Eric suggested that I start using saunas. I checked around the various gyms etc. in our area but they all had done away with saunas. In the end we bought an Infra-Red sauna on eBay and I used that three times a week for about 30 – 40 minutes. I need to run it very hot as I don’t sweat easily. In fact, I normally sweat hardly at all and sometimes I wonder if that has been a contributing factor to getting CLL as sweating helps in the detox process.
It has not always been plain sailing as in July 2007 I had a neutropenic episode. This was a result of an infection in my mouth. About ½ a year before this my top right wisdom tooth slowly started to come through, but only about halve of the tooth came through. For some time the flesh next to the tooth had been tender but I paid no attention to it, thinking it was part of the breaking through process. A few weeks before the neutropenic episode it started to hurt really bad and I went to see my local dentist who confirmed that there was a bad infection and booked me in for removal of the tooth. In the mean time however I caught a head cold (very rare for me) and some very minor wounds on my hands from gardening started to get infected real bad. I went to see a GP who promptly missed the signs and gave me some standard anti-biotics. My temperature then went up to 39.5 so my wife consulted Dr Google and figured out that I probably had neutropenia (very low neutrophils count) which is dangerous as the body looses the ability to fight infections and something the oncologist had warned me about. Contacted my oncologist, got a blood test done which showed that my neutrophils were down to 0.38. By that evening I was in a hospital and on antibiotic drips. My neutrophil count was now down to zero and my spleen up to 20cm (nearly 8 inch). After three days the count was still zero so they gave me a GCSF injection (kind of stem cells) which fixed things overnight and the next day I went home. Goes to show that doctors do come in handy from time to time.
Interestingly enough my platelet count had shot right up to 213 during this episode but came down again soon after that. While I was in hospital the offending wisdom tooth was surgically removed . The lesson from all this: don’t neglect any pain or discomfort in your mouth as you can see that an infection in your mouth can have a significant effect on your blood counts.
Another thing worth mentioning is that at one visit with the oncologist at the IMVS he said to me that he would be giving me chemo therapy yet. This was after I had refused to go down the chemo road but before it became evident that the alternative road was going to do the trick. It seems an unfortunate thing for a doctor to say and not at all encouraging, but I presume that this came out of his own experience with the rest of his patients. In any case I told him that he would not be doing so (remember the positive affirmations!) and recently I asked him if he still thought that he would be giving me chemo to which he replied to the effect that it seemed unlikely. To balance this I need to mention that he calls me “the miracle man”.