Great News from the Donor Search

Friday 25th May 2007

We are up to Kings by 10.30am and after having my blood test are soon seeing Andre Jansen, the transplant co-ordinator, to get some insight into the donor search process. I wanted to include some information about this on to my cll blog as it may be of some use to others in a similar predicament. The big news is that the Anthony Nolan Trust has identified four potential donors for me, with the possibility of two more. These are described as “C” code mismatches. The search entails comparing my blood with batches of six others against about 250 identification features or “codes” within the blood cell make-up. A “C” code mismatch is where more than 230 codes match, including all the key ones. If nothing better is found then a “C” code mismatch would be “adequate” for a transplant. The prospective donor is then asked to give a blood sample for health screening and subject to his or her agreement, the stem cell harvesting can go ahead, either at Kings or in the donor’s home country if he or she comes from a long way away. Steve Devereux is upbeat about things. I have no detectable enlarged lymph nodes, although the March CT scan showed that I had some in my abdomen. My blood results today are also pretty good: Wbc: 0.9; Hbn: 10.7; PLT: 184; Neut: 0.8; Lymph: 0.1. However my iron levels are rather low and he will request the RSCH monitor them over the weeks to come. My weight today is 75.3 kgs. and blood pressure 152/77. He wants me to continue with the remaining eight weeks of the treatment programme to get my bone marrow in the best possible state for the transplant. It now appears that the most likely time for CMV to emerge is within the first four to six weeks of treatment, with a lesser chance of a recurrence after that. So CMV may not be as much a problem as earlier thought and Methylprednisolone is not expected to drive down the white cell count any further. We are now exactly half way through the 16 weeks of the clinical trial treatment programme, so it is time again for intermediate progress checks. I will have to return to Kings in just over a week’s time for a CT scan and a bone marrow sample - ugh deep joy! But the other good news from today is that my “clean” diet does not mean I cannot drink draught beer. We mentioned it in passing to Steve Devereux and he could not understand why it was on the list of things to avoid - so I was able to celebrate the all round good news at lunch at the Sun and Doves with a pint of Old Speckled Hen! We shared our good news with Anna and Matthew over the telephone and text messages went out to sisters and brothers. This has been the best day we have had for months and the best news I have entered on my chronic lymphocytic leukaemia blog since I started it.

Week of 21st to 28th May 2007

I start the week with my Campath injection and then call Jonathan Samuel to discuss that he check with Steve Devereux that I will need my Campath supply topped up when I go up to Kings on Friday. I also make an appointment for Friday with Andre Jansen to talk about the bone marrow donor search. I have my weekly blood test at the RSCH on Tuesday. The results are good: Wbc:1.0; Hbn: 11.4; PLT: 168; Neut: 0.8; Lymph 0.1; my weight is 75 kgs. and my sodium levels are back to normal! I make provisional arrangements for the Methylprednisolone sessions for next week. That day Anna calls from France to tell us that they are approaching Dieppe at the end of their drive up from Greece, but that she has a sore throat and a cough - so they cannot come to us to stay, which is a shame. However, as the weather is so good, we later arrange to meet up for a later afternoon picnic at the Jack and Jill. That way we see each other, but with Anna sitting “down wind”, should manage to avoid any nasties being transferred to me! We are the centre of attention for ten rather large horses, of the Cob variety, who wanted to join us eating the food! It is Thursday and unfortunately, due to my neutropenia I have to cancel going to the ex-CSD gathering at Lewes to mark Chris Pascoe’s retirement. I hope to catch up with him later. Instead I spend Thursday dibbling in the back garden and fixing up a window box outside the kitchen window. I am feeling very good in myself and have no effect from the Campath, other than possibly being a little tired on “Campath days”. On Saturday we have visits from Peter Felchlin en route from L.A. to the Scottish golf courses, Anna with Eva - going up to Mull themselves on Sunday - and Matthew with Ella, who is staying with us until Monday. The good weather has gone, the clouds are heavy and the temperature has dropped at least 5 Celsius. Typical for a Bank Holiday!