I Start My New Treatment

Monday 1st to Sunday 7th September 2008

I am catching up on this week’s blog entry more than two weeks later than intended for reasons that will be obvious in my next week’s entry. I cancel my appointments in Tottenham for the day as I am going down to the RSCH in Brighton for my blood transfusion. Terry and Lesley call by in the morning as Tina has asked Terry if he could help us out with taking some stuff to the tip. They stop for coffee on the way back. Tina drops me off at 1.15pm for my transfusion. My two units only take three hours this time as they are now able to separate out the red cells from the other blood products, so that I do not need quite the quantity I had before. Clever aren’t they? I am on the phone quite a bit making work appointments for this week and next. I am still weary for the rest of the day.

On Tuesday I am back to Brighton for my monthly Pentamidine nebuliser, followed by clinic with Tim Corbett to discuss my new treatment regime and to collect my medications. My lymphocyte count is up to 18.7 and my platelets are down at 42, although the neutrophils are holding up at 1.8. Tim makes the point that there may be a risk of infection associated with my being treated with Dexamethasone (a steroid), due to my already compromised immune system. How prophetic that turns out to be!! There is also a risk of blood clotting with the Thalidomide.I should go on to aspirin to thin the blood when my platelets count goes above 50. They are well below that mark today so I must await developments. The regime is 10mgs of Dexamethasone for four days every two weeks, to run for two or three months, with one daily dose of 50mgs of Thalidomide ad infinitum – or until approval for Revlimid comes through – ha ha!!

I have a day in north London on Wednesday and work from home on Thursday and Friday and start the treatment Thursday morning. The big breakthrough news off the CLL Google alerts today is that scientists in Cardiff University and the Institute of Cancer Research have identified six genes associated with CLL, which could increase a person’s risk of contracting it. This is of course only the first tentative step towards a potential prevention programme, but could give encouragement to future generations.

We have a day shopping in Tunbridge Wells and meet up with Carol for lunch. I am looking for a decent pair of brown ankle boots, but decide to reflect on the prices asked - £100 and £120!! I am finding that my taste buds are changing a bit – water, Smoothies and even beer. I am also getting hiccoughs - all down to the steroids. However the good news is that after only two days medium sized “Henry” in my left armpit has reduced significantly in size – amazing. The Thalidomide, which I take in the evening, is, as predicted, giving me heavy eyelids and a general drowsy effect mainly overnight, rather than running into the day. I have my last dose of steroids on Sunday morning and we have Matthew, Charrise and the girls for lunch. Everything seems hunky dory.