Hit with a Different Sledgehammer

Saturday 22nd to Sunday 23rd December 2007

I must confess to spending both days in deep gloom. After going through all that this year has thrown at me, to find that the route to potential cure is blocked off is a tough one. Despite talking things over together - as best we can - I cannot get over the shock of Friday’s news or put things into perspective. I call Daphne and Peter with my news, but do not really feel much like talking to anyone else yet. I look up Revlimid on the internet and read a very informative article by Dr. Chaya Venkat of Arizona published 30th January 2007 on the CLL Topics website. Revlimid is the brand name for Lenalidomide, a drug in the infamous Thalidomide family. It is very early days but from trials in the USA, it seems that it has some prospects for patients with p53 defects like me. I am not sure if I am heartened by the information or not. It makes comparisons with the “Sledgehammer” treatment of CamPred, which I have had, stating that neither of them is a “walk in the park” - don’t I know it! - but with unknown side effects as yet for Revlimid.

I am still needing about two hours sleep, usually in the afternoon. I am also trying to do my physio-therapy breathing exercises, however I don’t seem to be able to cough up quite so much stuff as before. Perhaps I need a nebuliser to free it up. I shall no doubt find out on Thursday when I have my Pentamidine. On the plus side I book a week in La Gomera from Sunday 6th January and we make a start on decorating the house for Christmas.

Friday 21st December 2007

The news today comes like a body blow to the solar plexus, especially after all we have been through this year. We learn from Dr. Steve Devereux that the condition of my lungs is such that the risk is too high to go for the transplant, certainly at the moment. We had seen his registrar, Dr Jindrinska Lindsay, beforehand and she had tried to prepare us for the news by mentioning the increased risk of fatality that was now present. But it doesn’t make much difference to how we eventually receive the news. The CT scans show no improvement between the one taken on 7th December - after my two weeks of chest treatment - and the previous one. My lungs have scarring and dilated alveoli, neither of which are repairable. The damage has been caused by my history of chest infections and with the intensive treatment I have had having made me more vulnerable to them. Steve Devereux puts the facts to us very carefully and sympathetically, but it doesn’t alter the sense of shock and disappointment we feel. He will refer me to a chest consultant for an opinion on whether there is any prospect, with further therapy etc., that my lungs could become stronger, but my senses tell me that the prospect of a transplant is now pretty remote. I say that I am happy to be referred to Dr. Jackson at Brighton, who saw me when I had my second bronchoscopy and who recommended my recent two week treatment plan.

Should the transplant not be the viable way forward, Dr. D mentions that a new drug is emerging on the scene, called Revlimid, which has shown some promising prospects of creating remission. A clinical trial is being put together by one of his national colleagues and he will explore the possibility of my being included in it. In the meantime I am to resume infusions of immunoglobulin on a three to four week basis. (My most recent infusion was on 24th November as an in-patient.)

We also discuss my loss of appetite and weight, which has been with me since my sickness session following the bronchoscopy in Brighton on 15th November. He suggests that I resume Omeprazole capsules as they might re-balance the workings of my stomach. Failing that being successful, they may have to have a look at my stomach with an endoscopy. I hope not! My blood results today are - Wbc: 2.99; Neuts: 1.9; Lymph: 0.7; Hbn: 10.3; and PLT: 140.

With all that bad news coming our way, we check with Dr. D if getting away to La Gomera for a week in January would be ok. “Seems like a very good idea.” was his reply. We could really do with a week of warm sun. Nonetheless we drive home very down beat. I call Anna and Matthew in the evening to pass on the bad news. This has not been a very nice Christmas present.

Monday 17th to Thursday 20th December 2008

I have an afternoon clinic appointment at the RSCH with Ros Johnston. She tells me that my second CT scan shows no change from the earlier one. At that time I do not see the significance in this. My blood results are good - Wbc: 6.2; Neuts: 4.5; Lymph: 1.1; Hbn: 10.8; and PLT: 139. My weight is down again to 71.2 kgs. I meet up with Anna and Eva for some very successful Christmas shopping on a very cold day. Thank you Anna!

I have a visit from Peter and Sue on Tuesday and we go to the Royal Oak for lunch of soup and a sandwich. It is good to see them. In true brotherly spirit Peter brings me a superb selection of beers, fully in the knowledge that I have my taste back in that department! I have been to my doctor’s surgery for repeat prescriptions as I only had two weeks’ supply on my discharge from hospital. My GP rings me to verify my need for my anti-fungal medication, Voraconozole. Apparently it is £1100 for two weeks’ supply and he has to get clearance from the Primary Care Trust. I don’t know how long I will have to have it, but I am sure getting my money’s worth!

Anna flies back to Glasgow at the crack of dawn on Thursday. I am not up to going to Gatwick that early, but have a visit from Derek O. later in the morning. We have tea and long chats. I am back to the Day Unit in the afternoon for line care and my blood test, which are good yet again - Wbc: 3.5; Neuts: 2.3; Lymph: 0.8; Hbn: 9.9; and PLT: 140. My weight today has gone up a bit to 71.4 kgs. My sleep and food patterns are no different.