CHLORAMBUCIL

Almost the end of July. This week found me back in CLL Clinic where my blood tests showed no response to the 2nd round of Chlorambucil. WBC up a little and HGB down a little on last month. My consultant decided to lengthen the next course of Chlorambucil to 14 days and so, here I am, on day 3 with 11 more to go. Coughing quite a bit in the evening and getting a bit breathless.

Not all bad though. We managed to get to see our daughter and granddaughters for a couple of days inbetween chemo rounds and spent a week with my sister in Wales. Lots of pub meals so no one had to cook!

CLL - CONTINUING THE ROLLERCOASTER RIDE (2)

By the end of May I was hospitalised with cardiac problems. My heart was booming and seemed to me to be so slow. Everything was an effort. I was admitted to AAU. My stay there was not good. The SHO kept telling me there was nothing wrong. Note to all patients here...be sure to fight your corner. I fought mine and refused to go home. A senior doctor appeared and I was put on a heart monitor. He diagnosed Fast Atrial Fibrulation (going at the rate of a marathon) and Flutter and prescribed betablockers. The following day 2 more junior doctors appeared and suggested that blood was pooling in my heart chamber, it wasn't emptying properly. I was more at risk of stroke and Warfarin was recommended. Given my CLL prognosis and risk of hemorrhage I took the decision to refuse Warfarin but said I would start on Asprin instead. There was no followup in outpatients by the cardiac department. I believe that as I am reaching the end of my CLL journey, it was felt I wasn't worth following up. It was a very low point for me. However, the betablocker had stopped the booming in my chest.

There was a little response to the Chlorambucil and so a second round was started in June. My doc suggested I didn't expect anything from the treatment, then I wouldn't be disappointed. I was to slow right down.

July found me having a lot of angina attacks at rest. This is angina while trying to make a cup of tea or cleaning my teeth and even waking me up a night. My GP sent me to the rapid access chest pain clinic at my local hospital and I was admitted to the Cardiac Ward. Diagnosis? Left Ventricular Hypertrophy and Atrial Fibrillation, happily with no sign of heart failure. After another overnight stay I left with more heart pills and an appointment for a stress echocardiogram in August. The pills are working well and no more angina at the moment. However, I have to stop these pills 3 days before the echo and I admit that this frightens me.

CLL - CONTINUING THE ROLLER COASTER RIDE

At the beginning of March it seemed like I was heading for a remission. My counts were looking reasonable and my doctor suggested that 2011 might be a good year (the last 2 years being so hard). But by the middle of April the white cell count was well on the way up again (40,800). By May it had risen to 71,000 and I was starting to hemolyse again. I was told I am refractory to previous treatments and it was time to think about my future. We discussed hospice and end of life issues. I asked for and received a DNAR form (Do Not Attempt Rescusitation). It was decided that I would start a course of Chlorambucil + Prednisolone as a palliative measure. My doc suggested it was time to speak to my family about my poor prognosis. If there was no response to Chlorambucil then we would discontinue treatment.