UK CLL Forum, UKCLLFORUM

Patient Profile for: Andysnat



General
Mutational Status
Positive Prognostic Markers
Neutral Prognostic
Markers
Negative Prognostic
Markers
Chromosomes
Clinical Presentation
Drug Allergies

DOB: 1956
Male

       

 


 


General

I was diagnosed in 2005, following a blood test at the local hospital during cardiac assessment. I was assessed for sleep apnoia, lots of high blood pressure monitoring, incredible scans on my heart to look at a dodgy valve, ECGs and a re assessment of my Hypertension medicine.

A few years earlier, my GP had given me such a roasting about my cigarette habit that I quit smoking there and then. At that time I had an enlarged left ventricle of my heart, caused by untreated Hypertension. Three months later, the Twin Towers in New York were attacked. A month after that, I went to Sri Lanka to work, and started off my first week in the Hilton Hotel Colombo, adjacent to the twin towers of the Columbo World Trade Centre. During my time in Sri Lanka, when shaving one morning, I noticed a hard lump under the left side of my jaw. I finally admitted to myself only last year that this was an enlarged sub-mandibular node.

In recent discussion with my GP, it seems that I had elevated Lymphocyte counts back in 1996, presumably around the time I had an attack of pneumonia. I can not remember having blood tests done other than at the times mentioned here. Was I suffering from CLL back in 1996? I think so, but we will never know.

I received a letter from the heart consultant informing me of an unusual elevated white count, which he had referred to the Heamatology team, and that I should expect a letter from them. I thought nothing of it, but learned later that my wife and parents were very concerned.

The first time I met my consultant, who I always think of as Dr. Strangelove, he sat me down in a one bed room on the heamatology ward with a cup of tea, and asked me what I thought about all this. I asked him what my white count was, and he said 99. I asked him what was normal, and he said about 4. I suggested that there were a number of reasons for elevated white cell counts, starting with stress, at which he shook his head. He also said no to an infection, and that left me with Leukaemia. He nodded.

He wasn't able to confirm CLL at that time, and needed another set of tests, but he was very confident that I had CLL, and this was confirmed within a week or so. In that initial discussion I suddenly found a cause for the night sweats I had experienced for years.

Prior to that, I had no idea that I was ill.

Strangelove had managed to give me this news without upsetting me, treating me like an intelligent adult. I have to say that I have felt a great deal of trust in him and respect for him since that day. I feel very pleased about that.

I began to recognise the tiredness I experienced regularly wasn't age creeping up on me, and the night sweats were suddenly attributable, to an illness, rather than having the heating on too high, or living in the tropics.

For the six to twelve months prior to treatment, I contributed less and less at home, getting exhausted by some simple hoovering, and napping more and more. I stopped gardening, and mowing the lawns, and became quite burdensome to everybody around me.

Treatment Summary

Prior to treatment, I had a CT scan, which confirmed enlarged nodes throughout my body, and an enlarged spleen. The only nodes I could feel myself were the aforementioned sub-mandibular, and an occipital node at the top of my neck, at the back.

I opted for FC, Fludarabine and Cyclophosphamide, as I quite fancy the idea of a long, deep remission, which from clinical trials seems to be the case for many patients who take that treatment. I was to take six cycles of a week on and four weeks off. I conquered my fear of needles after the first month, and I think nothing of it now when I have a blood sample taken.

Strangelove and I called a halt to my treatment after round 4 - my blood results were all in the normal range, more or less, and he could see no benefit to carrying on with further chemo. The synergistic effect of the two drugs seemed to work very well for me, bringing my counts down rapidly after the first round, and the nodes faded away soon after.

I didn't enjoy the chemo weeks. The fourth cycle was tedious and uncomfortable, and the effects of the chemo are cumulative, but I have written about them elsewhere. Ask me about it within the forum if you want.

I'm nearly five months post treatment as I write this, and I have seen an improvement in my fatigue and tiredness, and a reduction of my night sweats. Four months post treatment, Strangelove and I agreed that I would see him again after a further six months.

My last set of bloods were basically normal. Lets hope they stay like that for a while.