Mike Godfrey

I was born in January 1938 and am a retired GP who was eventually diagnosed with CLL nearly 4 years ago after increasing debilitating fatigue initially thought to be a persistent viral infection.

My lymphocyte count progressively increased from 25,000 in April 2019 to peak at 240,000 by October 2020 together with a falling Hb eventually levelling at 80.

This was despite all the naturopathic treatments to which I had access including regular intravenous vitamin C and blood ozone. By May 2021, as my spleen was enlarging, I decided following my Oncologist’s recommendation to start Ibrutinib albeit with the much cheaper Indian generic at $2000/month.

There were no obvious side effects. Weekly blood tests revealed a rapid reduction by nearly 50% by the end of the first month when my enlarged spleen was no longer palpable. I reduced the daily 3 capsules to 2 and at the end of the second month my lymphocyte count had further decreased to 14,000.

In February 2021, I developed an acute urinary retention requiring urgent catheterization. However, during the procedure my bladder wall was perforated. A subsequent prostatectomy was followed by persistent episodes of painful bladder bleeding requiring repeated transfusions.

I was advised to stop the ibrutinib as enhanced bleeding was listed as a risk. However, both the bleeding and painful cystitis were controlled once the suprapubic catheter site was moved to a higher place in the bladder wall. I restarted ibrutinib.

Concurrently, as of December 2022, my Hb is 93 and my total WBC is 10,000 with Lymphs 5000. Subject to my Oncologist’s approval, I plan to further reduce the ibrutinib to 1 capsule a day if the lymphocyte count reaches the reference range and is confirmed by monthly blood tests.

Right through, I have maintained a daily oral intake of vitamin D 5,000 iu, vit C 4gm in divided doses, N-Acetyl Cysteine 400mg, as well as my heart and bladder supplements.