CLL Tracker Updated

Topic Made On: Apr 17, 2019 11:31am

Gender: Male
Posts: 98
Thank you to everyone that has participated in the 2019 CLL Tracker survey, to date there has been 114 respondents. The latest results are published at

A brief summary of some of the key points from this year’s survey:
• The most common age of diagnosis is 55 to 59 years.
• The longest survivor (Years Since Diagnosis) is 33.9 years. A patient who has received treatment and is IgVH mutated.
• Fatigue, Enlarged Lymph Nodes and Frequent Infections are the most common Symptoms at Diagnosis.
• A slightly elevated white blood cell count is often seen at diagnosis.
• Most CLL'ers are diagnosed with a normal HB and Platelet count.
• IgVH Mutational Status and Chromosome Abnormalities are still not known by a significant number of CLL’ers.
• Ibrutinib is now the most common current treatment.
• Patients see a much lower occurrence of complications with Ibrutinib.

The full results can be viewed at

Whist some of the results are already significant, others need more respondents to be significantly valid. I would therefore like to request your participation (a few minutes if you have not received treatment, and only 10 minutes if you have received treatment).


UK, Bournemouth. Dx May 2000. Age 63.
2002 Oral Fludarabine.
June 04 and Jan 05 4 weeks of Rituxan.
Oct 05/Feb 06 monthly Rituxan and Chlorambucil.
July/Dec 08 RFC.
June 2012 Bendamustine and Ofatumumab, but changed to Rituxan.
2014 to date IVIG.
Jan 2017 Ibrutinib.
Trisomy 12 (NOTCH 1 and SF3B1 unmutated), IgVH mutated, ZAP70 -ve, CD38 -ve.

You must be logged in to post a comment. Login Here