Below are the first results of the 2019 survey from 114 CLL patients. The results will be updated over the coming months as more CLL'ers complete the survey.
Thank you to those that have submitted their data.
Slightly more male CLL'ers in this survey verses the 2010.
Gender - Watch & Wait v Treatment
This chart shows 2 subsets of CLL'ers, male and female, and if treatment has been received or not. A very different profile to the 2010 survey where both male and female CLL'ers were significantly watch and wait (65%). Where as this survey shows both male and female undertaking treatment.
Age at Diagnosis
It is often quoted that CLL mainly affects older adults with the average age at the time of diagnosis being 70 years. However, this survey indicates that the time of diagnosis is much lower in the range of 55 to 59. The 2011 survey also supports this lower average time to diagnosis.
Years Since Diagnosis
There are 2 male patients in the survey with dates of diagnosis of 26.7 years and the oldest at 33.9 years. Both patients have received at least 2 different treatments. The oldest survivor prognostic marker was IgVH mutated and the other was not known.
IgVH Mutated and Unmutated by Years Since Diagnosis
The chart shows IgVH Mutated and Unmutated CLL'ers by the number of years since diagnosis. Looking at the tail end of the chart it suggests that mutated patients have a longer survival, which supports the medical evidence.
Your Symptoms at Diagnosis
Fatigue, enlarged lymph nodes and frequent infections represent the most common symptom at diagnosis.
How Did You Find Out You Had CLL
Routine blood test cited as the most common reason for finding out you had CLL.
Rai Staging System
This is used more often in the United States which divides CLL into 5 stages:
Rai stage 0:
Lymphocytosis, no enlargement of the lymph nodes, spleen, or liver, red blood cell and platelet counts are near normal.
Rai stage 1:
Lymphocytosis, plus enlarged lymph nodes. The spleen and liver are not enlarged, red blood cell and platelet counts are near normal.
Rai stage 2:
Lymphocytosis, enlarged spleen (and maybe an enlarged liver); lymph nodes may or may not be enlarged; red blood cell and platelet counts are near normal.
Rai stage 3:
Lymphocytosis, lymph nodes, spleen, or liver may or may not be enlarged; red blood cell counts are low (anemia); platelet counts are near normal.
Rai stage 4:
Lymphocytosis, enlarged lymph nodes, spleen, or liver; red blood cell counts may be low or near normal; platelet counts are low.
Binet Staging System
CLL is classified by the number of affected lymphoid tissue groups (neck lymph nodes, groin lymph nodes, underarm lymph nodes, spleen, and liver) and by whether or not the patient has anemia or thrombocytopenia.
Binet stage A:
Fewer than 3 areas of lymphoid tissue are enlarged, with no anaemia or thrombocytopenia.
Binet stage B:
3 or more areas of lymphoid tissue are enlarged, with no anaemia or thrombocytopenia.
Binet stage C:
Anaemia and/or thrombocytopenia are present. Any number of lymphoid tissue areas may be enlarged.
About Your Blood
White Blood Cell Count (WBC) at Diagnosis
A slightly elevated white blood cell count in conjunction with diagnosis through a routine blood test are key indicators.
HB (Hemoglobin) Blood Cell Count at Diagnosis (g/dL)
Most CLL'ers are diagnosed with a normal HB count.
Platelet Blood Cell Count at Diagnosis
Most CLL'ers are diagnosed with a normal platelet count.
IgVH Mutational Status
IgVH mutation status identifies two CLL disease subtypes. Patients with mutated IgVH have a better prognosis. Patients that are unmutated IgVH have a less favourable prognosis.
Treatment or No Treatment by IgVH Status
The data supports the medical evidence that IgVH mutated CLL'ers do better in terms of the need for treatment.
ZAP-70 positive expression is a prognostic biomarker for CLL patients. CLL'ers with less than 20 percent ZAP-70 positive B-CLL cells are predictive of a more favourable prognosis. While patients with greater than 20 percent positive B-CLL cells are predictive of a less favourable prognosis.
The presence of trisomy 12 in CLL at initial diagnosis has traditionally carried intermediate prognostic significance.
Deletion of 13q14 is the most common cytogenetic abnormality and has historically been associated with good prognosis.
CLL'ers with 17p deletion have always been included into the highest risk prognostic category, showing the shortest OS and PFS.
11q23 Deletion is associated with rapid disease progression and a shorter progression free survival.
6q21 deletion is less frequent in CLL'ers and indicates poor prognosis. There would appear to disagreement surrounding its prognostic significance.
Notch1 mutations are associated with poorer outcomes and more difficult to treat CLL.
CD38 Prognostic Marker
CD38 expression is a strong predictor of inferior response rates, shorter time from diagnosis to therapy, and worse OS in patients. CD38 expression can change over time.
This is the current treatment that CLL'er are receiving. As expected Ibritinib is the leader over the former top treatment in the 2010 survey of FCR.
Reason for Current Treatment
To be expected increased whites cited as the most common reason for the current treatment. The same result was obtained in the 2010 survey.
Complications During Current Treatment
In the 2010 survey neutropenia was the largest complication of treatment and was probably associated with FCR being an exacting treatment and the most administered treatment. The side effects associated with Ibrutinib are much less.
Complications During Current and Previous Treatment Ibrutinib Only
The side effects associated with Ibrutinib are significantly different and much less from the 2010 survey.