How long will I live? Survival rate has more than doubled in the last 20 years – more than 50% of WM patients die of old age. New drugs will extend survival rate. Understand “median” does not mean average – half of patients live longer than the median
Should I get a second opinion? YES!
When do I start therapy? Symptoms – fever, night sweats, fatigue from anemia,weight loss, Hemoglobin<100, hyperviscosity, peripheral neuropathy
What should I monitor when I see my doctor? Watch & Wait: Hemoglobin, platelets, M-Spike, IgM, liver, spleen and lymph node size On active treatment: Monitor symptom/sign that provoked therapy, IgM, M-spike
How deep a response do I need? Controversial – unclear if adding new therapies to deepen response after plateau makes sense
Are my kids going to get this? The chance of you getting WM is the same as flipping a coin heads 18 times in a row. The chance of your kids getting WM is the same as flipping a coin heads 14 times in a row.
What can I do to live longer? Lifestyle – diet, exercise! Don’t be obese – clear standards or drug dosing guidelines do not exist for obese people Be strong – frailty may be predictive of decreased cancer-independent survival
Will WM transform into something worse? Richter’s transformation – WM to Diffuse Large B-Cell Lymphoma – occurs in 6% of WM patients. Transformation to leukemia, MDS, twice as likely after fludarabine or cladribine therapy
Is Rituxan monotherapy any good? Works less than half the time, may not last long, best used in combination with other drugs
What’s the deal on maintenance Rituxan? Improved outcome but more infections. Impossible today to draw firm conclusions re clinical effectiveness
Should I be tested for MYD88 gene mutation? No – not as yet part of diagnostic criteria for WM, not used to determine course of therapy, does not distinguish WM from MGUS, diagnostic test not widely available