Extramedullary WM Questionnaire Question Title * 1. Which came first? Your WM diagnosis OR your Extramedullary diagnosis (EMD)? WM EMD Question Title * 2. What year were you diagnosed with WM? Question Title * 3. What year did your physician find evidence of Extramedullary Disease? Question Title * 4. did you have treatment with an alkalyting agent (bendamustine, cytoxan, fludarabine, cladribine) before being diagnosed with EMD? Yes No Question Title * 5. Where are your extramedullary tumors located? Pulmonary Skin Renal Brain (cerebrospinal fluid) Conjuctiva Small Bowel Gall Bladder Breast Liver Prostate Colon Bone (Please put location below in comment box) Soft tissue (Please put location below in comment box) For bone and soft tissue, please put location(s) here: Question Title * 6. Have you ever been diagnosed with an additional form of Lymphoma? Yes No IF YES, what type? (Marginal Zone, Diffuse Large B-Cell, etc) Question Title * 7. Have you had any of the following treatments FOR WM/EMD, Check all that apply: Acalabrutinib (Calquence) Bendamustine Cladribine Cytoxan Dexamethasone Fludarabine Ibrutinib (Imbruvica) Ofatumamab Radiation Rituxan Thalidomide Velcade Venetoclax Zanubrutinib (Brukinsa) Other (please specify) Question Title * 8. Are you currently in treatment? Yes No Question Title * 9. Do you know your mutation status? MYD88 positive MYD88 negative CXCR4 positive CXCR4 negative I have not been tested for gene mutations Other (please specify) Question Title * 10. If we can get a speaker for our next meeting, what question would you like to have answered? Question Title * 11. Are you interested in meeting with the group? Yes No Done
