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Extramedullary WM Questionnaire
1.
Which came first? Your WM diagnosis OR your Extramedullary diagnosis (EMD)?
WM
EMD
2.
What year were you diagnosed with WM?
3.
What year did your physician find evidence of Extramedullary Disease?
4.
did you have treatment with an alkalyting agent (bendamustine, cytoxan, fludarabine, cladribine) before being diagnosed with EMD?
Yes
No
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:
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)
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)
8.
Are you currently in treatment?
Yes
No
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)
10.
If we can get a speaker for our next meeting, what question would you like to have answered?
11.
Are you interested in meeting with the group?
Yes
No
