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Patient Summit Q&A

Answers from the experts from your questions and concerns.

There were so many important questions raised at the Patient Summit last October that not all could be answered over the course of the day.

So we asked two of the expert clinicians who spoke, Dr Shirley D’Sa, from University Collage Hospital London (UCLH), and Professor Marie José Kersten, from Amsterdam University Medical Centre (AUMC), to take time out of their schedules to answer them for us.

The questions they have been answered include the following which we know will be of real interest and concern for many of you, so you can watch it below or visit our You Tube channel to view more WM videos. If you have follow up questions then please do get in touch via the Support Line 0300 373 8500 or email us at

Your questions answered!

Once you’ve started on a BTK inhibitor will you ever go back to active monitoring, or are you then on lifelong treatment, including changes in BTK inhibitors when they stop working?

Is there a certain level of IgM that decides when treatment should start?

How long a life do you have with WM? Can you ever be remission free from cancer?

What options are available for patients who progress on BTK inhibitors?

Can pain in various joints be related to cryoglobulinemia and WM?

Can WM make diabetes more likely?

Does the IgM paraprotein directly affect the nerves?

Is a WM patient who is about to be treated for the first time eligible for clinical trials?

If you are on a BTKi inhibitor, is it recommended to discontinue its use for a few days in order to get vaccinated? (e.g. COVID/flu)

Is fatigue the main symptom in other blood cancers or is it something specific to Waldenstrom’s?

What experience exists in Europe with the autologous stem cell transplant treatment?