@breathernow Hi Michael and welcome to Connect. Shoulder shrugging sure isn’t much of an answer when you have medical questions! I’m sorry you’re not finding much help with your Waldenstrom macroglobulinemia (WM) diagnosis. (Also known as LPL or lymphoplasmacytic lymphoma, Waldenstrom’s is one form of this disease)

To help get you started with a little information about WM, here are several links to educational articles for you.

These from Mayo Clinic: https://www.mayoclinic.org/diseases-conditions/waldenstrom-macroglobulinemia/symptoms-causes/syc-2035996breathernow

Mayo Clinic Proceedings: https://www.mayoclinicproceedings.org/article/S0025-6196(19)30090-4/fulltext

Another helpful article on lymphoplasmacystic lymphoma is from Healthline.com https://www.healthline.com/health/lymphoplasmacytic-lymphoma

As you read through these articles you’ll find that WM is often a slowly developing form of lymphoma so many patients may go years without treatment. When the time comes there are different treatment options your hematologist may consider such as biological or targeted therapies, chemotherapy or in some cases a stem cell transplant.

You may wish to connect with other members living with Waldenstrom’s in these discussions:
- Waldenstrom macroglobulinemia Recently diagnosed https://connect.mayoclinic.org/discussion/waldenstrom-macroglobulinemia-recently-diagnosed
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- Waldenstrom macroglobulinemia: What to expect during watch & wait? https://connect.mayoclinic.org/discussion/waldenstrom

These are just two of the many discussions with members who have WM. More discussions can be found by typing in Waldenstrom macroglobulinemia in the search bar at the top of the page. Feel free to just into any conversation! If you want to tag a specific member, just make sure to type @ in front of their @name. The member will get a notification.

Hopefully this is enough to get you started in finding out a little more about your diagnosis. Being in the active surveillance period, I know it can feel like you’re waiting for the other shoe to drop. But it doesn’t mean you put a hold on life. Keep enjoying each day to the fullest. If the time comes when your WM status changes, there are options to help you carry on.
How often do you have follow-up appointments? Does your doctor take routine blood work?