@deljr Welcome to Mayo Clinic Connect! I'm glad you found us; by the way, how did you find us? I'm always curious to hear people experiences and stories!

Here is a link to what Mayo Clinic has to say about this rare blood disorder: https://www.mayoclinic.org/diseases-conditions/waldenstrom-macroglobulinemia/symptoms-causes/syc-20359967

What does your hematologist/oncologist suggest as a course of treatment for you, now they have seen some nodules on your lungs? Have they told you what those nodules are, or is further testing warranted? Have additional blood tests shown your IgM numbers going up out of normal range?

While this condition is considered a stand-alone disorder, it can also fall under the umbrella of Non-Hodgkins Lymphoma. Within this group you found, Blood Cancers, there are some other conversations you might find useful to take a look at. From what I have been able to suss out, Waldenstrom can be low-level, and watch-and-wait after some treatment is common. I myself have multiple myeloma [initial staging at Stage III highest stage] and hoping to bring my IgM numbers down enough to go on a maintenance regimen at some time in the future.

I hope you have a support team available to you in the form of family and friends? Also, ask at your cancer center if there is a patient advocate or support group available for in-person or Zoom meetings Will you do that and let me know?
Ginger

I was diagnosed and treated for Waldenstrom in Jun2018. Do you or anyone else know at what level IgM and the Kappa light chain should be to consider restarting treatment?