Waldenstrom macroglobulinemia (WM): Deciding treatment options

@loribmt
Thanks for the input. Deeply appreciated. I was diagnosed only recently with WM. I don't have any side effects yet. Not sure what to do next. I'm at Fred Hutch Cancer Research Center in Seattle, WA. They have been great. They said "wait and watch". Peggy

Hi Peggy! Welcome to Mayo Connect. You are in excellent hands with the care teams at Fred Hutch. That clinic has been at the forefront of blood cancer research for decades.

I know ‘watch and wait’ can feel like you’re listening for the other shoe to drop but with blood cancers such as WM, changes don’t just happen over-night. Many blood related issues can take years to progress to a point of requiring treatment, if ever.

It can be hard to shake the thought of ‘what if’ this happens…well, mind games and distractions are useful for moving past that. So I hope you’re able to take comfort in the fact you have a great team who will monitor your labs, following any trends that might show up on the numbers and will be ready with a treatment plan…if or when it’s required. In the meantime, since you’re not having symptoms, nothing has really changed since your diagnosis, except your knowledge of an ‘underlying condition. If my past experience can be of any help, please just keep living your life ‘like they left the gate open’ and adopt the ‘if/then’ approach…IF something changes, THEN I’ll deal with it. Worrying about things you can’t predict just causes undue stress. If you’re living in the great Northwest, it’s such a gorgeous area. Nature can be healing so I hope you’re spending time enjoying walks with Mother Nature. ☺️

Just curious, since you aren’t having any symptoms with your WM diagnosis, was this discovered during a routine physical?

Yesterday I was diagnosed with Waldenstrom's macroglobulinemia; I have the MYD88 wild type. My primary symptom is peripheral neuropathy, with my feet worse than my hands. It first started ~5 years ago, but has progressed significantly in the last year or so. I have a thousand questions at this point, but will ask the following of this group:

1. Has anyone experienced neuropathy this early on in terms of diagnosis? What treatment(s) have you had, and have they been successful? My doctor is considering rituximab, which she normally would not start at my current IgM level of 800, but she thought perhaps it would slow progression of my neuropathy.

2. For those who have MDY88 wild type, what has been your experience? Are you being treated differently than patients with the mutation? I understand that the wild type tends to be more aggressive, and is less responsive to some standard treatments.

Any advice on how to navigate these early days would also be welcome. I was only diagnosed with MGUS in September.

Thank you.

My WM double wild type was diagnosed after a BMB 6 months ago that showed 20% involvement. I was labeled MGUS since a routine blood test in 2024 showed IgM around 550. IgM increased to 2200 until it dropped to 1700 6 months ago. I'm still asymptomatic. My oncologists is very inexperienced, but is willing to allow a second opinion when treatment is needed. Good luck to you.

@crraining
I was diagnosed with MF two years ago and have been on 500 mg Hydrea daily since then. Added WM a year ago and found that 4 infusions of Rituximab helped the neuropathy quite a bit. Now I’m due for more Rituximab and hoping for similar relief.

@crraining What does it mean to have a "Wild Type" of MYD88? My test came back as "suspicious" for MYD88. Is that the same as "Wild"?

I was diagnosed with WM in 2024 and started Brukinsa. After three months with minimal improvement, offered choice of continuing or BR chemo regimen for six months. I chose the BR route and have had continuous improvement trend in labs/bone marrow biopsy. Now on Rituximab only infusion every eight weeks as maintenance therapy with continuing improvement trends including IgM.

My husband has been diagnosed with an unusual variant of WM. I am not sure if you are connected to the International Waldenstrom Myeloma Foundation (IWMF), but they provide a wealth of resources to help you get your questions answered. Here is a link to just the patient resources page. https://iwmf.com/get-support/ I follow a facebook group, the Waldenstrom's Macroglobulinemia Support Group and there is also an internet based discussion group if you don't use FB. https://iwmf.com/iwmf-connect-and-online-discussion-forums/ Both groups respond to questions. The IWMF also hosts an annual patient forum which will be held from May 1 -3rd in Columbus Ohio which you can stream at home. https://iwmf.com/iwmf-educational-forum/ I hope this helps connect you to more helpful information.

@allessio77
I am no expert, but I understand that 90-95 percent of Waldenstrom’s patients have a mutation on the MDY88 gene. The remaining 5-10 percent do not - this is referred to as the “wild type.” I suspect that your doctor suspects that you do have the mutation, but you would need to ask him/her.

@dcuste
Thank you for sharing. Fortunately my hematologist is experienced with WM. She said she would normally start thinking about treatment when my IGM reaches 1000. She is considering doing it earlier due to my neuropathy.