Waldenstrom Macroglobulinemia with MYD88-wild type

Good morning, @pices and welcome to Mayo Clinic Connect. We have some current members in our forum who also have WM and have discussions regarding their disease, symptoms and treatments. I’ve posted the sites for you and would like to introduce you to @patio29dadio and @ejrquast.

- Advice for Amyloidosis with Waldenstrom's macroglobulinemia https://connect.mayoclinic.org/discussion/advice-for-amyloidosis-with-waldenstroms-macroglobulinemia/

- Waldenstroms and amyloidosis https://connect.mayoclinic.org/discussion/waldenstroms-and-amyloidosis/

I’m sure you’ve already done some research on your condition…knowledge is power! But here are two more articles to check out if you’re interested.
https://www.mayoclinic.org/diseases-conditions/waldenstrom-macroglobulinemia/symptoms-causes/syc-20359967
https://www.cancer.org/cancer/waldenstrom-macroglobulinemia/about/what-is-wm.html
@ejrquast has a reply to another member with information on a physician at Mayo Clinic who specializes in the disease. https://connect.mayoclinic.org/comment/687248/

Have you thought about getting a second opinion for treatment? Has your hematologist discussed other options with you?

You may also want to check out the publications and resources in the website of the International Waldenstroms Macroglobulinemia Foundation (IWMF). See https://www.iwmf.com and https://iwmf.com/publications/.

Also, related medical journal articles about MYD88 Wild Type can be found at:

"Zanubrutinib for the treatment of MYD88 wild-type Waldenström macroglobulinemia: a substudy of the phase 3 ASPEN trial", Dimopolous, Castillo, et al, 2020
https://ashpublications.org/bloodadvances/article/4/23/6009/474409/Zanubrutinib-for-the-treatment-of-MYD88-wild-type
"Characteristics and Outcomes of Patients with Wild-Type WM", 2020, Gertz, Ansell, Paludo, et al (Mayo)
https://ascopubs.org/doi/10.1200/JCO.2020.38.15_suppl.8550

Is there a group / physician currently working on treatments for MYD88 - wild type in Walderstrom’s?
Zanubrutinib had good results in the ASPEN study but is there a group taking this further?

@pices - I too have WM with wild type MYD88. Did you find treatment options to manage your WM? Did you find a WM physician for our situation?

Has anyone been diagnosed with Myd88/
Waldenstrom Macroglobulinemia? (Sp x)
If so, could you offer how it's being treated medicine wise or other treatment. Thank you kindly? ❤️🙏

Hi @psue4, welcome. I moved your post to this existing discussion:
- Waldenstrom Macroglobulinemia with MYD88-wild type https://connect.mayoclinic.org/discussion/waldenstrom-macroglobulinemia-with-myd88-wild-type/

I did this so you can read previous helpful posts and connect other members like @pices @pldgsph @mariko572 and others.

Sue, what treatment is being considered in your situation?

Hello, it is my daughter. Previous told it was MGUS/MM, was treated with 3 chemo drugs. Now they feel it's WM/MYD88. She took a week break after 7 weeks of chemo and will go back on Tuesday for a new plan. I was just trying to get ahead of the plan to see what to expect. Thank you!

Any update on your daughter's revised treatment plan? How are YOU doing, @psue4?

Thank you Colleen for checking in on us. My daughter's treatment plans haven't changed. She sees her Dr only once a month and I wonder if he even reads her numbers after her weekly blood test. I really don't like to have those feelings toward him, but I do. She is reading all about WM and tries to get her concerns and questions in each week. She feels good and goes on with her life, but her kidney and blood numbers tell a different story. Today is another visit to doctors. I will be praying for some answers. Thank you!

Just an update on my Dr's last visit. I think I sounded off about the Dr's to fast, and I want to say I am sorry. As a mother you want the results to come in quick and sooner then later. As of 5.17 her last visit, the Dr's said he felt good about her progress. Kidney Dr, felt somewhat the same and adjusted her meds. 3 chemo drugs will continue. WM so far hasn't broke my daughter. She continues to eat healthy and exercises. I will always be here doing research and she is reaching out to support grps. Bless you all. Never give up!