Waldenstrom macroglobulinemia (WM) 3 years: Might I be in remission?

Posted by zeedee1 @zeedee1, May 16 11:16am

I think
My dr finally found the right formula. Brukinsa, Ruxience infusions, omigam and dexamethodone. Igms finally going down. Iga non existent but other immunoglobulins much better. Does this mean I am going into remission? I see him next week but feeling a lot better🤞

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Profile picture for kjberend12 @kjberend12

I was diagnosed 13 years ago. Only real sympton has been losing 75 pounds without trying..lately numbers are up and horrible neuropathy in my feet.. no treatments yet.and I trust my oncologist implicitly. Hope this sheds some light and hope for some of you.

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Hi @kjberend12. Losing 75 pounds without trying is a substantial number. Was that your first symptom of WM? Has the weight loss continued or has it leveled out?

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Profile picture for breathernow @breathernow

Thanks for your reply, am in similar situation, diagnosed 3yrs ago, was informed that I have had waldenstrum for last 10yrs, no treatment yet, just being monitored, thks for your reply,all the best for you. Mike

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Good luck Mike...

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@zeedee1, any update after meeting with your doctor?

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Profile picture for Lori, Volunteer Mentor @loribmt

Hi @kjberend12. Losing 75 pounds without trying is a substantial number. Was that your first symptom of WM? Has the weight loss continued or has it leveled out?

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Still losing a little weight but kinda leveling out.

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Profile picture for Colleen Young, Connect Director @colleenyoung

@zeedee1, any update after meeting with your doctor?

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He thinks we are on right formula for now but no real remission expected. Continuing with both infusion and meds. A little disappointed but I do have faith in him yesterdays Ruxience side effects were really bad. Seem they get a little worse with each infusion. Thanks for caring .

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Profile picture for dcuste @dcuste

I'm on a Wait and Watch with IgM MGUS. My IgM are about half of yours. For my next biannual testing, My Oncologist/Hematologist has agreed to get the data to run this risk calculator......
https://awmrisk.com/
Because of the people involved in making the calculator, she thinks it is accurate. She has always assumed the risk categories were not standardized to a specific set of values. I'm thinking she might be wrong and this may be the standard is for IgM MGUS.

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It's so frustrating to not have specific information especially on the Wait and Watch MGUS.
I was the same until diagnosed with WM after all the labs, testing, bone marrow biopsies, and genetic testing for MYD88. I am fortunate that I don't have any symptoms and so I am considered Smoldering WM...again Wait and Watch (which I am totally okay with!! ).
My Oncologist also uses the Dana Farber risk calculator and I'm curious if others have had the same, and did it align to when you started having symptoms and treatment?
I know everyone is unique and this is just a tool and am curious to your responses? Not looking for a "doomsday" clock, just more interested in the analytic responses. Every day is a gift! Thanks.

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Totally agreee. Everyday is a gift! Could be so much worse 🙏

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Profile picture for katytx @katytx

It's so frustrating to not have specific information especially on the Wait and Watch MGUS.
I was the same until diagnosed with WM after all the labs, testing, bone marrow biopsies, and genetic testing for MYD88. I am fortunate that I don't have any symptoms and so I am considered Smoldering WM...again Wait and Watch (which I am totally okay with!! ).
My Oncologist also uses the Dana Farber risk calculator and I'm curious if others have had the same, and did it align to when you started having symptoms and treatment?
I know everyone is unique and this is just a tool and am curious to your responses? Not looking for a "doomsday" clock, just more interested in the analytic responses. Every day is a gift! Thanks.

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It's good to know I'm not alone in this IgM MGUS journey. I have so many questions. My impression is my Oncologist/Hematologist is just using the HMO playbook. Fortunately, she is willing to play along with my requests for tests like LDH & MRI. My IgG levels are low, Free light chains seem normal. I don't know if my IgM is Kappa or Lambda and I don't know if it makes a difference anyway.
The first time we talked, she seemed to promote a BMB, but I declined at the time mainly because at that time I was still hoping this whole situation would progress very slowly. Unfortunately, my IgM levels have been rising exponentially. In a few months, I'll get all the testing done again including the BMB and then put the results into the Dana Farber calculator and know which Risk Group I'm in.
Depending how those tests go, I may then ask for FISH (MYD88 L265P), maybe Flow Cytometry to identify clonal markers (CD19, CD20, CD5, CD10, CD38, CD138, etc.) on abnormal B-cells/plasma cells.
I don't think she will be happy about doing more tests. The MRI I talked her into, didn't find any lesions but did find an unrelated AVN condition affecting my hips and that resulted being assigned to an orthopedic surgeon. Who knows what these tests will find.
I'll let you know how my testing goes. Let me know if you have any questions and how your journey progresses.

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Profile picture for dcuste @dcuste

It's good to know I'm not alone in this IgM MGUS journey. I have so many questions. My impression is my Oncologist/Hematologist is just using the HMO playbook. Fortunately, she is willing to play along with my requests for tests like LDH & MRI. My IgG levels are low, Free light chains seem normal. I don't know if my IgM is Kappa or Lambda and I don't know if it makes a difference anyway.
The first time we talked, she seemed to promote a BMB, but I declined at the time mainly because at that time I was still hoping this whole situation would progress very slowly. Unfortunately, my IgM levels have been rising exponentially. In a few months, I'll get all the testing done again including the BMB and then put the results into the Dana Farber calculator and know which Risk Group I'm in.
Depending how those tests go, I may then ask for FISH (MYD88 L265P), maybe Flow Cytometry to identify clonal markers (CD19, CD20, CD5, CD10, CD38, CD138, etc.) on abnormal B-cells/plasma cells.
I don't think she will be happy about doing more tests. The MRI I talked her into, didn't find any lesions but did find an unrelated AVN condition affecting my hips and that resulted being assigned to an orthopedic surgeon. Who knows what these tests will find.
I'll let you know how my testing goes. Let me know if you have any questions and how your journey progresses.

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I’m on Brukinsa a half dose and it is bring my IGM down pretty notably.

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Profile picture for Lori, Volunteer Mentor @loribmt

Hi @kjberend12. Losing 75 pounds without trying is a substantial number. Was that your first symptom of WM? Has the weight loss continued or has it leveled out?

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I haven’t lost any weight. I gained weight. I am on Brukinsa and jt is known for weight gain. Just my luck.

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