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Waldenstroms Macroglobulemia

Posted by katytx @katytx, Jan 25, 2025

Hello---I have been a watch and wait MGUS patient and now my oncologist believes I have WM due to lab tests, spleen, etc. Had a bone marrow biopsy last week along with CT Scans as she found swollen/enlarged lymph nodes in my neck, chest, groin.
Still waiting for all the reports and the gene typing before my appointment next week, but have some questions for those of you who may know more that can help me. The CT scans do not show masses but she felt them plus my neck, under arm and groin are tender and painful. Has anyone else experienced this? Also, still no night sweats but have lost weight and no appetite. I know she will answer the questions, but just trying to understand more. Thanks ---appreciate any comments or your experience.

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catartist | @catartist | Apr 30, 2025
In reply to @mrgreentea "Hi, you seemed to be well prepared! I'd be happy to take other things if there..." + (show)
Profile picture for mrgreentea @mrgreentea

Hi, you seemed to be well prepared! I'd be happy to take other things if there is any encouraging evidence. (I started drinking green tea a long time ago to ween myself off pop.)

My numbers in Nov24 were
IgG 317
IgM 2220
IgA 27

In Feb24 they were
IgG 431
IgM 2320
IgA 18

My M-protein MK in Nov24 was 1.372. It was 1.33 in Apr24. My M-protein Isotype is negative (abnormal). I don't know anything about this indicator... looks like I need to learn more. Thanks for pointing this out.

I believe that my doc would not consider supporting IgIV until I start having frequent infections.

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I did have frequent infections- and my monthly I V for 1:30 years has made me Sosi much better generally. I can tell when I need another! Subtle- I wish we’d known about my need years ago. Feel many things would have been better with my various co- mobilitiies!(78)

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zeedee1 | @zeedee1 | Apr 30, 2025
In reply to @ranchgal4sure "Hi Lori, Many thanks for your welcoming message 🙂 I'll definitely check out the links including..." + (show)
Profile picture for ranchgal4sure @ranchgal4sure

Hi Lori,
Many thanks for your welcoming message 🙂
I'll definitely check out the links including international site for WM.
My first symptoms were fairly sporadic and mild (dyspnea and presyncope). Yet, I was concerned so asked my PCP to order bloodwork. After the idiopathic anemia diagnosis I was referred to a Hemotologist Oncologist who ordered numerous tests - including bone marrow biopsy which confirmed WM.
I'll look forward to following others and sharing as my journey continues 🏞

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Waldenstroms for goin on two years Imbruvica and prednisone with rituxin stripped working. Bad numbers up good ones down and now severe anemia. Added 10 dexamothosone pills once a week that keep me up for days and I g infusions and concerning
Rituxin and added brukinsa. Doc thinks I have had this much before diagnosis. Due to many unexplained health issue inculdimg thyroid cancer many years again. Anything souls familiar? Am I I. For worse side effects? Is it worth it? I do have faith I. My doctor and I know he is optimistic

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marcwall | @marcwall | 6 days ago
In reply to @zeedee1 "Waldenstroms for goin on two years Imbruvica and prednisone with rituxin stripped working. Bad numbers up..." + (show)
Profile picture for zeedee1 @zeedee1

Waldenstroms for goin on two years Imbruvica and prednisone with rituxin stripped working. Bad numbers up good ones down and now severe anemia. Added 10 dexamothosone pills once a week that keep me up for days and I g infusions and concerning
Rituxin and added brukinsa. Doc thinks I have had this much before diagnosis. Due to many unexplained health issue inculdimg thyroid cancer many years again. Anything souls familiar? Am I I. For worse side effects? Is it worth it? I do have faith I. My doctor and I know he is optimistic

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@zeedee1
So sorry to hear about your complications, Zee Dee. But, without knowing your IgM and other "numbers" and symptomology, it's hard to offer suggestions. If you have a CXCR4 mutation type (S338X in particular), which 40% of WM patients have, you are unlikely to respond well to a BTK Inhibitor like Imbruvica or Brukinsa. Prednisone is rarely prescribed for WM (especially long-term), and ususally are used before a major chemo approach (pre-medication) to prevent an infusion reaction. Taking steroids for two years is highly unusual. It can cause weight gain, type-2 diabetes, bone issues, and hypertension. Brukinsa alone is generally well-tolerated. Depending upon your underlying markers Rituxan can be a good fit often teamed up with Bendamustine in the BR protocol if you have a high tumor burden (high IgM loads).

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