1. < Blood Cancers & Disorders

Waldenstroms Macroglobulemia

Posted by katytx @katytx, Jan 25 6:04pm

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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suznsl | @suznsl | Mar 2 4:05pm
In reply to @adklg "I was diagnosed with WM early this past summer, after a bone marrow biopsy. My symptoms..." + (show)
@adklg

I was diagnosed with WM early this past summer, after a bone marrow biopsy. My symptoms were an enlarged spleen and results of lab work.
I was started on 5 months of chemo 2days once a month but after 3 months was told I had a mutant cell that was blocking its effectively. Was taken off and 4 weeks later started on “Brukinsa.” Felt wonderful on Brukinsa. No after effects, no fatigue and blood work was approaching normal. But cancer can be devious. I was diagnosed with a second cancer unrelated and now under chemo and radiation for colon cancer. They took me off of the Brukinsa. I am now on Capecitabine plus a twice infusion and 5 day a week radiation for 5 weeks. My life is filled with appointments, lab work and new name of drugs that I don’t care to know. Once I am them rough this and back to treating WM, I hope my old life will be back and I can spend a summer of hiking, biking and traveling.

Jump to this post

I am so sorry to hear you’re dealing with 2 cancers at the same time. God love ya’! WM is my 3rd cancer, and thankfully the first 2 are behind me. I pray you stay strong and can get through this recent diagnosis soon so you can get back to feeling better, too, and enjoy your summer.

REPLY
mrgreentea | @mrgreentea | Mar 3 7:00pm

Hi @katytx

Welcome. I went thru something similar early last year. I had some tender spots in my armpits, and a slightly enlarged spleen which did reduce my hunger a bit. They did a biopsy on a lymph node, a scan to measure my spleen size... along with a lot of other tests.

I know that there are several treatment options that might be recommended. For me, the doc thought starting with Zanubrutinib (Z) made the most sense. I've been on it for 8 months and all my blood numbers are back in range except for my IgA/M/G.

Several others here also have WM. There is also the IWMF group you could join if interested...

REPLY
2 replies
katytx | @katytx | Mar 4 8:28am
In reply to @mrgreentea "Hi @katytx Welcome. I went thru something similar early last year. I had some tender spots..." + (show)
@mrgreentea

Hi @katytx

Welcome. I went thru something similar early last year. I had some tender spots in my armpits, and a slightly enlarged spleen which did reduce my hunger a bit. They did a biopsy on a lymph node, a scan to measure my spleen size... along with a lot of other tests.

I know that there are several treatment options that might be recommended. For me, the doc thought starting with Zanubrutinib (Z) made the most sense. I've been on it for 8 months and all my blood numbers are back in range except for my IgA/M/G.

Several others here also have WM. There is also the IWMF group you could join if interested...

Jump to this post

Thank you so much for sharing---and wishing you improved blood numbers and good health!

REPLY
dcuste | @dcuste | Mar 5 7:45am
In reply to @mrgreentea "Hi @katytx Welcome. I went thru something similar early last year. I had some tender spots..." + (show)
@mrgreentea

Hi @katytx

Welcome. I went thru something similar early last year. I had some tender spots in my armpits, and a slightly enlarged spleen which did reduce my hunger a bit. They did a biopsy on a lymph node, a scan to measure my spleen size... along with a lot of other tests.

I know that there are several treatment options that might be recommended. For me, the doc thought starting with Zanubrutinib (Z) made the most sense. I've been on it for 8 months and all my blood numbers are back in range except for my IgA/M/G.

Several others here also have WM. There is also the IWMF group you could join if interested...

Jump to this post

If you don't mind me asking, what are your IgA/M/G numbers? I am considered a MGUS patient on the wait and watch program. My IgA is in the lower part of the normal range, my IgG has been a little on the low/normal side, and IgM and M-protein levels were rising at an alarming rate. Everything else normal.
The last three months, I've taken 6 g/day of curcumin with the belief that there was little downside and some potential benefits. It seems the IgM progression has slowed but my IgG dropped and I also recently read a very small MGUS study where the only person with IgM MGUS seemed to not do as well on curcumin. The others in the study seemed to benefit.
So yesterday I stopped taking the curcumin and now my plan is to ask about getting....
Bone marrow biopsy → Confirm B-cell involvement.
Serum viscosity test → Assess hyperviscosity risk.
Flow cytometry → Check for clonal B-cell population.
Discuss IVIG therapy → To address low IgG & infection risk.

IgM Levels (Normal: 40–230 mg/dL)
Mar 3, 2025: 1,611 mg/d
Nov 4, 2024: 1,608 mg/dL
May 13, 2024: 1,005 mg/dL
Oct 2, 2023: 774 mg/dL
Apr 19, 2023: 548 mg/dL

IgG Levels (Normal: 700–1,600 mg/dL)
Mar 3, 2025: 596 mg/dL (Low)
Nov 4, 2024: 640 mg/dL (Low)
May 13, 2024: 618 mg/dL (Low)
Oct 2, 2023: 693 mg/dL (Low)
Apr 19, 2023: 677 mg/dL (Low)

M-Protein (Normal 0.0 g/dL)
Mar 3, 2025 1.17g/dL
Nov 4, 2024 1.22g/dL
May 13, 2024 0.64g/dL
Oct 2, 2023 0.54g/dL
Apr 19, 2023 0.46g/dL

REPLY
1 reply
mrgreentea | @mrgreentea | Mar 5 8:24pm
In reply to @dcuste "If you don't mind me asking, what are your IgA/M/G numbers? I am considered a MGUS..." + (show)
@dcuste

If you don't mind me asking, what are your IgA/M/G numbers? I am considered a MGUS patient on the wait and watch program. My IgA is in the lower part of the normal range, my IgG has been a little on the low/normal side, and IgM and M-protein levels were rising at an alarming rate. Everything else normal.
The last three months, I've taken 6 g/day of curcumin with the belief that there was little downside and some potential benefits. It seems the IgM progression has slowed but my IgG dropped and I also recently read a very small MGUS study where the only person with IgM MGUS seemed to not do as well on curcumin. The others in the study seemed to benefit.
So yesterday I stopped taking the curcumin and now my plan is to ask about getting....
Bone marrow biopsy → Confirm B-cell involvement.
Serum viscosity test → Assess hyperviscosity risk.
Flow cytometry → Check for clonal B-cell population.
Discuss IVIG therapy → To address low IgG & infection risk.

IgM Levels (Normal: 40–230 mg/dL)
Mar 3, 2025: 1,611 mg/d
Nov 4, 2024: 1,608 mg/dL
May 13, 2024: 1,005 mg/dL
Oct 2, 2023: 774 mg/dL
Apr 19, 2023: 548 mg/dL

IgG Levels (Normal: 700–1,600 mg/dL)
Mar 3, 2025: 596 mg/dL (Low)
Nov 4, 2024: 640 mg/dL (Low)
May 13, 2024: 618 mg/dL (Low)
Oct 2, 2023: 693 mg/dL (Low)
Apr 19, 2023: 677 mg/dL (Low)

M-Protein (Normal 0.0 g/dL)
Mar 3, 2025 1.17g/dL
Nov 4, 2024 1.22g/dL
May 13, 2024 0.64g/dL
Oct 2, 2023 0.54g/dL
Apr 19, 2023 0.46g/dL

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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.

REPLY
1 reply
dcuste | @dcuste | Mar 5 9:53pm
In reply to @mrgreentea "Hi, you seemed to be well prepared! I'd be happy to take other things if there..." + (show)
@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.

Jump to this post

Thanks for providing your test data. I figured you had a good reason for having your handle. Unfortunately, I'm still drinking soda.
I was thinking that all MGUS cases were similar, now I'm realizing there is probably no point in even looking at fighting off SMM or MM and figure WM is more likely were I'm heading. I currently don't have any symptoms, but did find a bone lesion and AVN (bone head damage) on a recent pelvis MRI. They then had me consult with a bone surgeon. She pretty much told me call her back when I'm in unbearable groin pain and she'll do a hip replacement. Hang in there.

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