Blood Cancers & Disorders Support Group

@carrnv42, welcome. I moved your question about zanubrutinib (Brukinsa) to this already existing discussion: - Waldenström...

https://connect.mayoclinic.org/comment/1451014/

Discussion: Waldenström macroglobulinemia (WM): Anyone on zanubrutinib (Brukinsa)?

Support Group: Blood Cancers & Disorders

Posted: Dec 1, 2025

@kabue9, I moved your question to the Blood Cancers & Disorders support group to this discussion:...

https://connect.mayoclinic.org/comment/1278128/

Discussion: Waldenström macroglobulinemia (WM): Anyone on zanubrutinib (Brukinsa)?

Support Group: Blood Cancers & Disorders

Posted: Apr 9, 2025

Hi @kabue9, I moved your question about WM and treatment with zanubrutinib (Brukinsa) to this relevant...

https://connect.mayoclinic.org/comment/1347391/

Discussion: Waldenström macroglobulinemia (WM): Anyone on zanubrutinib (Brukinsa)?

Support Group: Blood Cancers & Disorders

Posted: Jul 13, 2025

@allessio77 I am no expert, but I understand that 90-95 percent of Waldenstrom’s patients have a...

https://connect.mayoclinic.org/comment/1538225/

Discussion: Waldenstrom macroglobulinemia (WM): Deciding treatment options

Support Group: Blood Cancers & Disorders

Posted: Mar 29 6:00pm

@dcuste Read page 20 of https://www.nccn.org/patients/guidelines/content/PDF/waldenstrom-patient.pdf

https://connect.mayoclinic.org/comment/1539494/

Discussion: Waldenstrom macroglobulinemia (WM): Deciding treatment options

Support Group: Blood Cancers & Disorders

Posted: Mar 31 10:09am

Yesterday I was diagnosed with Waldenstrom's macroglobulinemia; I have the MYD88 wild type. My primary symptom...

https://connect.mayoclinic.org/comment/1537473/

Discussion: Waldenstrom macroglobulinemia (WM): Deciding treatment options

Support Group: Blood Cancers & Disorders

Posted: Mar 28 5:16pm

My husband has been diagnosed with an unusual variant of WM. I am not sure if...

https://connect.mayoclinic.org/comment/1538064/

Discussion: Waldenstrom macroglobulinemia (WM): Deciding treatment options

Support Group: Blood Cancers & Disorders

Posted: Mar 29 1:21pm

I am 73 and am positive for Waldenstrom’s Macroglobulinemia, MYD88 positive, CXCR4 negative. In addition, I...

https://connect.mayoclinic.org/comment/1518410/

Discussion: Anyone diagnosed with both myelofibrosis and Waldenstroms lymphoma?

Support Group: Blood Cancers & Disorders

Posted: Mar 3 8:55am

I had an iron infusion (ordered by my GP) in August after months of taking oral...

https://connect.mayoclinic.org/comment/1493895/

Discussion: Has anyone with MGUS had an iron transfusion?

Support Group: Blood Cancers & Disorders

Posted: Jan 30 6:08am

Hi @glueski I've been diagnosed with Waldenström's too. I've been on Brukinsa for just over a...

https://connect.mayoclinic.org/comment/1525895/

Discussion: How are you managing Brukinsa side effects?

Support Group: Blood Cancers & Disorders

Posted: Mar 13 10:02am

@loribmt I have been diagnosed with Waldenstroms

https://connect.mayoclinic.org/comment/1525337/

Discussion: How are you managing Brukinsa side effects?

Support Group: Blood Cancers & Disorders

Posted: Mar 12 12:01pm

Hi @glueski There are several members here who also have been diagnosed with Waldenstroms Macroglobulemia. A...

https://connect.mayoclinic.org/comment/1526644/

Discussion: How are you managing Brukinsa side effects?

Support Group: Blood Cancers & Disorders

Posted: Mar 14 10:22am

been on ruxience brukinsa, octigam and steroids for thee years. will i ever be free of...

https://connect.mayoclinic.org/comment/1527329/

Discussion: How are you managing Brukinsa side effects?

Support Group: Blood Cancers & Disorders

Posted: Mar 15 9:44am

Since everyone responds differently, I highly recommend joining the IWMF (International Waldenstrom’s Macroglobulinemia Foundation) - either...

https://connect.mayoclinic.org/comment/1074361/

Discussion: Waldenström's Macroglobulinemia

Support Group: Blood Cancers & Disorders

Posted: May 25, 2024

@vgdmayo Thanks to @loribmt for tagging me in this conversation. OHSU, going to their website, gave...

https://connect.mayoclinic.org/comment/1042904/

Discussion: Second Opinions: How do I get one at Mayo Clinic out-of state?

Support Group: Blood Cancers & Disorders

Posted: Mar 30, 2024

Hi @artmulh, I look forward to learning more about you. Having attended two of the IWMF...

https://connect.mayoclinic.org/comment/1026606/

Discussion: Waldenström's Macroglobulinemia

Support Group: Blood Cancers & Disorders

Posted: Mar 3, 2024

@careysuzi Welcome to Mayo Clinic Connect! To get more information about your new diagnosis, I recommend...

https://connect.mayoclinic.org/comment/996792/

Discussion: Does anyone else have MGUS?

Support Group: Blood Cancers & Disorders

Posted: Jan 13, 2024

I am an active 75 year old and I was diagnosed with anemia, than MGUS 6...

https://connect.mayoclinic.org/comment/996268/

Discussion: Does anyone else have MGUS?

Support Group: Blood Cancers & Disorders

Posted: Jan 12, 2024

Hi Colleen, I see that you referenced me as “Watch & See” for Waldenstrom disease. I...

https://connect.mayoclinic.org/comment/964298/

Discussion: Waldenstrom macroglobulinemia: What to expect during watch & wait?

Support Group: Blood Cancers & Disorders

Posted: Nov 13, 2023

Hi @laurinea, I understand what you are going through. My neuropathy started 18 months ago and...

https://connect.mayoclinic.org/comment/945494/

Discussion: Does anyone else have MGUS?

Support Group: Blood Cancers & Disorders

Posted: Oct 10, 2023