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

I have edema in my legs and burning in my ankles. My peripheral neuropathy is getting...

https://connect.mayoclinic.org/comment/1478301/

Discussion: Does anyone have Amyloidosis as their primary condition?

Support Group: Blood Cancers & Disorders

Posted: Jan 9 2:12pm

@allessio77 I’ve had PN for several years with pain increasing. Diagnosed with myelofibrosis, I began Hydrea...

https://connect.mayoclinic.org/comment/1459116/

Discussion: Does anyone have neuropathy related to MGUS?

Support Group: Blood Cancers & Disorders

Posted: Dec 12, 2025

I also have MGus. I have had this for at least 15 years, but was just...

https://connect.mayoclinic.org/comment/1427189/

Discussion: Want to talk about Multiple Myeloma: Anyone else?

Support Group: Blood Cancers & Disorders

Posted: Oct 30, 2025

I am so sorry to hear that you are dealing with all of this. You did...

https://connect.mayoclinic.org/comment/1391566/

Discussion: WM / MZL

Support Group: Blood Cancers & Disorders

Posted: Sep 11, 2025

Sorry I also see a cardiologist and dermatologist because of possible side effects of Waldenstroms. Also...

https://connect.mayoclinic.org/comment/1375341/

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

Support Group: Blood Cancers & Disorders

Posted: Aug 20, 2025

@breathernow Hi Michael and welcome to Connect. Shoulder shrugging sure isn’t much of an answer when...

https://connect.mayoclinic.org/comment/1346952/

Discussion: Lymphoma doc at Mayo Rochester

Support Group: Blood Cancers & Disorders

Posted: Jul 13, 2025

Waldenstroms for goin on two years Imbruvica and prednisone with rituxin stripped working. Bad numbers up...

https://connect.mayoclinic.org/comment/1293434/

Discussion: Waldenstroms Macroglobulemia

Support Group: Blood Cancers & Disorders

Posted: Apr 30, 2025