Blood Cancers & Disorders: Discussions

@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

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

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

Hi joplin, I also had debilitating muscle spasms - especially at night which is caused by...

https://connect.mayoclinic.org/comment/1485701/

Discussion: Does anyone with Myelofibrosis suffer musscle spasm?

Support Group: Blood Cancers & Disorders

Posted: Jan 18 1:29pm

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

My insurance will not cover my Octigam This new year and I can’t find a foundation...

https://connect.mayoclinic.org/comment/1481133/

Discussion: Will my Ruxience and octigam infusion a work if I stop taking my oral

Support Group: Blood Cancers & Disorders

Posted: Jan 13 7:53am

I have IgG-secreting Lymphoplasmacytic Lymphoma which, although somewhat similar to Waldenstrom's, is even rarer than Waldenstrom's....

https://connect.mayoclinic.org/comment/1472529/

Discussion: Lymphoplasmacytic Lymphoma that is not WM?

Support Group: Blood Cancers & Disorders

Posted: Jan 1 9:58pm

@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

I'm new to the world of Waldenström's Macroglobulinemia - having been diagnosed last month. I'm on...

https://connect.mayoclinic.org/comment/1246861/

Discussion: Waldenstroms Macroglobulemia

Support Group: Blood Cancers & Disorders

Posted: Feb 27, 2025

Blood Cancers & Disorders Support Group