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

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

Blood Cancers & Disorders Support Group