Blood Cancers & Disorders Support Group

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Comments (123)

@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

I too have Waldenstrom macrogrobulinemia. Six years ago they thought I had NHL, BUT, Now after...

https://connect.mayoclinic.org/comment/815765/

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

Support Group: Blood Cancers & Disorders

Posted: Feb 22, 2023

Welcome to Mayo Connect. I was diagnosed with WM in 2014. I am an IWMF (International...

https://connect.mayoclinic.org/comment/624405/

Discussion: Waldenstroms and amyloidosis

Support Group: Blood Cancers & Disorders

Posted: Aug 8, 2021

Hi Mike, I can appreciate your thoughts on whether the vaccinations had anything to do with...

https://connect.mayoclinic.org/comment/923509/

Discussion: Should Waldentrom's Patients Get Flu Shots?

Support Group: Blood Cancers & Disorders

Posted: Sep 3, 2023

@vasu11, you may also be interested in these related discussions: - Is anyone taking Ibrutinib (Imbruvica)?...

https://connect.mayoclinic.org/comment/909770/

Discussion: With Waldenstrom, what side effects did you have with ibrutinib?

Support Group: Blood Cancers & Disorders

Posted: Aug 8, 2023

Hi @nandita9009 The best way to initiate an appointment request would be to go directly to...

https://connect.mayoclinic.org/comment/891236/

Discussion: Waldenström's Macroglobulinemia

Support Group: Blood Cancers & Disorders

Posted: Jul 6, 2023

Brukinsa is also known as Zanubrutinib. There are few members in the forum who have experience...

https://connect.mayoclinic.org/comment/845063/

Discussion: Waldenström's Macroglobulinemia

Support Group: Blood Cancers & Disorders

Posted: Apr 18, 2023

Hello @marymoreau1948, Welcome to Mayo Connect. There are several other members in our support group who...

https://connect.mayoclinic.org/comment/844573/

Discussion: Waldenström's Macroglobulinemia

Support Group: Blood Cancers & Disorders

Posted: Apr 17, 2023

Thank you for reaching out for help. No doubt you are overwhelmed right now. Mayo Clinic...

https://connect.mayoclinic.org/comment/828678/

Discussion: Waldenström's Macroglobulinemia

Support Group: Blood Cancers & Disorders

Posted: Mar 19, 2023

I was diagnosed with MGUS over a year ago while my primary doctor was testing me...

https://connect.mayoclinic.org/comment/1288052/

Discussion: M-Spike and Lambda light chain increasing while KL ratio decreasing

Support Group: Blood Cancers & Disorders

Posted: Apr 23, 2025

I was diagnosed in 2023. Bone Marrow biopsy showed MYD88 gene mutation thus diagnosed with Waldenstrom’s...

https://connect.mayoclinic.org/comment/1186920/

Discussion: Does anyone else have MGUS?

Support Group: Blood Cancers & Disorders

Posted: Dec 8, 2024

I as well have mGus and also was told that an extremely small percentage of mGus...

https://connect.mayoclinic.org/comment/1168679/

Discussion: Does plant-based eating lower chances of MGUS progressing to myeloma?

Support Group: Blood Cancers & Disorders

Posted: Nov 5, 2024

Thank you for reaching out for support. WM is a very rare blood cancer. While it...

https://connect.mayoclinic.org/comment/812866/

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

Support Group: Blood Cancers & Disorders

Posted: Feb 17, 2023

I too have shortness of breath which is apparently attributable to low hemoglobin (I have Waldenstrom's...

https://connect.mayoclinic.org/comment/791282/

Discussion: Any suggestions for chronic shortness of breath with PV?

Support Group: Blood Cancers & Disorders

Posted: Jan 1, 2023

I'm sorry to hear of your diagnosis. Though I'm still watching and waiting, I find the...

https://connect.mayoclinic.org/comment/787689/

Discussion: Waldenstrom macroglobulinemia: What can I expect with chemo?

Support Group: Blood Cancers & Disorders

Posted: Dec 22, 2022

I am sorry to read you are now experiencing WM symptoms. I recommend that you contact...

https://connect.mayoclinic.org/comment/776531/

Discussion: Waldenström's Macroglobulinemia

Support Group: Blood Cancers & Disorders

Posted: Nov 23, 2022

I’m between a rock and a hard place as far as being diagnosed with WM. The...

https://connect.mayoclinic.org/comment/750837/

Discussion: Waldenström's Macroglobulinemia

Support Group: Blood Cancers & Disorders

Posted: Sep 17, 2022

@Colleneyoung and hnipper, your posts have been informative and helpful. Collene, as you know from my...

https://connect.mayoclinic.org/comment/734282/

Discussion: Hodgkin Lymphoma was stable, now new activity

Support Group: Blood Cancers & Disorders

Posted: Aug 5, 2022

Reaching out for those with WM experience is extremely helpful for a rare lymphoma. I was...

https://connect.mayoclinic.org/comment/691691/

Discussion: Waldenstroms and amyloidosis

Support Group: Blood Cancers & Disorders

Posted: Mar 21, 2022

Hi @patio29dadio, welcome. You're facing some big decisions. Allow me to bring in fellow members who...

https://connect.mayoclinic.org/comment/687154/

Discussion: Advice for Amyloidosis with Waldenstrom's macroglobulinemia

Support Group: Blood Cancers & Disorders

Posted: Mar 7, 2022