Waldenström's Macroglobulinemia

Posted by Yellersam @yellersam, Jan 31, 2012

Hi, my dad has recently been diagnosed with WM. First things first; he told me 90% of his bone marrow was infected with the cancer. How severe would that be compared to other patients? He also falls into the high risk category. Has anybody here with WM fall into the high risk category as well?
Much thanks to all!

Interested in more discussions like this? Go to the Blood Cancers & Disorders Support Group.

jam5 | @jam5 | Apr 18, 2023

In reply to @ejrquast "The following link will direct you to the 2022 Virtual Educational Forum - Multi-Omics for individuals..." + (show)

For a patient with MZL also with wtttr and AL cardiac amyloidosis in persistent Afib and taking Xarelto 20mg po OD, should there be a consideration for dose reduction of Xarelto 20 mg if recommended to take Brukinsa (Zanabrutinib 320 mg po OD)? Should the patient not take it?
Does the Brukinsa place the patient at increased risk of hemorrhage and stroke?
Previous Rituxan and Bendamustine infusions were discontinued after two cycles due to intolerability

marymoreau1948 | @marymoreau1948 | Apr 18, 2023

In reply to @loribmt "Hello @marymoreau1948, Welcome to Mayo Connect. There are several other members in our support group who..." + (show)

Recently diagnosed with WM. Also have CLL.

jam5 | @jam5 | Apr 18, 2023

In reply to @newwaldenguy "I have been on Zanubrutinib monotherapy, same dosing since my diagnosis in July/Sept, 2022. I had..." + (show)

Are you also taking any other cardiac medications, such as blood thinners for atrial fibrillation, along with Zanabrutinib ( Brukinsa)?
Have you noticed any side effects- fatigue, palpitations GI etc...?

marymoreau1948 | @marymoreau1948 | Apr 18, 2023

In reply to @newwaldenguy "I have been on Zanubrutinib monotherapy, same dosing since my diagnosis in July/Sept, 2022. I had..." + (show)

In what ways have you improved? What was your experience on Rituxin? Why was Bustimab not included? Thanks.

Lori, Volunteer Mentor | @loribmt | Apr 18, 2023

In reply to @jam5 "Has anyone taken Brukinsa, and can you share your experiences concerning side effects or how it..." + (show)

Brukinsa is also known as Zanubrutinib. There are few members in the forum who have experience with this medication and most are in this discussion about Waldenström's Macroglobulinemia.

You’ll have to scroll back a little but here are the comments I’ve found with @pldgsph @newwaldenguy and @sidm. Below, I’ve provided the direct links that reference Brukinsa/Zanubrutinib
https://connect.mayoclinic.org/comment/746825/
~~~~
https://connect.mayoclinic.org/comment/746430/
~~~~~
https://connect.mayoclinic.org/discussion/waldenstrms-macroglobulinemia/
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https://connect.mayoclinic.org/comment/830461/
~~~~

And this from @sunfishgirl who was being switched to the medication a month ago.
~Want to connect with others with Splenic B cell Marginal Zone Lymphoma
https://connect.mayoclinic.org/comment/799826/
From the comments I read, it appears that this is a well tolerated drug with some positive results. I know you and your husband have reservations about starting this new medication because of Afib and other complications. Has this been run past his cardiologist?

jam5 | @jam5 | Apr 18, 2023

In reply to @loribmt "Hello @marymoreau1948, Welcome to Mayo Connect. There are several other members in our support group who..." + (show)

Has anyone taken Brukinsa, and can you share your experiences concerning side effects or how it has been tolerated?

Lori, Volunteer Mentor | @loribmt | Apr 17, 2023

In reply to @marymoreau1948 "Does Awaldstron's Lymphoma progress with more genetic mutations and protein antibodies?" + (show)

Hello @marymoreau1948, Welcome to Mayo Connect. There are several other members in our support group who have also been diagnosed with Waldstrom’s macroglobulinemia. Here’s a link to a current discussion with members @ejrquast @bob194903 @belcar45 @joannecathcart and others:
https://connect.mayoclinic.org/discussion/waldenstrms-macroglobulinemia/
~
@ejrquast has also given an link to an educational opportunity for WM patients.
https://connect.mayoclinic.org/comment/843970/
Were you just recently diagnosed with this condition? Are you in a treatment plan?

marymoreau1948 | @marymoreau1948 | Apr 16, 2023

Does Awaldstron's Lymphoma progress with more genetic mutations and protein antibodies?

bob194903 | @bob194903 | Apr 16, 2023

Low-risk myself, recently diagnosed. Sorry no answers for you but here with you any way I can.

ejrquast | @ejrquast | Apr 16, 2023

The I.W.M.F. (International Waldenstrom’s Macroglobulinemia Foundation) if having an educational Forum, both in person and virtually, this Thursday-Sunday, April 21-23, but you are required to register to join or attend in person. The following is a uTube link for the IWMF President speaking briefly about the Forum: https://m.youtube.com/watch
There is NO cost to virtually attend this week’s Forum. The international speakers are all WM specialists, including three from Mayo Clunic. You are able to watch sessions you are interested in.
I encourage any WM patients and/or caregivers to sign up for this extremely informative educational forum.

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