1. < Blood Cancers & Disorders

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!

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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)
@newwaldenguy

I have been on Zanubrutinib monotherapy, same dosing since my diagnosis in July/Sept, 2022. I had 25% improvement after 2 weeks and 50% after 6 months. No side effects. Of course everyone can react differently, but I am grateful the medication has been working for me. Thanks to everyone that responded to my original post.

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

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1 reply
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)
@newwaldenguy

I have been on Zanubrutinib monotherapy, same dosing since my diagnosis in July/Sept, 2022. I had 25% improvement after 2 weeks and 50% after 6 months. No side effects. Of course everyone can react differently, but I am grateful the medication has been working for me. Thanks to everyone that responded to my original post.

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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...?

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1 reply
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)
@loribmt

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?

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Recently diagnosed with WM. Also have CLL.

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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)
@ejrquast

The following link will direct you to the 2022 Virtual Educational Forum - Multi-Omics for individuals by Dr. Treon: https://m.youtube.com/watch?v=yqns91T5Cmw


If you go to the Conclusion screen, you will see an easy to understand summary.
I happen o be an IWMF SG Leader and highly recommend the above mentioned resources. Also, the IWMF offers a Lifeline and you can contact patients for real life experiences, i.e. Zanubrutinib.
I took Ibrutinib, until it failed after just two years, but members respond well with fewer side effects with Zanubrutinib.
It is important to know your mutations prior to initiating any treatment.
Please feel free to contact me if you need assistance with IWMF resources.

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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

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jam5 | @jam5 | Apr 18, 2023
In reply to @ejrquast "The IWMF is a great resource. Thank you for sharing." + (show)
@ejrquast

The IWMF is a great resource. Thank you for sharing.

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Have you experienced any side effects and are you taking any other cardiac medications?

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ejrquast | @ejrquast | Apr 18, 2023
In reply to @jam5 "Has anyone taken Brukinsa, and can you share your experiences concerning side effects or how it..." + (show)
@jam5

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

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I am sorry you are experiencing multiple issues to balance with a new treatment. I have WM and have not had Brukinsa.

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1 reply
marymoreau1948 | @marymoreau1948 | Apr 18, 2023
In reply to @ejrquast "I am sorry you are experiencing multiple issues to balance with a new treatment. I have..." + (show)
@ejrquast

I am sorry you are experiencing multiple issues to balance with a new treatment. I have WM and have not had Brukinsa.

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What is your plan to treat WM? Do you live near a good hospital rather than a rural hospital as I do. I do not have confidence with the Dr's here. What genetic deletion do you have? IgM antibody?

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1 reply
jam5 | @jam5 | Apr 19, 2023
In reply to @marymoreau1948 "What is your plan to treat WM? Do you live near a good hospital rather than..." + (show)
@marymoreau1948

What is your plan to treat WM? Do you live near a good hospital rather than a rural hospital as I do. I do not have confidence with the Dr's here. What genetic deletion do you have? IgM antibody?

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Had Rituxan and Bendamustine for MZL ,and was discontinued after two cycles due tom intolerance.
Oncologist now suggesting Brukinsa( Zanabrutinib 320mg OD), but I am concerned with hemorrhage risk due to taking Xarelto20mg OD for persistent Afib with cardiac amyloidosis. Have MYD88 mutation

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newwaldenguy | @newwaldenguy | Apr 19, 2023
In reply to @marymoreau1948 "In what ways have you improved? What was your experience on Rituxin? Why was Bustimab not..." + (show)
@marymoreau1948

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

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I am on monotherapy, meaning "one drug" therapy. I did not get Rituxin or Bustimab. Both my initial MD and second opinion suggested monotherapy with zanubrutinib. This seems to be based on many factors. You need to ask your prescribing MD what are your options and "Why" he choose that treatment. In regards to improvement. My Hgb returned back to normal from mid 7's. My fatigue resolved. I basically felt "normal" within 3 weeks. My monoclonal IgM decrease about 50% within 6 months of therapy. I asked a lot of questions and I also did research. Previous posts provide good resources. Always look for the most recent information. The data seems to change fast. Best regards.

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newwaldenguy | @newwaldenguy | Apr 19, 2023
In reply to @jam5 "Are you also taking any other cardiac medications, such as blood thinners for atrial fibrillation, along..." + (show)
@jam5

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...?

Jump to this post

I am on no other meds, and have no cardiac conditions, so my treatment plan is simple. I have not had any concerning side effects. I bruise more easily. My risk for a-fib is low. People with cardiac disease or who are on medications for other chronic conditions may have more involved treatment plan.

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