1. < Blood Cancers & Disorders

Waldenstrom macroglobulinemia (WM): Deciding treatment options

Posted by weissmntc @weissmntc, Dec 16, 2023

I was diagnosed this week with WM. No symptoms except persistent anemia and periodic breathlessness. I had a bone marrow biopsy which confirmed IgM, free kappa chain levels etc. Treatment likely to begin in January. Offered 2 treatment choices (chemo for 6 months (benda-R) or zanutrinib orally “forever”). Looking for anyone’s firsthand experience in how you made the decision of which treatment to go for.

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

weissmntc | @weissmntc | Dec 29, 2023
In reply to @rich1964 "Hi my name is William Kelly I don’t have any answers but I can tell you..." + (show)
@rich1964

Hi my name is William Kelly I don’t have any answers but I can tell you my story.I was 45 in 2009 when I was diagnosed with Waldenstrom. It was through a blood test after I had shortness of breath. Then a bone marrow biopsy to confirm the bloodwork. It was a very scary time I didn’t know what to expect. I went through a lot of anxiety not knowing what was next. My first chemo was cytoxon oral. And rituxumab intervenes. After my treatment I went into remission for 14 years just yearly dr appt. Then my igm jumped up to 5500 very quickly. In 2022 I had another round of chemo with bendka rituxamab. Bendeka for me was a miracle drug it put all my blood counts in the normal range. And here I am still kicking. I never let this cancer define who I am. Just a bump in the road that the Good Lord put there for a reason. There are a lot of advancements in drugs to treat this cancer so hang in there and keep your head held high. God loves you and you will get through it.

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Thank you very much! I know these treatments are/can be very effective. Since I originally posted, I’ve found out I have both genetic mutations (MYD88 and CXC4) so it appears that the Benda/R course is the most effective. Hopefully by June I’ll be in remission too. Happy new year to you!!

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nancyraskauskas | @nancyraskauskas | Dec 30, 2023
In reply to @rich1964 "Hi my name is William Kelly I don’t have any answers but I can tell you..." + (show)
@rich1964

Hi my name is William Kelly I don’t have any answers but I can tell you my story.I was 45 in 2009 when I was diagnosed with Waldenstrom. It was through a blood test after I had shortness of breath. Then a bone marrow biopsy to confirm the bloodwork. It was a very scary time I didn’t know what to expect. I went through a lot of anxiety not knowing what was next. My first chemo was cytoxon oral. And rituxumab intervenes. After my treatment I went into remission for 14 years just yearly dr appt. Then my igm jumped up to 5500 very quickly. In 2022 I had another round of chemo with bendka rituxamab. Bendeka for me was a miracle drug it put all my blood counts in the normal range. And here I am still kicking. I never let this cancer define who I am. Just a bump in the road that the Good Lord put there for a reason. There are a lot of advancements in drugs to treat this cancer so hang in there and keep your head held high. God loves you and you will get through it.

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Thank you for your encouraging words. Your beginning story sounds like mine. My recent bendeka(bendamustine) and rituximab treatment saw a rise in my hemoglobin to a close to normal level. My white blood cells are improved but platelets dropped but not too drastically. I am keeping faith that I’m on the right path . My best wishes to you in the New Year.

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cpu | @cpu | May 17 6:10pm

Anyone in this group with this disease?

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4 replies
charlotte44 | @charlotte44 | May 17 7:22pm
In reply to @cpu "Anyone in this group with this disease?" + (show)
@cpu

Anyone in this group with this disease?

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I do not have this, but I have looked into it a lot. I have so many symptoms. Can you tell more about yours?

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Moderator
Colleen Young, Connect Director | @colleenyoung | May 18 12:20pm
In reply to @cpu "Anyone in this group with this disease?" + (show)
@cpu

Anyone in this group with this disease?

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Welcome, @cpu. I moved your question about Waldenstrom macroglobulinemia (WM) to this existing discussion:

- Waldenstrom macroglobulinemia (WM): Deciding treatment options
https://connect.mayoclinic.org/discussion/wm-treatment-options/
I did this so you can read previous posts and connect easily with other WM members like @ejrquast @aann @nsh @weissmntc and others with a similar diagnosis.
You might appreciate this post by @loribmt in particular https://connect.mayoclinic.org/comment/981542/

If you use the group search, you can find additional discussions as well.

@cpu, is this a new diagnosis for you?

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1 reply
aann | @aann | May 18 12:46pm
In reply to @cpu "Anyone in this group with this disease?" + (show)
@cpu

Anyone in this group with this disease?

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My husband was diagnosed three years ago though I believe he had it for several years prior. After three different failed treatments, he was put on Brukinsa as a last resort before chemo, and that is working!

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cpu | @cpu | May 18 3:01pm
In reply to @loribmt "Welcome to Connect, @weissmntc. You’ve just been handed a new diagnosis of Waldenstrom Macroglobulinemia. I’m sure..." + (show)
@loribmt

Welcome to Connect, @weissmntc. You’ve just been handed a new diagnosis of Waldenstrom Macroglobulinemia. I’m sure you have a ton of questions about this blood condition along with the new treatment you’re about to begin. We have a number of members in the forum who have also been diagnosed with WM.

This discussion might be helpful with @ejrquast @aann @nsh regarding
Waldenstrom macroglobulinemia: What can I expect with chemo?
https://connect.mayoclinic.org/discussion/waldenstrom-macroglobulinemia-recently-diagnosed/
Another current discussion, though it dates back to 2012, is still active. You can reverse the order of discussions in the little option box under the opening statement:
Waldenström's Macroglobulinemia
https://connect.mayoclinic.org/discussion/waldenstrms-macroglobulinemia/
If you’re interested in learning more about your condition I’ve found a few links for you regarding WM.
https://www.mayoclinic.org/diseases-conditions/waldenstrom-macroglobulinemia/symptoms-causes/syc-20359967
~~~

International Waldenstrom's Macroglobulinema Foundation http://www.IWMF.com
~~~
https://www.verywellhealth.com/what-is-waldenstrom-macroglobulinemia-2252362
~~~
https://www.lls.org/sites/default/files/2021-07/FS20_Waldenstrom_FactSheet_2021.pdf
Brukinsa and Rituximab is a pretty standard combination of treatments for many types of blood cancers/conditions. It’s not just for WM. There are many members in our Blood Cancer Support group (such as @badnewsforme who shared their experience in the comment above) who have taken this course of treatment. Here’s one of the discussions that will be relevant for you:

Rituximab & Bendamustine
https://connect.mayoclinic.org/discussion/treatment-for-mzl/
Hopefully I haven’t overwhelmed you with information. But knowledge is power and it’s often helpful to learn as much as you can so you are able to make informed decisions about treatment.

Were you having symptoms that lead you to finding the diagnosis or was this found in a routine physical?

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Thank you. This information is very helpful as I begin the journey.

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cpu | @cpu | May 18 3:13pm
In reply to @colleenyoung "Welcome, @cpu. I moved your question about Waldenstrom macroglobulinemia (WM) to this existing discussion: - Waldenstrom..." + (show)
@colleenyoung

Welcome, @cpu. I moved your question about Waldenstrom macroglobulinemia (WM) to this existing discussion:

- Waldenstrom macroglobulinemia (WM): Deciding treatment options
https://connect.mayoclinic.org/discussion/wm-treatment-options/
I did this so you can read previous posts and connect easily with other WM members like @ejrquast @aann @nsh @weissmntc and others with a similar diagnosis.
You might appreciate this post by @loribmt in particular https://connect.mayoclinic.org/comment/981542/

If you use the group search, you can find additional discussions as well.

@cpu, is this a new diagnosis for you?

Jump to this post

Yes, it is new and more test results are pending. Thank you for your information.

REPLY
weissmntc | @weissmntc | May 25 10:43am
In reply to @cpu "Anyone in this group with this disease?" + (show)
@cpu

Anyone in this group with this disease?

Jump to this post

I was diagnosed with WM in Dec 2023. I have completed 5 rounds of B-R and numbers are improving. One more to go in June.

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