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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champ9810 | @champ9810 | Jul 14, 2023
In reply to @drwill "Thank you so much for your in-depth response. Great information and much appreciated. I doing well...." + (show)
@drwill

Thank you so much for your in-depth response. Great information and much appreciated.

I doing well. I had the first infusion with only the Bendamustine. I had some slight issues mainly due to hydration. My next session will include the Rituximab. I’m told it’s a much longer process because it has to be administered slowly. Looking forward to it.

Thanks 🙏🏾

Jump to this post

I’m my first Rituximab infusion as well. I’m hoping for no or minimal side effects. Thanks for your update and all the best with the rest of yours as well.

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3 replies
marymoreau1948 | @marymoreau1948 | Jul 18, 2023
In reply to @champ9810 "I’m my first Rituximab infusion as well. I’m hoping for no or minimal side effects. Thanks..." + (show)
@champ9810

I’m my first Rituximab infusion as well. I’m hoping for no or minimal side effects. Thanks for your update and all the best with the rest of yours as well.

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Have you had any side effects yet?

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2 replies
sandy19643 | @sandy19643 | Jul 18, 2023
In reply to @sstouten "I was recently diagnosed with Waldenstrom Macroglobulinemia. My hematologist/oncologist will see me every 6 months for..." + (show)
@sstouten

I was recently diagnosed with Waldenstrom Macroglobulinemia. My hematologist/oncologist will see me every 6 months for labs and office appointment. Till then no treatments. Just watching and waiting. I would like to hear from others with this diagnosis.

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I was diagnosed with WM almost 3 years ago. I also see my oncologist (he just graduated me to once a year labs). Also just watching and waiting.

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drwill | @drwill | Jul 19, 2023
In reply to @marymoreau1948 "Have you had any side effects yet?" + (show)
@marymoreau1948

Have you had any side effects yet?

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I haven’t had my Rituximab infusion as of yet, it will take place on July 25th. My prayer is that I want, but I will keep you informed.

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1 reply
michaelah | @michaelah | Jul 19, 2023
In reply to @danputz "I am just over 1000 . from what i researched that is not terrible . I..." + (show)
@danputz

I am just over 1000 . from what i researched that is not terrible . I do have tingling and some stinging in my feet and some tingling in my fingers as well. i also get light headed when i go from sitting to standing up .I am new to this site and thought i would reach out and maybe get some answers as i am having a hard time finding some .I do not know anyone personally that has this that i can talk to . Thanks for your interest!!!

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I have the similar symptoms and have gotten 12 infusions of Rituxan over the course of a year. WM is better (reduced from bone marrow biopsy) but neuropathy is worsening. Just got an anti MAG test showing > 70000. you might consider this test.

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michaelah | @michaelah | Jul 19, 2023

I was diagnosed in 2022 with WM w/ IgM neuropathy. 12 Rituxan infusions latter neuropathy not better. Further tests show anti-MAG > 70000 for which I am taking steroids. My latest symptom is tingling and numbness in my face that is symmetrical. What the heck is that? I thought IgM anti MAG are peripheral neuropathies.

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1 reply
champ9810 | @champ9810 | Jul 20, 2023
In reply to @drwill "I haven’t had my Rituximab infusion as of yet, it will take place on July 25th...." + (show)
@drwill

I haven’t had my Rituximab infusion as of yet, it will take place on July 25th. My prayer is that I want, but I will keep you informed.

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Good luck with your infusian. Mine start a week after yours. Stay in touch.

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psue4 | @psue4 | Jul 21, 2023
In reply to @marymoreau1948 "Have you had any side effects yet?" + (show)
@marymoreau1948

Have you had any side effects yet?

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My daughter was first diagnosed with MGUS and now WM. Had several chemo treatments, which seems to hold her numbers with no changes. Which means no spreading. She is now off chemo and there is possible talk of her starting the Rituximub infusions at a center close to home.
Wishing you all the best. Please keep posting your effects on this infusion. 🙏

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squidlee | @squidlee | Sep 3, 2023

So sorry to hear about your dad. I, too, am in the high risk group. There are many types of treatments, and there is a group IWMF online that tells you about treatments, how others were diagnosed, etc. It was very helpful to me, because high risk is a bit frightening. I learned that many others have the same diagnosis. It was really helpful for me to see how people keep on living, and living well. My treatment was Rituxan and dexamethasone once a week for four weeks, and then I am checked often. I am starting to tire again and am becoming a bit breathless so it may be time for more treatment. Many people use a combination. It helped me to keep remembering the word, "treatable." It's not curable, but it is treatable. I wish you and your dad the very best.

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