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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sidm | @sidm | Mar 21, 2023

In reply to @newwaldenguy "Just diagnosed with WM. Anyone on oral chemotherapy?" + (show)

Yes, I was diagnosed in Aug. 2022, underwent 12 infusions with retuxin and several IVIG . I'm now on Zanubrutinib 160mg twice daily, since Feb. 15 2023. Oncologist is looking at blood work every 2 weeks for improvement.

ejrquast | @ejrquast | Mar 22, 2023

Thank you for sharing. We look forward to your feedback on Zanubrutinib.

newwaldenguy | @newwaldenguy | Mar 23, 2023

In reply to @sidm "Yes, I was diagnosed in Aug. 2022, underwent 12 infusions with retuxin and several IVIG ...." + (show)

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.

belcar45 | @belcar45 | Mar 23, 2023

In reply to @ejrquast "Thank you for reaching out for help. No doubt you are overwhelmed right now. Mayo Clinic..." + (show)

Thankyou so much I greatly appreciate it I feel really lost all I know is I have a rare blood cancer and they say I’ll be a case that people refer back to and they’ve never seen lesions on anybody like mine were at the time and Bla Bla and thinks since I started to arm myself with some knowledge are getting held back from my health records I greatly appreciate your helpful links 😊👍

joannecathcart | @joannecathcart | Apr 4, 2023

In reply to @dcp45 "Just wondering if anyone else with this diagnosis" + (show)

I've had this for almost 7 years. Been in remission 3 years. Having PET SCAN end of month to see if any new tumors. The infusion treatments do work!!

ejrquast | @ejrquast | Apr 5, 2023

In reply to @joannecathcart "I've had this for almost 7 years. Been in remission 3 years. Having PET SCAN end..." + (show)

Thank you for sharing your experience. Hopeful news is encouraging for all of us. May your scan results be negative. Are you experiencing any symptoms?

belcar45 | @belcar45 | Apr 7, 2023

That’s great to hear hope all goes well 😊 I was wondering if anyone knows what I mean when I say if I kneel down on my knee for any amount of time at all 10 seconds to minute or 2 I have an indent on my knee I think 🤔 my bones are soft upon pressure or something does anyone know what I mean the dent in my knee cap bone stays like it for hours sometimes longer

belcar45 | @belcar45 | Apr 9, 2023

My knee has a dent in it if I kneel on it are my bones soft with WM
Hello, when I kneel down on one knee left alright for any period of time seconds to a couple of minutes, I am left with a very large dent in my kneecaps, wondering if with WaldenStroms macroglobulinaemia are my bones softer I’m not crazy a big dent in my knee cap for ages

Colleen Young, Connect Director | @colleenyoung | Apr 9, 2023

In reply to @belcar45 "My knee has a dent in it if I kneel on it are my bones soft..." + (show)

Hi Ben, I'm tagging fellow WM-ers like @ejrquast @joannecathcart @newwaldenguy @sidm @kincarnati @danputz @nsh, on your question about getting a dent in your knee when you kneel to see if anyone else has experienced this.

@belcar45, does the dent go away after a time?

belcar45 | @belcar45 | Apr 9, 2023

Yes it does sometimes within minutes up to an hour or can still be there day or days later I just want to know I’m not crazy..

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