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Discussions (35)
Waldenstroms lumps in my jugular veins sore
Hello everyone, just wondering if anyone else with waldenstroms has experienced pain in the neck and throat area in the veins or muscle im not...
Last active: Feb 8, 2024
Waldenstroms: What to expect immunoglobulin infusions with rutuxan?
Been on rituxan infusions and rituxan for months now. Ugg and uga dangerously low and gum coming down but very slowly . Doc added immunoglobulin...
Last active: Mar 12 1:46pm
Waldenstrom macroglobulinemia: What can I expect with chemo?
I'm 40yr old male, just been recently diagnosed with Waldenstrom macroglobulinemia, I have no symptoms. I'm going to start chemo in a few weeks, what...
Last active: Jul 5 11:10pm
With Waldenstrom, what side effects did you have with ibrutinib?
My husband has waldenstrom. Since last 3 years he has been on ibrutinib. Recently he developed pleural effusion. Wondering if it is side effect of...
Last active: Oct 17, 2023
Waldenstroms: Can severe neck and shoulder pain be due to meds?
Can severe neck and shoulder pain onRight side be related to my Waldenstroms orMeds? Aldosterone denolitaring.New symptoms.
Last active: Feb 26 10:03am
Waldenstrom macroglobulinemia (WM) 3 years: Might I be in remission?
I thinkMy dr finally found the right formula. Brukinsa, Ruxience infusions, omigam and dexamethodone. Igms finally going down. Iga non existent but other immunoglobulins much...
Last active: Aug 21 4:01pm
When will treatment stop?
Waldenstroms about 2 years Now. On Ruxience and Octigam infusions and Brukinsa pills… also dexamethosone.. still anemic. Numbness in feet Much better. But Igm coming...
Last active: Sep 16 10:12am
Extreme constipaion
Brukinsa, dexamethosone and infusions of Ruxience, and s octigam twice a month. Straining causing bleeding. Only thing that helps is enemy but makes me sweating...
Last active: Jun 10 6:05pm
Palliative care?
Just receives referral for palliative care In mail. Concerned Because it Was Never discussed with oncologist for My Waldenstroms. I see him on June 30th....
Last active: Jun 20 2:08pm
Dr wants to add immunoglobulins
Over a year with Waldenstroms diagnosis. They now think I’ve had it much longer On Ruxience, prednisone and Imbruvica. Igm coming down too slowly but...
Last active: Mar 31 10:24am
Cataract surgery possible?
My eye cataracts Have gotten very bad since on infusions, Brukinsa and dexamethosone for Waldenstroms. Ophthalmologist said I need the surgery but can’t do it...
Last active: Jun 29 3:41pm
Does anyone have lymphoma and no measles immunity?
Just wondering! Yes I’m the lucky one in that charming situation. Unable to get the MMR vaccine because it’s live attenuated and unsafe. I have...
Last active: Sep 8 8:52pm
COVID while on chemo and antibotics?
My daughter has Waldenstrom and going through a new infusion treatment. Recently she came down with a head cold and she took a covid test...
Last active: Jan 14, 2024
WM / MZL
Hi, I’m 43 years old, male, and was just diagnosed via bone biopsy for nhl, with the differential lpl/mzl. From what i understand this is...
Last active: Sep 16 10:09pm