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Discussions (40)
Anyone diagnosed with both myelofibrosis and Waldenstroms lymphoma?
I was diagnosed with myelofibrosis two years ago and started Hydrea 250 mg daily with no adverse results.Now Waldenstroms lymphoma has been added to the...
Waldenström macroglobulinemia (WM): Anyone on zanubrutinib (Brukinsa)?
My dad has had this diagnosis for years. He is 86 years old. He Was treated with “infusions” forever…idk the name of med. Recently however..a...
Waldenstrom: When will treatment stop? Is this forever?
Waldenstroms about 2 yearsNow. On Ruxience and Octigam infusions and Brukinsa pills… also dexamethosone.. still anemic. Numbness in feetMuch better.But Igm coming down and igg...
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...
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...
With Waldenstroms for a couple of years. Numbers including hemoglobin
Dr just added prednisone to my meds even though I take dexamethosone . Is this normal protocol? I get Ruxience, and octigam infusions as well.?Been...
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...
Waldenstroms patient diagnosed with brain menigioma: What to expect?
Any idea what to expect? Oncologist sending me to neurologist🥲
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...
Waldenstrom macroglobulinemia: What to expect during watch & wait?
Anyone familiar with watch and wait of this cancer?
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.
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...
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...
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....
Lymphoplasmacytic Lymphoma that is not WM?
Hi, I’m seeking others who are living with LPL that is not Waldenstroms. (IgG vs IgM) I would appreciate hearing about your experience please. After...
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...
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...
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...
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...
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...
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