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Discussions (45)
Brukinsa for Waldenstrom and Skyrizi for Crohn's/colitis
Anyone out there taking Brukinsa for Waldenstrom and Skyrizi for Crohn's/ulcerative colitis. If so, what has been your experience?
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...
How to prepare for after first infusion treatment for Waldenstrom?
Newly diagnosed with Walderstroms and scheduling 1st Infusion Treatment. How should my spouse and I prepare for this new experience. Looking for the wisdom of...
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...
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): Deciding treatment options
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...
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...
Adding Venclexta to treatment for Waldenstrom: What to expect?
igms slowly going up after two years on ruxience and octigam and brukinsa. dr just ordered venclexta and insurance denied it🪀. any ideas? am i...
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...
Blood cancer for Dori
I mentioned I was diagnosed with blood cancer there's three different kinds waldenstrom macroglobulinemia, lymphoma or multiple myeloma. Out of the three which one would...
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...
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