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Waldenström's Macroglobulinemia
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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i was diagnose with waldenstrom 2 years and 2 months my levels are increasing and know Sam at 3500 problem more know going back in July to dr and blood work i would like to know if i go to Mayo clinic is the treatment better or more testing
I just had a BMB which showed MD588 mutation and IgM antibodies. Can I expect more of these changes to progress with the disease
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1 ReactionI am assuming you had a bone marrow biopsy to be diagnosed with WM. Depending on what year the BMB was performed you should know your mutations. The mutations and data help our WM specialists determine what treatments they would recommend when symptoms occur.
I am not sure what you are referring to with “protein antibodies.”
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2 ReactionsI am on no other meds, and have no cardiac conditions, so my treatment plan is simple. I have not had any concerning side effects. I bruise more easily. My risk for a-fib is low. People with cardiac disease or who are on medications for other chronic conditions may have more involved treatment plan.
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1 ReactionI am on monotherapy, meaning "one drug" therapy. I did not get Rituxin or Bustimab. Both my initial MD and second opinion suggested monotherapy with zanubrutinib. This seems to be based on many factors. You need to ask your prescribing MD what are your options and "Why" he choose that treatment. In regards to improvement. My Hgb returned back to normal from mid 7's. My fatigue resolved. I basically felt "normal" within 3 weeks. My monoclonal IgM decrease about 50% within 6 months of therapy. I asked a lot of questions and I also did research. Previous posts provide good resources. Always look for the most recent information. The data seems to change fast. Best regards.
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2 ReactionsHad Rituxan and Bendamustine for MZL ,and was discontinued after two cycles due tom intolerance.
Oncologist now suggesting Brukinsa( Zanabrutinib 320mg OD), but I am concerned with hemorrhage risk due to taking Xarelto20mg OD for persistent Afib with cardiac amyloidosis. Have MYD88 mutation
What is your plan to treat WM? Do you live near a good hospital rather than a rural hospital as I do. I do not have confidence with the Dr's here. What genetic deletion do you have? IgM antibody?
I am sorry you are experiencing multiple issues to balance with a new treatment. I have WM and have not had Brukinsa.
Have you experienced any side effects and are you taking any other cardiac medications?