← Return to Waldenstrom macroglobulinemia (WM): Deciding treatment options

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@rich1964

Hi my name is William Kelly I don’t have any answers but I can tell you my story.I was 45 in 2009 when I was diagnosed with Waldenstrom. It was through a blood test after I had shortness of breath. Then a bone marrow biopsy to confirm the bloodwork. It was a very scary time I didn’t know what to expect. I went through a lot of anxiety not knowing what was next. My first chemo was cytoxon oral. And rituxumab intervenes. After my treatment I went into remission for 14 years just yearly dr appt. Then my igm jumped up to 5500 very quickly. In 2022 I had another round of chemo with bendka rituxamab. Bendeka for me was a miracle drug it put all my blood counts in the normal range. And here I am still kicking. I never let this cancer define who I am. Just a bump in the road that the Good Lord put there for a reason. There are a lot of advancements in drugs to treat this cancer so hang in there and keep your head held high. God loves you and you will get through it.

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Replies to "Hi my name is William Kelly I don’t have any answers but I can tell you..."

Thank you very much! I know these treatments are/can be very effective. Since I originally posted, I’ve found out I have both genetic mutations (MYD88 and CXC4) so it appears that the Benda/R course is the most effective. Hopefully by June I’ll be in remission too. Happy new year to you!!

Thank you for your encouraging words. Your beginning story sounds like mine. My recent bendeka(bendamustine) and rituximab treatment saw a rise in my hemoglobin to a close to normal level. My white blood cells are improved but platelets dropped but not too drastically. I am keeping faith that I’m on the right path . My best wishes to you in the New Year.