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Waldenstrom macroglobulinemia: What to expect during watch & wait?

Blood Cancers & Disorders | Last Active: Nov 14, 2023 | Replies (90)
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@loribmt

Welcome to the club, @badnewsforme We just had another new member join the WM group yesterday. @bacord83 was recently diagnosis with Waldenstrom and hasn’t started treatment yet and is researching options, since this is new to her. Maybe your experience with the IVIG and Chemo will help her get a better understanding.
You were diagnosed with MGUS in 2020 and then your disease progressed to Waldenstrom’s in about 3 years? That’s when you began receiving IVIG infusions. Which is used to treat inflammation or autoimmune conditions. https://www.healthline.com/health/ivig-infusion
How did you do with the IVIG infusions? Any side effects?

When your condition progressed further you then began chemo treatments. Could you let us know the name of the treatment?
Thank you for sharing your story here! It takes a village and we never know how many people we can help when post our experiences. ☺️
I know it’s pretty early in the game but have you noticed any side effects from the chemo?

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Replies to "Welcome to the club, @badnewsforme We just had another new member join the WM group yesterday...."
badnewsforme | @badnewsforme | Aug 14, 2023

Hello Lori and group, IVIG infusions continue for autoimmune condition. Receiving every 3 weeks on a different schedule from Waldenstrom treatments. Infusions have been well tolerated with minimal side affects.
For Waldenstrom treatment I’m receiving Bendamustine (Bendeka) and Rituximab (Rituxan) once a month on 2 consecutive days each treatment. First treatment was split between the 2 medications and given over 8 days. This was an attempt to minimize side affects. Extreme fatigue and increased blurred vision on the day of treatment. Fatigue issues improved after 48 hours. Blurred vision was a problem before treatment started and continues. This may be related to blood viscosity elevation.
Second round of chemo Aug 28 & 29. Will update following treatment.
Best to all!

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