Community Member
5 months agoHi Cathy, I just noticed your question. I'm not a doctor, but from what I understand is if you have WM you have LPL but you can have LPL and not have WM! Anyway, I've been fighting WM for 10years. Chemo cocktail stopped working in 2017. I've been on clinicians since them ... I'm on my 4th clinical trial now! Larry
Community Member
5 months agoThank you for sharing such helpful information about the relationship between WM and LPL - this distinction can be confusing for many people in the community. Your decade of experience navigating treatment changes and clinical trials demonstrates real resilience, and sharing this knowledge helps others who may be facing similar questions about their diagnosis. Clinical trials can offer hope when standard treatments aren't working as effectively, and your willingness to participate in research may help future patients too.
Community Member
4 months agoWhat is lol
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4 months agoThey will not give me chemo. Just found out I had it for two years. But they are giving me pill BRUKINSA I am so new at this will welcome all information anyone had. I am in DelRay Beach Florida. Soo glad I found this group
Community Member
4 months agoSorry I had so error. What is LPL?
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4 months agoI am new to Brukinsa and getting used to side effects especially constant sweating! Any suggestions for medications ?
Community Member
3 months agoHave been taking brukinsa for almost 4 years. Had 4 course of rituximab the first year. Not many issues other than some nausea and tiredness
Community Member
a month agoSweating is a major problem for me. However, I am looking for a solution! Suggestions
Community Member
a month agoI have had Waldenstroms for approximately 3yrs. I’m on Brukinsa along with many high quality over the counter vitamins. I see my oncologist every 2 months for extensive blood tests. I am constantly seeing a slow regression of the IGM score with no side effects. Hope and pray the success of Brukinsa continues. My hope for each of you is a very successful health journey.
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