hemolytic anemia with splenic marginal zone lymphoma

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Has anyone experienced this?  I am, not too bad yet, but it's definitely happening.  I read it's a poor prognositic indicator.  Onc wants to do a whopping burst of steroid, I'm figuring it'll just come rip roaring back, wondering if maybe a chronic low dose might be better.

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  • po18guy
    po18guy Member Posts: 1,488 Member
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    AIHA- autoimmune hemolytic anemia

    I had it with a completely different, T-Cell Lymphoma. That variety causes the relase of cytokines which trigger the immune system to begin attacking various parts of the body. Marrow and red cells are an easy target. In my case, it was a matter ofcontrolling the aggressive lymphoma. With MZL, it is a different case, since it is a slow growing, chronic lymphoma. A blast of prednisone might help, but its side effects can be very detrimental: hypertension, weight gain, mood swings, cataracts, osteoporosis to name a few.  You might want to consider a second opinion, as there may be a clinical trial or a new combination of existing drugs which can knock the MZL back - and the anemia should go right along with it. 

  • zsazsa1
    zsazsa1 Member Posts: 566 Member
    edited April 2020 #3
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    Thanks.  I'm responding to

    Thanks.  I'm responding to the rituximab, having just completed the initial 4 weekly treatments.  If my numbers are bad next week, I'll go see the guy at Yale, too, and see what both docs advise.  I'm well aware of side effects of long term steroids, not eager for the effects of the short term burst either, but I'm afraid that the short term burst's efficacy would be very brief.

  • zsazsa1
    zsazsa1 Member Posts: 566 Member
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    I'm about a month out from

    I'm about a month out from the 4 weekly rituximab, and doing really well.  Nausea gone.  Bad taste in mouth gone.  Last bloodwork showed steadily climbing hemoglobin (up to 11.4) and platelets up to 162.  I wish I could travel now!  Stuck in lockdown at home.  But it's really nice to feel pretty good - I almost forget that I have cancer.  Next rituximab (first of 4 every other month infusions) is in early June.  I never did the steroid burst - wasn't necessary, and oncologists told me that the efficacy would be transient.  So glad I dragged my feet on using the steroids, since it wasn't needed, and wouldn't have made any difference.