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Waldenstrom macroglobulinemia: What can I expect with chemo?
I'm 40yr old male, just been recently diagnosed with Waldenstrom macroglobulinemia, I have no symptoms. I'm going to start chemo in a few weeks, what can I expect, does anyone have any experience with this cancer or treatment. Any advice will help.
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Does anyone know if there is treatment or research going on for MUGUS using CRISPR?
Hi @amelton, what treatment will you begin? How soon? How are you doing?
Hi, so sorry. With this being such a rare blood cancer. What lead to your diagnosis. I have very high Total IgM low igg but I’ve been super sick for while. My Dr referred me to hematology and oncology. This is one of the issues they mentioned. Trying to connect with others who might have high IgM
Mr. Perez, I read where you said you had no symptoms, but that you were starting chemo soon. My question is, did your doctor suggest this? I was diagnosed 3 years ago, but I am on a wait and watch prodical.
I have very high IGM too. Doc says it's from the Marginal Zone Cancer I have. Too much protein in my white blood cells. Starting treatment in a couple of days. Rituximb. anyone taken that.? How'd it go. Infusions.
Thank you for your reply. I’ve been trying to connect with others with High total IGM mine is 727 with a low igg dr referred me to hematology oncology and have apt in 2 weeks. Trying to get info so I have my questions ready.
Any info or your own experience would be greatly appreciated. Hope you’re feeling ok and well
Yes, after a time waiting, my first treatment was a series of infusions with Rituximb. With the exception of one infusion, they went well. I’ve since been “graduated“ to oral meds and they seem to be working well. I hope your treatment goes as well as mine has so far.
Hi @travelmom4 ,
[I was dx'd with SMZL, WM, and CLL.]
I have an IgM of 2350, IgG 320, IgA of 25. I've only been on Zanubrutinib since I was dx'd last May. I had a few very slight lymph nodes swelling & a slightly enlarged spleen. While being on Z didn't impact those numbers much, my platelets went from 99 to 176, and the vast majority of my blood tests are now all in the normal range. It seems to be working fine at this point. Other WM-specific test - my Kappa FLCs dropped from 12 to 8, and my leukocytes went from 47 to 5.
At my next appt (this month) we will discuss the benefits of adding a BCL2 inhibitor or an anti CD20 monoclonal antibody "to deepen the response".
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1 ReactionMy IGM is 2250. It's been rising for 2 years since my diagnosis. I had a bone marrow biopsy.
Marginal Zone Lymphoma is rare and slow growing. I've been on wait and see but now my symptoms are horrible. Fatigue,weight loss, shortness of breath. So I start Rituximab tomorrow.
Wow! I’m so sorry to hear everything you’re going through. Thank you so much for your reply. There just isn’t much information out there about high IgM that I’ve found.. I really appreciate your share. Wish you all the best and good health. I’m hoping that my IgM being high is just a fluke or virus. I’ve been sick with GI issues for a while.. I had a total Colectomy in 2023 and melanoma in 2019 . Thank you again