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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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@connie72

I was diagnosed with Waldenstrom Syndrome in 2013 . I received 2 years of chemo . I have been in remission about 6 years . I see my Dr. every 6 months and get blood work a week before I see him ; so far I am still doing well.
I wonder if any one with this has to be on a life time of antibiotic therapy to prevent pneumonia ? I take Septra twice on Monday & twice on Thursday . I have a friend with the same cancer , same Dr. and does not take it ?
I also get IVGA every month from Oct. to March to help boost my immune system . I trust my Dr. 100 % . Just curious .

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ejrquast | @ejrquast | Jan 20, 2022

I have WM and was on Bactrim during treatments but taken off 17 months after my last treatment because Bactrim adversely affected a couple of levels. I have a friend with WM who was on Bactrim during her treatments, that ended in 2017, and she continues taking Bactrim.
I have IVIG when My IgG levels get low but not monthly.
If you go to the IWMF (International Waldenstrom’s Macroglobulinemia Foundation) website -https://www.iwmf.com/ - and search for the Helpline, you will be able to contact a volunteer who can assist you with any questions about IVIG. Also, the IWMF has an IVIG fact sheet that is extremely informative.

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