Waldenstrom macroglobulinemia (WM) 3 years: Might I be in remission?

Good for you! I am also just over 3 years and still getting Rituximab infusions 1 ever 2 months and Brukinsa for the last year and I am expecting my neuropathy to be gone in the near future. My doctor was just hoping that the Brukinsa would just stop the progress of the neuropathy (anti-mag) but it is reversing. Thought I wouldn't be able to walk by now if it didn't work. So good luck.

Thanks so much for the encouraging message. Are you also getting immunoglobulin infusions? Wondering how long both infusions will be needed. Also how long the steroids and brukinsa? Going to try to get some answers Monday when I see the oncologist. I wonder if we ever actually go into remission like other cancers. Hope you continue to improve!

No immunoglobulin but been getting Rituximab for three years. My third bone marrow biopsy shows inactive in the bone marrow. My wife says I have chemo brain sometimes and work is more difficult, but I intend to retire at the end of the year. I think the differentiating thing with me is the anti-mag titers > 70000, which is rarer as my oncologist hasn't seen this before and such bad neuropathy. Still upbeat and feeling better!

I would also like to say thank everyone for sharing most notable the mentors - this is the only "social media" that I engage with and it is very helpful.

Your treatment sounds very encouraging! Like you, I am in my third year of treatment. I started with Rituximab infusions and have now graduated to Brukinsa. I've been on Brukinsa for only a month now, but my oncologist is encouraged by the results of the recent blood panel. My understanding is that while this is ‘incurable,’ something nearing remission is possible. It's good to hear about your encouraging progress!

Same here

And we love having you here, @michaelah! Connect is a success due to members such as yourself, @zeedee1 and the countless others who come here seeking support or to offer their wisdom, empathy and hope for the continued health of people in need of a lifeline.
As a mentor in this Blood Cancer & Disorders group, I’m so appreciative of the members who step up to answer questions and to welcome newbies to the support group. We all know what a roller coaster ride these diagnoses can be! Being able to speak with someone who knows what you’re going through is priceless. So thank you for being an integral part of this fabulous forum.
I read in your previous post that you’re intending to retire at the end of the year. Good for you! Do you and your wife have plans for travel or anything special to celebrate the milestone?

I was diagnosed with W-M about 3 yrs ago. LgM count in the 2000-2500 range so no treatment yet. Staying as active as possible. LgM slowly increasing every year.

Do you have symptoms. They put me on meds then infusions because of all the awful symptoms even more than the bad numbers.

I just started chemo and immunotherapy for WM. IGM is 6900. Have hyper viscosity syndrome and they found a mutated gene in the Pathology report. About a month in now and developed a severe body rash (head to toe). Going back in today for a checkup and might have to go on iv of steroids! Anyone else experience this. fyi male 66 and 7 months