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Waldenström's Macroglobulinemia

Blood Cancers & Disorders | Last Active: May 25 10:40pm | Replies (135)

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Just wondering if anyone else with this diagnosis

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Replies to "Just wondering if anyone else with this diagnosis"

I was diagnosed with WM in 2015. As of yet, I am stable, no symptoms, no treatments. Every 3 mos. I get my labs done. Every 6 mos, I see my oncologist. Very slow growing. Some people never have treatments! Life goes on. Yes, I constantly live with the fact that I do have cancer, but I thank God every day for where I'm at.

Welcome, @66andcounting.
I hope you and @dcp45 will connect. dcp also recently joined Connect.

66andcounting, with not having any symptoms, how was WM diagnosed for you?

Went in to my general practitioner for my yearly checkup. He called me back, wanting more labs. Something wasn't right & he couldn't put a finger on it. That was in January, 2015. I kept going back for still more labs. Finally in March, he called me & said he was referring me to a hematologist/oncologist. She was checking me for my severe anemia. One test led to another, till finally she did a biopsy. I still was not concerned. Then she called me in, asking me to bring my husband. That was June. I was shocked! Got a second opinion...same thing.

I've had this for almost 7 years. Been in remission 3 years. Having PET SCAN end of month to see if any new tumors. The infusion treatments do work!!

i was diagnose with waldenstrom 2 years and 2 months my levels are increasing and know Sam at 3500 problem more know going back in July to dr and blood work i would like to know if i go to Mayo clinic is the treatment better or more testing

Yes, do you too?

I was officially diagnosed with MGUS quite by accident after having bloodwork done to help explain frequency of sinusitus in February 2023. I then had a bone marrow biopsy which was most unpleasant. The hematologist that saw me did not gather all the pathology reports and slides initially to confirm diagnosis of WM. I decided to change to a new hematologist/oncologist who then put it all together, analzed the results and informed me that it is indeed WM. I now have my bloodwork checked every three months and see an expert blood cancer doctor familiar with WM. I am asymptomatic. It is so strange to have a condition that most people (like me initially) have never even heard of. I am so grateful this disease is slow growing and that I may not experience any symtoms for the remainder of my life.