Hello (my 1st post) - I have Waldenstrom's - diagnosed 2007 or so. Had bad neuropathy which improved somewhat. Also fatigue, sweats, lost 20lbs. and respiratory infections.
Chemo in 2010-2011, after which my blood levels (IgM et al) improved to normal levels, but many after-effects.
Now the original symptoms are returning, I have a new hematologist/oncologist, and they've done a PET which found nodules in my lungs (yikes!)
Not sure what course we'll follow.

I was diagnosed with Waldenstrom macroglobulinemia July of 2021. I went to the emergency room for severe back pain and after six hours I was admitted to the hospital for a possible kidney stone and kidney failure. The next day the Dr. said I had good news and bad news. The good news I passed the kidney stone and the bad news I had CANCER!
I felt like a character in a Charlie Brown cartoon where everything was mumbled, and I could only hear the word CANCER!!!

Initially, it was believed I had Multiple Myloma. Upon further blood work and a bone marrow sample which was sent to Mayo, it was determined I had Waldenstrom's macroglobulinemia. I started several plasmaphersis treatments and one chemotherapy with bendamustine and rituximab.

Several weeks later, and about thirty pounds lighter, I was readmitted to the hospital after a visit with my oncologist.
I was unable to eat anything and developed a SEVERE RASH covering my entire body!! I was itching from my head to the bottom of my feet. I was redder than a ripe tomatoe, had swollen lips and eventually my skin peeled from the top of my head, ears, hands, back and almost my entire body. Later the rash seemed to correlate with IgM levels.

While in the hospital oral chemotherapy was started using ibrutinib. Upon discharge from the hospital it took about three months for my rash and skin peeling to stop. I started to eat actual food and not supplement drinks. The food no longer tasted metalic nor did I have to use plastic utensils.

My oncologist arranged for me to go to Mayo Clinic in Rochester, MN. I spent two days in Mayo and was referred to Dr. Binder for consultation. I was impressed with the time he took to listen to me and answer questions I had. He reaffirmed my oncologist in Sioux Falls, SD was doing what he could and was right about how to treat my condition.
I did several blood draws and a twenty-four hour urine sample. Dr. Binder suggested further testing to help determine issues I am having with pain in my hands etc.

I am so glad I have a strong support system of God, Family and friends!!!! I couldn't ask for better Physicians and people taking care of me.

Linda aka Puffwithfluff

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 .