Waldenström's Macroglobulinemia

I was diagnosed in 2022 with WM, and lately I have been having tired spells and shortness of breath. Don't know if these are some symptoms of WM or just older age. They don't last very long.

So sorry to hear about your diagnosis. I think it is hard to tell sometimes, and maybe it’s both! Fatigue is a big one for me. It’s much better than when I was first diagnosed, but it is still there. I had shortness of breath at the beginning, but it is also better. My IgM was 5489 at diagnosis, and I had hyperviscosity which caused two eye strokes. Am now at 1460. Again, much better, but I still tire out and every now and then, do have shortness of breath. Wish you the best in your journey. At least it’s an indolent cancer, so that brings me some peace of mind.

Welcome, @djf31. It is all too common to dismiss symptoms as a sign of getting older and hard to distinguish the difference when living with a chronic conditions, especially Waldenstrom macroglobulinemia where fatigue is one of the top symptoms.

I'm tagging @ejrquast @sagenest @sstouten @psue4 @squidlee and others who live with WM and can share their experiences.

You mention that the tired spells or the shortness of breath don't last long. Do you notice a pattern? Do they happen at specific times of the day or are triggered by certain activities?

So sorry to hear about your diagnosis. I think it is hard to tell sometimes, and maybe it’s both! Fatigue is a big one for me. It’s much better than when I was first diagnosed, but it is still there. I had shortness of breath at the beginning, but it is also better. My IgM was 5489 at diagnosis, and I had hyperviscosity which caused two eye strokes. Am now at 1460. Again, much better, but I still tire out and every now and then, do have shortness of breath. Wish you the best in your journey. At least it’s an indolent cancer, so that brings me some peace of mind.

@weissmntc, I think @djf31 will be interested to see your reply and that you experience shortness of breath and tiredness too. Anemia certainly can contribte to both those symptoms.

They happen when I’m hiking (up, not down) and going up more than one flight of stairs. I’ve known I have anemia for the last 5 years at least which has been gradually getting worse and I attributed it to that. I’m otherwise in the best shape I’ve ever been in (at age 67).

Welcome, @djf31. It is all too common to dismiss symptoms as a sign of getting older and hard to distinguish the difference when living with a chronic conditions, especially Waldenstrom macroglobulinemia where fatigue is one of the top symptoms.

I'm tagging @ejrquast @sagenest @sstouten @psue4 @squidlee and others who live with WM and can share their experiences.

You mention that the tired spells or the shortness of breath don't last long. Do you notice a pattern? Do they happen at specific times of the day or are triggered by certain activities?

I was diagnosed in 2022 with WM, and lately I have been having tired spells and shortness of breath. Don't know if these are some symptoms of WM or just older age. They don't last very long.

I was recently diagnosed with Waldenstrom Macroglobulinemia. My hematologist/oncologist will see me every 6 months for labs and office appointment. Till then no treatments. Just watching and waiting. I would like to hear from others with this diagnosis.