Waldenström's Macroglobulinemia

I have not had any symptoms so far. It is good news yo me that the pills work for you.

Hi @fyrizonly, I can understand the unsettling feeling of not knowing what to expect, especially when your husband has WM as well as other issues like high blood pressure and type 2 diabetes. I’m tagging other members living with Waldenström's Macroglobulinemia like @ejrquast @psue4 @squidlee and others, who can help answer any questions you may have and share their experiences.

Is your husband seeing a hematologist?

Please contact the IWMF organization. It has an excellent magazine which provides information and articles from doctors and access to seminars. It can also link you to support groups which will enable you ask questions and have discussions with other patients.

I am sorry to hear about your husband's diagnosis and wish him the best. If you are looking for an amazing support group go to Facebooks Waldenstrom Macroglobulinemia Support Group. You will have to submit an application because it is private as are all the postings, they only allow family members, caregivers, and WM patients to join. It has 6300 WM members around the world and you will not find a more supportive, caring and knowledgeable group of folks than this WM community. You will feel right at home there, I love having it available, I can't say enough good things about it and I wish I knew about it when I was diagnosed in 2017. You can also go to the IWMF and LLS websites as well for support and info.

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.

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.

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).

@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.

I wake up with this problem, so it doesn't come on with my doing anything physical. My doctor said that WM causes anemia. Than you for your comment.