Waldenstrom macroglobulinemia: What to expect during watch & wait?

catalinae | @catalinae wanted to do a private comment; but don't know how. I sincerely appreciate someone who can understand blood disorders and avoid cold. I have cold urticaria - anaphylaxis shock when I get cold. I've always been high on iron (but) first time ever; I'm have MF and PV. We have opposite problem; you have macroglobulin (red blood cells to big > over 100) I have macrocytic anemia (red blood cell is

Thank you for your note! I really appreciate any and all ideas from anyone that can understand what we are going through. I am not familiar with this system,so in order to have a private comment,please allow me more time to understand what I am doing. Hugs!

In late 2019, my platelets began to drop. In January 2021, blood tests and a bone marrow biopsy and aspiration diagnosed me with having Lymphoproliferative Disorder - low grade B cell Lymphoma/Leukemia. There is no cure and treatment is offered when I start showing symptoms. Are any of you dealing with this?

I have been dealing with low platelets and enlarged spleen since late 2019. In January 2021, a bone marrow biopsy and aspiration together with blood work diagnosed my with having low grade B cell Lymphoma/Leukemia - Lymphoproliferative Disorder. I am trying to find someone who has this and are you showing any symptoms yet and what you are doing about it.

You are welcome and please do not hesitate to reach out.

catalinae Thank you for your reponse, any up dates lets us know. Prayers and hugs!

I have been diagnosed with Monoclonal low grade B cell Lymphoma/Leukemia - Lymphoproliferative Disorder. Just been told to go home and live my life as there is no cure and treatment does not start until I have symptoms. Labs are not looking too great but could be worse, I suppose. I also now have Hypothyroidism. What next? Let me know how you are doing.

I too have been diagnosed with Monoclonal low grade B cell Lymphoma/Leukemia - Lymphoproliferative Disorder. My labs are not great but stable. No symptoms as of yet. Are you receiving any treatment? I feel tired and sometimes feel hot with a very light sweat over my body especially my forehead. I have also been diagnosed with Hypothyroidism and have to have further labs done for that. No treatment yet either. Would love to hear back from you.

You are in my thoughts and healing wishes are going your way!
With this disease (WM) unfortunately it seems to be a waiting game for symptoms to show up.
We are all in this together. More hugs going your way!

You too are in my thoughts.. It is scary when anything untoward shows up as far as health as you think... is this it. The treatment seems to work well for the most part. Thanks for getting back to me.