Waldenstroms and amyloidosis

Posted by azjulie @azjulie, Sep 8, 2016

Diagnosed with the Waldenstroms a year ago, just today with amyloidosis. Will start treatment next week. Anyone have these or know anything?

Interested in more discussions like this? Go to the Blood Cancers & Disorders Support Group.

I apologize for not responding today but I will have the specialist info for you tomorrow. The following is a link for IWMF’s Newly Diagnosed to get you started: https://iwmf.com/newly-diagnosed-wm/
Please know that we are here to support you. Eunice

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The following link is an IWMF physician directory for WM specialists. Please note that there are two listed for TX. I am communicating with our IWMF office to see if I can also find you a young WM patient who would be willing to communicate with you. Thank you again for your reaching out for support.

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So sorry. I forgot to include the IWMF Physician’s List for your reference. https://iwmf.com/wp-content/uploads/2022/01/IWMF_PHYSICIANS_DIRECTORY.pdf

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Mi madre de 85 años fue diagnosticada y empezó el tratamiento Rituximab…mayo 4; no tengo mayor información sobre cómo cuidarla….
Agradezco si alguien me guía.

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@maya1967

Mi madre de 85 años fue diagnosticada y empezó el tratamiento Rituximab…mayo 4; no tengo mayor información sobre cómo cuidarla….
Agradezco si alguien me guía.

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@maya1967, how is your mother doing on the Rituximab treatment? How are you?

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My Dad had Waldenstroms Macroglobulinemia (rarer than amyloidosis) for 10 years from age 63 to 73. He took oral medication each year, but missed the last year, and the decline was obvious. He had blood transfusions and plasma exchange, but nothing helped. And yes my father did pass away, but this was twenty-three years ago. Hopefully there's more superior research since then.

It is not inherited, and most infected people have no history of disorder in their family. The condition usually arises from genetic changes in blood cells that's acquired during a person's lifetime.

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