Advice for Amyloidosis with Waldenstrom's macroglobulinemia

Posted by patio29dadio @patio29dadio, Mar 6, 2022

61 year old Male in otherwise great health. Eat well, athletic non-smoker... very moderate drinker. Diagnosed with WM in 2017. IgM numbers too low to treat. However, having symptoms that include para nasal sinus disease, peripheral nephropathy, edema and fatigue... all lead to a diagnosis (bone marrow biopsy and other tests) of Amyloidosis in late 2021. Kideny's impacted and have proteinuria which seems to explain para nasal sinus problems and edema. Started on weekly 400MG dexamethasone and weekly infusions of Rituximab. In six weeks once dexamethasone is done, start bendamustine. Hemo Onco is a good one (although retiring soon). Says I will need a bone marrow transplant.

Need to talk to a specialist that can confirm this treatment protocol and offer advice.

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Colleen Young, Connect Director | @colleenyoung | Mar 7, 2022

Hi @patio29dadio, welcome. You're facing some big decisions. Allow me to bring in fellow members who have experience with Amyloidosis, Waldenstrom's macroglobulinemia and bone marrow transplant (BMT) like @loribmt @gaetanche @irishk @jam5 @puffwithfluff @ejrquast to share their experience and advice.

While we wait for others to chime in, you may also be interested in reading about others in this related discussion:
- Waldenstroms and amyloidosis: https://connect.mayoclinic.org/discussion/waldenstroms-and-amyloidosis/

It sounds like you are also looking for an expert consultation to discuss your next steps for treatment and possible BMT. I might suggest reaching out for Mayo Clinic. Here's the contact information and how to request an appointment or a physician referral http://mayocl.in/1mtmR63

Is going to Mayo Clinic an option for you?

ejrquast | @ejrquast | Mar 7, 2022

In reply to @colleenyoung "Hi @patio29dadio, welcome. You're facing some big decisions. Allow me to bring in fellow members who..." + (show)

Being a WM patient and knowing other WM and Amyloidosis patients, I concur with Colleen that consulting with a Mayo specialist who specializes in both WM and Amyloidosis is greatly advised before proceeding. I am aware that Dr. Morie Gertz, Mayo Clinic, specializes in both WM and Amyloidosis.