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Always run down with MGUS

Blood Cancers & Disorders | Last Active: 6 days ago | Replies (82)

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@pmm

Unresponsiveness from a medical team is very concerning. I don't know how invested you are in that particular team but were it me, I would be escalating my concern to someone connected with the facility. There are generally social workers or patient care advocates… Administrators… Someone. One thing that I learned from being a medical social worker is that patients must advocate for themselves. We can't just get angry about it or chat about it with friends and family, we have to confront it head on.
I am not a physician but I do know that it is important to be tested on a regular basis. Some MGUS patients are tested every three months, others who are considered low risk every year. I go in every six months… I am a higher risk but my blood analysis numbers have been very stable. I am comfortable with this.
I don't know your location or the availability of other hematology/oncology physicians in your area, especially those with experience in treating multiple myeloma. But you might consider a second opinion if you want to stay with your current providers.
let me know how this goes for you. I'm rooting for you.

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@ppm