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Newly diagnosed with MGUS and so anxious

Blood Cancers & Disorders | Last Active: Mar 13 5:27pm | Replies (23)

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@murray3

I am a 75 year old male who was diagnosed with mGus close to 20 years ago. From that point on, I was very regularly monitored every 3 months and continually had all the 'tests' (routine blood work, full-body x-rays, CT scans, Petscans, bone marrow biopsy (many times), etc.) As my mGus values contined to rise, I was told that I was being monitored for potential multiple myeloma. My levels rose overtime so things were looking more and more to be multiple myeloma. April 2023, I met with my oncologist anticipating hearing the same status as had become routine oveer the past years. However, at that meeting, I literally got hit with a 2x4 right between my eyes when I learned that my paraprotein (IgG) had 'chosen' not to remainas mGus or morph into multiple myeloma but rather became an extremely rare Non-Hodgkin's Lymphoma in the form of an indolent (slow growing) blood cancer, named IgG-secreting Lymphoplasmacytic Lymphoma (LPL). Even though it is indolent, currently there is no cure for it ... All that can be done is to treat and manage it regularly. Maay 2023, I commenced cycle 1 of a scheduled 6-cycle chemotherapy treatment with Bendamustine and Rituximab. About 4 days after receiving chemotherapy, I was totally wiped (like a truck had run over me): however, as the rest of the month went on, I felt 'normal'. Every cycle/every month saw the same things happen. When it was time for my 6th cycle of chemotherapy, my oncologist cancelled it saying that the therapy was virtually ineffective on me and had stagnated/plateaued at paraprotein levels much lower than anticipated. In November 2023 with chemo behind me, I was placed on a BTK Inhibitor, called Zanubrutinib, that saw me taking 4-80mg capsules of active ingredients every day. At least, I could do this at home and no longer had to make monthly trips to the hospital for 2 days of chemo every month. After having taken 15+ months of Zanbrutinib, my blood cancer could best be termed as stable. The level of my IgG paraprotein had stopped progressing while at the same time, Zanubrutinib had not caused those levels to regress either.

In spite of all of this, I continue to be active and, in spite of being severely immunocompromised, live my life as passionately and as positive as possible.

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Replies to "I am a 75 year old male who was diagnosed with mGus close to 20 years..."

Thank you , you have given me hope and inspired me to be positive and fearless
I hope you are doing well please take care