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← Return to Always run down with MGUS
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@dazlin My MGUS advanced into smoldering multiple myeloma officially in Nov 2019, so I am on a quarterly regimen of bloodwork and specialists appointments now. In fact, I go in on 2/25. It is my understanding and belief that the situation has its ups-and-downs, kinda like a rollercoaster ride. The way we take care of ourselves, and learn how to creatively use our energy allotment each day, is the key. The eating healthy and being watchful, like you said, is important. What was hard for me was to acknowledge that I simply did not have the total energy I once had. So, I had to scale back. That was hard. When do you go back to your doctors, next? Write down your questions and listen to what they say. Each person is different, and it might be the right time for your children to start helping you on all those holidays!
Ginger
Replies to "@dazlin My MGUS advanced into smoldering multiple myeloma officially in Nov 2019, so I am on..."
Hi Ginger,
Sorry to hear about the progression to SMM. I was curious do they consider you for any oral treatments or something to slow down progression? I'm still in the MGUS stage diagnosed in 5/2020. I see my oncologists every quarter or 3 months. My FLC ratio went up to 2.22 my diagnosis is MGUS with lambda subtype. MY IGG is 2200 down from 2300 and shows M -spike. I would love to just go every 6 months, but oncologist is not recommending that at this time. I thought after 1yr diagnosis they evaluate every 6-12 months? Do you know anything about that?
Mitten
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@gingerw , I agree, I feel very disappointed about lack of energy...especially when ambition is high and I so enjoy everything I do. Feels very weird the throbbing achiness and fatigue that suddenly hits. I know I have to plan accordingly. I go back to dr April 28th. The dr oversees my case, adamantly insisted I repeat bloodwork every 4 months. Last time, I saw an assistant and he booked me for 6 months. I have discussed my symptoms, but I feel there's not much to help since my labs are stable. I haven't bothered lately. Anyway, it helps to know this may be related. I sincerely hope you beat this, and get well... sorry to hear your in smoldering...will they treat in anyway, or just watch? thanks for sharing!!