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MGUS Bloodwork Frequency
What is the recommendation for MGUS bloodwork frequency when there has been no progression for 3 years since diagnosis?
83 year-old hubby's hematologist has been having him go to the lab for blood tests every 6 months for the last 3 years, but he's had no progression so far. After his bloodwork today and the lab taking what he said were about 10 vials of blood, he told me that he thought he didn't need to do this anymore. What do you all say? Should he ask his hematologist/oncologist to reduce or eliminate the frequency of the MGUS testing? He has multiple serious problems he's dealing with currently, including pulmonary fibrosis and severe spinal kyphosis (with two new vertebral compression fractures). He became so short of breath walking into and out of the lab today that he had to use his portable oxygen concentrator at home the rest of the day, and didn't have enough energy to do his mild 15-minute exercises this evening.
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Once a year is typical if numbers are low and stable. He could request annual check ups. Or combine his lab draws so hes not duplicating them.
Can he forward his results?
Why so many vials?
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2 Reactions@grrranny Have you asked his doctor about the schedule your husband is on for labwork? Monitoring for progression or changes is critical to watch for our doctors when dealing with MGUS. When I was at that phase, my bloodwork was every three months.
Ginger
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3 ReactionsFro what it may be worth, MGUS attracts the concept of "Watchful waiting". If it was me, I would be watching and waiting a bit longer than 3 years.
Against that, if he is already 83, he may have had enough of that already, so it probably depends on family history and life-expectancy.
I was adopted but know of my bio-family that the "young ones" go around 82 to 85, most have a crisis about then and the "older" survivors go on to be about 100 or more.
I also know lots of people for whom 75 is already "old". Humans are maddeningly unique.
It may be best to let an 83 Y-O decide for himself.
Hope that helps some.
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3 ReactionsThanks, everyone! We will see what the hematologist has to say about easing up on the testing schedule when we see her next week.
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3 ReactionsI would think the doctor would at least have him come in once a year.. My levels have been down but I only go every 6 months but Im still kinda new with this MGUS. I have a lot of pain but I was told that its not MGUS Fibromyalgia, but I was never really tested for it but I'm on Pregabalin 3x a day at 100mg which helps some but not for long I notice it only helps with some pain in my hands . I have been having tingling in my fingers and feels like fingers are asleep and on fire I get woke up from a dead sleep because I can feel it in my fingers but I really fill that its from my back pain. I would talk to the doctor about the levels being low now for 3 yrs and would like to see about coming less offen. Please let us know how things are going?
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4 ReactionsWhat is "kinda new with this MGUS" is likely to be seen differently by different people.
My own haematologist/oncologist saw me for 5 years before he cut it back to annual visits. The bloods are still done semi-annually.
As for your hand pain, if you're not already on anti-coagulants some people take a supplement called Bromelain for joint pain (me included), and it seems to work like magic within a couple of hours., but do not try it without making sure it is OK with your medical team.
It was suggested to me by an eye specialist for something completely unrelated, but he did say the main reason people use it is for joint pain.
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3 Reactions@grrranny
I guess it depends on your husband‘s numbers and the hematologist’s reckoning of how big his risk of progression to multiple myeloma or other blood cancers. After three years of being followed every three months with bloodwork, my hematologist/oncologist, and I decided to go to every six months. I feel quite comfortable with that at this juncture. I think it’s important, however, for the two of you to be confident that his health is being monitored adequately. If you or he feel that it’s necessary to have more frequent bloodwork, I would certainly advocate for that.
I note as I age, the recommendation for preventative medical procedures gets thinner. I will have what my gastroenterologist says is my last full colonoscopy in a couple of years. When the risk of the procedure outweighs the risk of contracting the disease in the first place, physicians often opt for a very conservative approach. As consumers, we have to decide what seems reasonable to us and advocate for ourselves if our thinking does not align with the physician’s.
I’m sure it’s a great comfort to your husband to have you there to advocate for him and with him.
Let us know how this all works out for him if you would.
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6 Reactions@sheryl71
Ouch! That would really be uncomfortable to have that pain and tingling in your fingers. Have you seen a neurologist?
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1 ReactionThank you Ill look into it yes I'll ask my Dr because I have MGUS and Fatty liver disease so I don't try anything less I ask my Dr first
No I have not maybe something I should look into didn't think of a neurologist Dr and yes its very uncomfortable and very annoying.