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MGUS Bloodwork Frequency

Posted by grrranny @grrranny, Aug 21 5:27am

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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sheryl71 | @sheryl71 | Aug 28 8:06am
In reply to @grrranny "Thanks, everyone! We will see what the hematologist has to say about easing up on the..." + (show)
@grrranny

Thanks, 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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Good luck

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Mentor
Patty, Volunteer Mentor | @pmm | Aug 28 8:12am
In reply to @sheryl71 "No I have not maybe something I should look into didn't think of a neurologist Dr..." + (show)
@sheryl71

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.

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Hopefully, a good neurologist will help.
would you let me know how this goes for you?

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slkanowitz | @slkanowitz | Aug 29 2:42am

Since getting into the lab is difficult for your husband, I would suggest that you get the lab draws as home. Labcorp arranges for home blood draws and Dispatch is a medical service that comes to your home for illness, injuries and labwork. There’s a fee, around 35.00, but worth the convenience. I agree with others that monitoring the MGUS should be done at least yearly if stable.

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grrranny | @grrranny | Aug 29 3:36am
In reply to @slkanowitz "Since getting into the lab is difficult for your husband, I would suggest that you get..." + (show)
@slkanowitz

Since getting into the lab is difficult for your husband, I would suggest that you get the lab draws as home. Labcorp arranges for home blood draws and Dispatch is a medical service that comes to your home for illness, injuries and labwork. There’s a fee, around 35.00, but worth the convenience. I agree with others that monitoring the MGUS should be done at least yearly if stable.

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Thanks so much, Slkanowitz!
That would certainly be a convenience, because he also has to get bloodwork done twice a year for his rheumatologist who sees him for his rheumatoid arthritis.

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grrranny | @grrranny | Aug 29 3:59am

The update on hubby's appointment with the hematologist yesterday:
Because of a 1.3 M spike, she thought it would be a good idea for him to get an MRI to see if the two new vertebral compression fractures might have been caused by the underlying MGUS. An MRI would be also helpful for the upcoming appointment with his spine surgeon for consultation on pain management and whether to get a third and/or fourth kyphoplasty (because it has the potential to put too much pressure on the osteoporotic vertebra and cause further compression fractures). All that the spine docs have done so far was just the CT scan which showed the new fractures.
After the MRI and spine surgeon appointment, hematologist will make a decision on possible treatment and future bloodwork frequency. She also ordered a series of iron infusions for his chronic anemia. Hopefully, that will help with his being so tired all the time.
Many thanks to each and every one of you!

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slkanowitz | @slkanowitz | Aug 29 12:23pm

Since the MGUS labs and the rheumatology labs are both twice a year, it would be great to combine them and eliminate duplicate tests and have fewer pokes for him!
I think the MRI will be very helpful. It shows more detail than the CT scan. The iron infusions should help his fatigue and hopefully he will get help with the pain! The plan sounds good!

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1 reply
grrranny | @grrranny | Aug 30 3:49am
In reply to @slkanowitz "Since the MGUS labs and the rheumatology labs are both twice a year, it would be..." + (show)
@slkanowitz

Since the MGUS labs and the rheumatology labs are both twice a year, it would be great to combine them and eliminate duplicate tests and have fewer pokes for him!
I think the MRI will be very helpful. It shows more detail than the CT scan. The iron infusions should help his fatigue and hopefully he will get help with the pain! The plan sounds good!

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That would be great to be able to combine the lab tests, but the hematologist and rheumatologist are in two different practice groups with two separate labs.
We will at least ask about cutting back on the labs for the arthritis.
Thanks for your support!

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