[Concerned....]

Should we request additional testing for myeloma?

by Concerned.... on Sat Dec 13, 2014 10:06 am

Hello:

My husband had a brain x-ray to check coils from a prior brain embolization, then a brain MRI to check for atrophy and/or a cause of memory loss. The radiologist reported normal and no cause for memory loss, but the family physician reviewing detected a skull lesion and ordered a full body bone scan for multiple myeloma.

In speaking with a local NCI facility, the bone scan is not a test that they would run, but specific lab tests, 24-hour urine, skeletal survey etc. He had routine lab work this week due to being a transplant patient. The CBC was actually better than his CBC in September and his renal panel was good except for a high BUN of 30. The NCI has contacted me wanting reports etc.

My concern is are we over reacting, or since a lesion was seen on the skull should we proceed with the submitting the scan reports and additional testing to the myeloma team for review?

Due to transplant drugs he is at higher risk for cancer. Additionally he has lost 10 pounds for no reason this year and his body mass is trending downward noticeably since September. He did have a "pass out" incident for no reason and has to take medicine to keep his blood pressure up as it is too low.

There was suspicion of cancer this summer during a parathyroid/throid surgery which came back benign.

Your thoughts?
Concerned

[Multibilly]

Re: Should we request additional testing for myeloma?

by Multibilly on Sat Dec 13, 2014 8:54 pm

Hi Concerned,

Well, you are right that a bone scan is not the right kind of test to look for multiple myeloma lesions. And a CBC can't be used to detect multiple myeloma either. At a minimum , you would ask for would for an SPEP, IFE and a 24-hour urine test, which are all pretty simple and inexpensive tests. A more complete set of lab tests would be the ones listed under the "Laboratory Tests" in this link.

http://myeloma.org/pdfs/IMF-U-TestResults-2011_f1web.pdf

Usually, if there is a suspicion of multiple myeloma, one first gets the various serum/urine lab tests done, and then based on those results, you would proceed with imaging such as a PET/CT scan and a bone marrow biopsy.

I'm not a doc ... but given there was a skull lesion detected, I would at least follow up with some of the basic lab tests under the guidance of a multiple myeloma specialist. Hope this helps a bit.

[Anonymous]

Re: Should we request additional testing for myeloma?

by Anonymous on Sun Dec 14, 2014 3:32 pm

I disagree. A CBC test is very useful to check for myeloma, as myeloma causes specific blood changes and a CBC test would pick it up.

For me, CBC is what finally led to my diagnosis. I was very anemic (low red count) and had very elevated protein levels. Yes they are not myeloma markers specifically but a smart doctor put two and two together and then order the M protein tests which are specific.

[Multibilly]

Re: Should we request additional testing for myeloma?

by Multibilly on Sun Dec 14, 2014 4:28 pm

Anonymous,

Please be clear only about 30-60% of patients with multiple myeloma present with anemia at the time of diagnosis.

"Experts Develop Guidelines For Treating Anemia In Multiple Myeloma Patients (IMW 2011)," The Myeloma Beacon, May 23, 2011.

Every one of my CBC markers read in the normal range.

My point is that your really need a suite of serum/urine tests to detect multiple myeloma and that one can't rely on only a CBC test for this purpose.