My oncologist's nurse told me yesterday that I'm not eligible for this blood test. She said it's not because of my insurance coverage so could it be the stage of MM I'm in? Maybe it's just not available from this medical center and she just can't tell me that. I'm going to ask about it at my appt. next week, but I'm curious, now. Is there a another reason I am not aware of?
I have had a Cloneseq test on my bone marrow biopsy 8 or 9 times. Emory did have to eat the cost for 1 of my tests that Anthem wouldn't pay for. Now Medicare pays for them. No problem with payment so far.
As regards - The test requires a minimal baseline identification ( Clonality ID). before tracking MRD assessments -
When your Onc/Doc sends for your First Blood Sample clonoSEQ MRD Test, the clonoSEQ company (Adaptive Biotechnologies) will reach out to the hospital to retrieve an Archive of your Original Bone Marrow Biopsy (BMB). They use this BMB to identify the Genetics of your specific MM. In my case, they found two strands.
This original Genetics Map becomes your Baseline. Then they'll take your Submitted Blood Sample, with this request, and look at your Peripheral Blood to see how many Cells per Million, of your Specific MM Strands are found.
If they find None Per Million for All of your identified MM Genetics, then you are MRD Negative - No Discernable Cancer.
Why to get it Quarterly: (Yes, it's covered by Medicare and the Supplemental Policy)
When I had my Bone Lesion Event in late 2023 (treatment in Sept 2023), my April 2023 Blood Sample clonoSEQ reported 6 Cells per Million. This was months before any of my MM Markers showed Any Activity of that Bone Lesion.
Then after starting on Sept 2023, Revlimid, Dex and two DarzFasPro shots (one each on week two and three of treatment), by 6 Weeks, when I had No MSpike and that clonoSEQ from the 6 weeks Labs showed that I had returned to MRD Negative at 10 -6 (none per million). At that time, I discontinued All MM Meds. Now 2-1/4 years later, I continue to be on No MM Meds and my Quarterly Blood Sample clonoSEQ tests remain as MRD Negative.
A last note:
If you ever Relapse and a new Bone Marrow Biopsy (BMB) has 5% or more Bad Plasma, be sure to have the clonoSEQ people retrieve an Archive of that new BMB for them to Setup a New Baseline. This is required in case your Relapse has mutated your original MM Genetics. Once you have a New Baseline, they'll use it for all Future Blood Sample clonoSEQ testing.
@A MyMyelomaTeam Member Thank you for suggesting that, it would be nice if it worked that way! I was aware that ClonoSeq required a baseline BMB and have kept that in my memory bank and have since learned there are two doctors that come to a small town near me (from a large hospital system in Dallas, TX) that utilize CLonoSeq testing. Good to know!
And thank you as well, @A MyMyelomaTeam Member for the always great info! I do get Mass spectrometry testing through the Promise Study @ Dana-Farber, it is way more sensitive than SPEP, so I guess it's better than nothing at all since I've yet to get a BMB.
"Mass spectrometry (MS
) is significantly more sensitive than gel electrophoresis (like SPEP/UPEP) for detecting specific proteins (like M-proteins in plasma cell disorders), capable of reaching sub-nanogram or even picogram levels, whereas electrophoresis often struggles below nanogram/microgram levels, allowing MS to find low-abundance analytes missed by traditional methods and better distinguish therapeutic antibodies. While standard electrophoresis offers good general screening, advanced MS techniques, especially when coupled with separation (CE-MS), provide dramatically improved detection limits, sometimes 10-20 times better, and higher specificity for complex samples.
Key Differences in Sensitivity:
Electrophoresis (SPEP/UPEP): Often has detection limits around 0.1-0.5 g/L (grams per liter) for M-proteins, better for higher concentrations.
Mass Spectrometry (MS):
MALDI-TOF-based MS: Can reach below 0.015 g/L (milligrams per liter) for free light chains.
Capillary Electrophoresis-MS (CE-MS): Can detect proteins at femtomole to attomole (femptogram/attogram) levels, which is vastly more sensitive for single-cell proteomics.
Why MS is More Sensitive:
Direct Detection: MS measures the mass-to-charge ratio of ions, offering high specificity and sensitivity without relying on complex staining or labeling.
Ionization Efficiency: Advanced ionization sources (like nanoESI) efficiently convert molecules into ions for detection.
Coupling with Separation: CE-MS combines the separating power of electrophoresis with the detection power of MS, allowing for identification in complex mixtures at extremely low concentrations.
When MS Excels:
Monitoring low levels of disease during treatment.
Detecting light chains that might be missed by serum electrophoresis.
Distinguishing between disease-related proteins and therapeutic monoclonal antibodies."
If you’re not on Treatments then this clonoSEQ is very important to get. It’s far more sensitive than a MSpike or any other Labs that your Onc/Doc can provide, other than getting a Bone Marrow Biopsy which is far too invasive and typically only done once a year.
Since I get this clonoSEQ Blood Test Quarterly, I’m able to see any new MM Activity long before it will show up in any of my Regular MM Labs.
greetings from Alaska I get a Clono SEQ every three months and it gives the doctor and myself a good overall view of how the medication is working and suppressing the myeloma. I know some doctors don’t use it because the guy in my support group sees someone else and he doesn’t know anything about the Clono SEQ. I requested this test because it gives you good information. have a great day.