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Is Anyone Using The HevyLite Blood Sample Test ? Is Anyone Getting Mass Spectrometry Blood Testing ?

A MyMyelomaTeam Member asked a question 💭

This is a better defined test of the Kappa and Lamda heavy and light chains

This test is available for all Ig types. It more accurate than SPEP and IFE

If so, where are you getting it from and is it covered by insurance

I’ll be looking into that and add to this Post

Mass Spectrometry Testing (MST) is a far more accurate way to test for MM activity but I think it’s only available at limited facilities

If you’re getting MST, where ?

May 8
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A MyMyelomaTeam Member

There are several mass-spec based blood tests being used but the challenge is availability. According to both my oncologists we should begin to see acceptance and availability increases in the next 12 - 18 months. The key for me is that these new tests are not going to change my current treatment plan. Therefore I can be patient.

May 8
A MyMyelomaTeam Member

Larry,
Have you noticed that the doctors who discover cures are the ones, who had a family member die of the disease? They had skin in the game. When they do, they stay on top of their game.

May 9
A MyMyelomaTeam Member

If you have myeloma symptoms or any problems that possible could be myeloma, GET TESTED ASAP and often. Was told I had smoldering myeloma, wait and watch, it would take 10 years before myeloma. Numbers kept rising and within 6 months was told I had active myeloma. No one has the luxury to wait on myeloma. You need to KNOW. See a real myeloma specialist. Learn about myeloma disease. Be an advocate for yourself. It's your life. Is your life important? If you are on this site, you are at the right place and you are thinking. Keep on thinking. Stay alive!

May 10
A MyMyelomaTeam Member

@A MyMyelomaTeam Member I recently wrote a question about mass spec in an earlier post, but I guess it got swept up under the pile.

I do get mass spec every 6 months by sending a sample to Dana-Farber Cancer Institute, Boston via the PROMISE study. https://www.enroll.promisestudy.org/ I found out about this study via an MMRF or IMF newsletter, I've followed along with them since my brother was diagnosed in 2001. It's for African American people or those with a family member that has MM. I also have labs and a visit at my local oncologist every 6 months.

The mass spec shows a low level of M protein, the SPEP's do not, but they are both pretty much consistent with everything else, like my high Kappa FLC's & K/L ratio. Back in 2022, it was my understanding mass spec was only used for research and not clinical applications, and not yet FDA approved. Today I believe it is FDA approved, https://www.biomerieux.com/corp/en/journalists/... , but only used at a few facilities because of cost. I would think if one goes to a facility that uses mass spec, that their insurance would pay for it, at least that is my hope. If it wasn't for MST, I probably wouldn't have been diagnosed with MGUS until it had already turned into MM and was much worse (if it does ever progress further, labs point in that direction).

@A MyMyelomaTeam Member I was told mass spec leads to earlier detection for changes in MRD or upon initial diagnosis. It's much more sensitive than an SPEP. It always detects my M protein whereas the SPEP's I've gotten do not show any protein (it's very low), but do show high Kappa FLC's and elevated K/L FLC ratio.

Home | United States | PROMISE Study: Researching Multiple Myeloma
Home | United States | PROMISE Study: Researching Multiple Myeloma
May 8 (edited)
A MyMyelomaTeam Member

Bill - As I watched a video on this, it looks like the HevyLite is checking the percentage of Heavy to Light to determine if it's a False MM condition that's being Reported by the less sensitive tests.

I'm definitely no Doctor but sadly, I seem to know much more about this than most I speak with. I'm constantly trying to learn to keep them on the straight and narrow - it's my skin-in-the-game, not theirs. They just collect the insurance payments.

May 8

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