I am different. I don't mind the bone marrow biopsies that much. They deaden in inside and outside of my bone. Wait till the lidocaine takes effect. They use the little drill. They are very good at talking me through the process. I always look and make sure they have a good sample. The bone marrow biopsy tells more than just how many myeloma cells are present. It can detect other things as well.

@A MyMyelomaTeam Member Thank! I will take a look

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A MyMyelo...

@A MyMyelomaTeam Member I apologize, I am just now seeing your question, I never seem to get notifications of activity on this site, probably user error. LOL!

@A MyMyelomaTeam Member is correct, but in this scenario it is using the blood to test for M-spike and MRD. It is used in research at only a few labs in the U.S., not yet approved for clinical use by the FDA (hopefully approved soon) but when it is, will be a better way to detect MGUS or SMM to "head it off at the pass", so to speak. To get a sooner diagnosis to possibly stave off progression to full blown MM.

This is how I was diagnosed with MGUS, through https://www.enroll.promisestudy.org/ via Dana-Farber Cancer Center, Dr. Irene Ghobrial. I joined this study in memory and honor of my late brother, Paul, who had MM.

https://www.myeloma.org/mrd-mass-spectrometry-t... Scroll about 2/3 of the way down and it talks about mass spec testing. It sounds similar to clonoSEQ, I was just curious if anyone else had heard about it. I haven't had a baseline bone marrow biopsy yet, so I don't guess I could do clonoSEQ.

Hope this helps and sorry again for the delay.

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A MyMyelo...

A MyMyelo...

Home | United States | PROMISE Study: Researching Multiple Myeloma

https://www.enroll.promisestudy.org/

Spectrometry is where a chemical compound is monitored for concentration using uv or visible light. Visible light is broken up into wavelength by a prism or a grating. The compound has a specific wavelength it absorbs

Hi KLINTL

At their site - I see the Banner about FDA approved but just down from their, in the light Blue Box on the right, it says:

clonoSEQ is convenient
clonoSEQ blood testing supports serial MRD monitoring as a potential alternative to frequent marrow draws

https://www.clonoseq.com/myeloma/

In addition, Robert from this Forum has been particapating in their Clinical Trial for over 5 years (I believe). He finds his blood sample tests to track very similar to his BMB tests, and now that his BMB is Neg, so is his blood sample clonoSEQ results.

My Onc at John Hopkins(JH) recently told me that JH now accepts the clonoSEQ blood sample tests to be a valid way to Monitor their Patients. My Medicare & Supplemental are coving this cost completely, 4 times a year. With the blood sample testing, I get to see any new activity many months (up to 6 months) before it shows in my Labs as an MSpike or other infection markers of B2M, CRP, LHD, or my IgA levels rising (all indications of an Infection which is how active MM presents our the Labs).

The blood sample clonoSEQ is a very effective early warning system that tells me I'm no longer Negative and to get a PET/CT to locate the issue, if it can, and to start Treatment Meds - in my case, I will not exceed 3 months, provided I get an immediate response like I have these two time (2-1/2 years ago, and this last Sept.)

No Pain or risks that come with a BMB and info quarterly rather than annual - For me its a Win-Win.

I can not tolerate living on MM Meds. I was off them for 15 months. When I started Revlimid & Dex in Sept, the bone lesion was kill-off in a week - my Full Weekly Labs documented this and my Docs/Oncs agree but say they just don't understand.

We're always being bombarded with DNA mutations that can lead to cancer. I'm helping my body fend them off by not letting the MM Meds constantly beat down my immune system. Though part of what's helping is I never got a SCT. Recovering from my first event in 2021/2022 became part of my Immune System's defense system and staying off MM Meds for 15 months helped me to have 11% Natural Killer Cells that helped make my Sept 23' treatment so very effective.

I trust it, my Onc does, JH does, Medicare does - works for me.

Multiple Myeloma | clonoSEQ® MRD for Clinicians

https://www.clonoseq.com/myeloma/