Hi Ruth - Hope you get a quick response and recovery from your treatment.

Learn about MM and to Trust Your Labs. If you respond well, you're typically going to be told to get a SCT. If you return to Normal or near Normal Labs, ask Why.

There are people where they do not respond to treatment and relapse quickly. In these cases, a SCT is life saving.

But when a person responds, keeping your Immune System is a very valuable element of your future health.

I was 80% bad plasma, 5915 IgA, and t4;14 - All indicators of a poor prognosis. 6 weeks treatment, normal labs, at 12 weeks induction, I change to maintenance. 4 months later - I was Negative and without a SCT.

This last summer, I had a dormant lesion become very active. Somehow my Marrow was not involved. They say that's not possible, it doesn't work that way - I say my Immune System may have helped (it learns about pathogens that its recovered from). My high percentage of Natural Killer Cells may have helped. For sure my new Plant Based Diet and Key Supplements did help (all documented at @A MyMyelomaTeam Member).

We need their MM Meds but we need to stop before the Meds cause permanent damage. They typically only stop, after the damage is done and its too late.

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Congrats on being Negative.
Search for Dr Costa Master Trial

He did a Clinical Trial and concluded if you’re clonoSEQ MRD Negative and two or less high risk factors, that after staying Negative for a year, it’s Safe & Best to Stop MM Meds

Ask your Onc about the Master Trial.

@A MyMyelomaTeam Member It sounds like it's mostly a problem for smaller health systems in rural areas, which is extremely unfortunate. Thankfully and most gratefully, I've not had any problems like this and I live in a very rural Texas area, although I see doctors at a larger health care system in a city about an hour away.

I recently helped my mother-in-law switch from a plan w/a supplement to an Advantage plan, and she is saving hundreds of dollars each month, and she is still able to see the same doctors and get the same treatment at a closer hospital to our tiny town.

Each case is so individual and it pays to really shop around according to individual needs and factors involved.

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Hi DonnaAndrew - It's unfortunate that your insurance company is difficult to work with. If you don't mind - an Advantage Plan or Medicare AB + Supplemental ?

It's very interesting that your Marrow reports Positive but your Peripheral Blood is Negative. My guess is that you're producing so much healthy blood from all of your Marrow throughout your body and that your Daily Replacement of Peripheral Blood is not allowing the very low amount of MM Bad Blood to accumulate into anything that can be measured.

That's my WAG.

Do you have any understanding of how this can be ?

Hopefully, if this random effort were to produce any meaningful pattern of data, it could be presented to a MM Research Facility like Johns Hopkins (JH), that they might turn it into a Clinical Trial. The great news about a Clinical Trial is they would cover all of the costs of Testing.

When I presented my Lesion Recovery Report to my JH Onc, even though I had full weekly Labs and Imaging just weeks apart and a complete List of the Supplements I was taking, he responded - "Yes, but You're a Case of One". The amount of detailed Info I was lucky to gather is exactly what they would need to conduct a Clinical Trial.

It's a Long Road & Just beginning but I'm hoping something like this and my recent Lesion Event can nudge things forward.

I actually know of another person around my age (70) who had a very similar repair of his lesions from the use of the same Pre & Probiotics and a similar Plant Based Diet. His daughter works in some medical capacity and knew to have her Dad on these Pre & Probiotics for their ability to reset IL-17. I simply followed their lead and got very lucky to have the entire event Documented with Full Weekly Labs and Imaging.

My point about all of this is no matter how well One Case is Documented, they ignore it as Just One Instance. If this type of question gathered plenty data, they might be more interested to consider it as a better way to track and help us.

There's another member on this Forum that wants tracking of his MM by a clonoSEQ blood test but JH is currently saying No, since he has a very low MSpike. Yet, his last BMB is 2+ years ago. Since he's close enough, he may simply reach out to my Onc for that test.

@A MyMyelomaTeam Member

You just need to call your insurance company to confirm. That is what I just did. FYI, I too had ClonoSeq as part of my BMB during my original workup last year and my private insurance did cover that.

My insurance rep looked up the universal CPT® Code: 0364U (which you can use too to ask your insurance company for coverage). She said this is the code whether I do a BMB or a blood sample. So now I just need to convince my doctor to do this in lieu of my next BMB and PET which is coming due for me in May. The doctor's office would then submit a pre-authorization and my insurance said they will certainty cover it.

Fingers crossed ;-)

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