I don't have the 17p deletion on my bone marrow either. But both my doctors tell me it's still there. Once high risk always high risk. A single plasmacytoma is much easier to treat than systematic myeloma that is in over 95 % of one's marrow for example. Most myeloma patients with high risk genetics need maintenance to keep the clones in check so they don't mutant and become harder to treat. I'm glad you are doing well, but we all have a different myeloma. That needs to he treated differently. Standard risk myeloma can become high risk, high risk myeloma is always high risk.

When you can, I'd recommend a blood test to see what's in your circulating blood. We replace our peripheral blood every 30 to 120 days. Twice, my Labs have shown I've done so within 42 days.

With a Doc or Onc printed Work Order:
Natural Killer Cells - Quest Code 37088 - CPT Code 86357
Omega 3 / 6 Ratio - Quest Code 91001 - CPT Code 82542

Hi Paula - I think it’s an important question to ask why only 4% NKCells. If I remember correctly, you’re not taking any MM Meds.

Are you taking any meds for other things?

Is the test for your NKCells from a blood test and either the CPT Codes I’ve provided or by some other means?

I feel the more you can raise them, the better your odds of delaying your progression, or at least being resilient against infections. Though there’s no guarantee there’s plenty of reasons to expect such a low level is problematic.

@A MyMyelomaTeam Member YOU ARE NOT DOOMED! 😁 There is no "right" way to treat Myeloma or any other cancer or any other disease. We are all learning as we go and trying to make the best medical decisions for our own body. Even doctors are only "practicing" medicine, so no doctor or hospital has all the answers either...despite how much we'd like them to know everything. What I have come to learn with Myeloma, is that this particular cancer (how it is treated, how it impacts a body and bone marrow, options for treatment, response to treatment, etc.), is SO VASTLY DIFFERENT for each individual. What works well for one may not work well for another, which makes this especially challenging to manage. In addition, the medical community treats patients based on history and experience...as they should. However, the tough aspect about our cancer is that there has been GREAT strides in treatment options over the past 10-15 years (gosh...even in the past 5 years), but much of the guidance on nccn.org (which is the site most oncologists use to determine how to treat various cancers), is based on older data. For instance, a few years ago IGA was considered a high risk factor until more recently when they discovered the high risk impact of cytogenetics (now the immunoglobin type caries less importance in relation to risk). That said, by the time I finish this response, I have no doubt it will be TOTALLY outdated and there will be new or additional high risk factors that have been discovered...along with new treatment options, diets to follow, etc. If Darzalex is working for you, keep charging forward!

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I have accepted that I will always be high risk regardless of the outcome of treatments. There are plenty of high-risk patients that outlive standard risk patients. It just means you probably need a different type of treatment & may not respond to all treatments. But even standard risk patients can't tolerate all treatments because of side effects. There is so much more to this than high risk & standard risk. There is age, health & access to the latest treatments also.