Came back to add: my SMM isn't considered high risk. It may be that starting treatment at the smoldering stage may be worth it if your smoldering MM is considered high risk. Ask your MM specialist. All the best.
While the search results don't specifically mention participants in the Aquila trial, they do show that 28 MyMyelomaTeam members have reported participating in clinical trials for myeloma treatments. Clinical trials can provide access to new treatments and combinations that aren't yet widely available.
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Hi Kim. My MM specialist didn't have a good opinion about the Aquila study.
1) The risk of secondary malignancies due to treatment is too great when weighing it against the better odds of the SMM NOT becoming active (he estimates that, given my particular case, my chances of progressing to active MM is only 30%).
2) IF the SMM still becomes active after having endured treatment when it was still smoldering, the myeloma may have become refractory to that particular treatment by the time it becomes active, thereby rendering the treatment useless by then. One less option for treatment. Thinking of an example that may be more relatable - if someone takes an antibiotic needlessly, especially long-term, when they DO eventually get an infection that requires that particular antibiotic, the bacteria may have already become resistant to that antibiotic.
3) My particular circumstances are such that my numbers are somewhat stable, and it seems my body is dealing with the situation without intervention, keeping the myeloma in check. It may be if we start tinkering with treatment, my body may lose the ability to keep the status quo thereby increasing the odds that it does become active.
4) If we don't intervene and my SMM progresses to active MM, it may be so far in the future when better treatment options are available (maybe even a cure - fingers crossed). Why endure the toxicity of treatment now, when it may not even be necessary?