Just when you think you’ve got this myeloma thing figured out, there’s so much to learn all over again.

Look­ing ahead, most of us have an idea about what we’d do when we start running out of FDA-approved drugs to help us: join a clinical trial. And there are literally hundreds of them for multiple myeloma patients.

So no worries, right? Simply pick one from column A, B, or C, and away we go. Hopefully, our doctor can help us find one that is likely to work for us and re­cruit­ing patients close to home. After all, that’s what clinical trials are designed to do; help us live longer.

So why should I be surprised that sometimes it isn’t as easy as it sounds?

Have you had an allogeneic (donor) stem cell transplant? Sorry, most trials won’t let you in. Others exclude patients that have had two or more autologous stem cell transplants.

Are you a nonsecretor like me? Very few trials make allowances for us. Too tough to measure and stan­dard­ize results, I guess.

Trouble is, the number of nonsecretors is increasing. It turns out that many late-stage myeloma patients be­come nonsecretors over time. Apparently, older myeloma cells tend to secrete less measurable protein.

Ironic, isn’t it? More and more patients are being excluded from trials at a time when there is a shortage of participants; researchers are begging for more. And, by excluding patients like these, many trials are in­ac­ces­si­ble to those of us who need them most.

There are a few, outside-the-box, long-shot trials that allow one or more of the above categories to join. But, if you guessed they tend to be the ones least likely to help us most, you’re right.

I did learn about a new trial that may allow nonsecretors from a doctor at the Mayo Clinic in Jacksonville the other day. But it is only a Phase 1 trial, meaning the primary goal is to determine the safest and most effective dosing, not necessarily keep patients alive.

Get me in a Phase 2 or 3 trial, featuring one of the new immunotherapy drugs! But so far, I’m out of luck. I have been considering a modified allo trial, using engineered T-cells. But I’m concerned about the time com­mit­ment needed to do an allogeneic trial (three or four months away from home), as well as being limited from accessing more trials in the future. Also, it’s risky. The approach may minimize graft-versus-host disease (GVHD), which should make the transplant safer. But many myeloma experts believe there needs to be some graft-versus-tumor effect (which goes hand in hand with GVHD) in order for an allo to control multiple mye­lo­ma.

Which brings me to the million dollar question: Assuming a patient can get in to a trial, how will we know it’s the right trial for us?

Not having enough choices isn’t good. But too many options can be problematic, too. If you are fortunate to qualify for several different trials, how do you know which one may work best and help you most? Patients need better direction as to which trial to pick. Select the wrong trial near the end, and you may not get another shot.

May I make a few suggestions?

First, include all myeloma patients in clinical trials. It seems silly to exclude any late-stage patient from a trial. Researchers, drug companies, and patients need all the help they can get!

Second, our doctors need to be more knowledgeable about which trials may help us most. It shouldn’t be as difficult as it seems. If we’ve had a good (or not so good) experience with one or more drugs from a particular class, start there. I managed to locate several different clinical trials that seemed like good fits. For example, one used an FDA-approved drug that I hadn’t tried yet as part of the control arm, combined with an ex­per­i­ment­al im­muno­ther­apy drug I’d heard good things about in the experimental arm. Either way, I win! Un­fortu­nate­ly, that’s before I learned I didn’t qualify for this and so many other trials because of the nonsecretor thing.

Third, trial-related expenses should be covered for trial participants. I had been led to believe that my medi­cal expenses would be covered after I enrolled in a clinical trial. Not always true!  Remember the modified allo trial I referenced earlier? Researchers expect the patient to pay for the transplant – that’s the most ex­pensive part. The trial will pay for modifying the donor T-cells to be injected back into the patient, but not the transplant itself.

We all understand that our healthcare system isn’t perfect. Un­fortu­nate­ly, neither is the way clinical trials are designed and enroll patients. Here’s hoping that more trials will begin accepting a wider variety of patients, providing better direction for when and why a patient should join, and paying for their trial-related expenses.

Clinical trials serve a dual purpose: to help bring new and more effective drugs to market, and to help save patients’ lives. Here’s hoping that researchers don’t get so caught up in selection criteria and the numbers that they forget about the life-saving part.

Feel good and keep smiling!