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Myeloma, Party Of Two: Moonshots

By: Tabitha Tow Burns; Published: August 6, 2019 @ 12:53 pm | Comments Disabled

Here in “Space City,” we’ve been celebrating an im­por­tant mile­stone. It was 50 years ago when the unthinkable was accomplished, and we became a lunar people. On July 20, 1969 at 10:56 p.m., astronauts Neil Armstrong and Edwin “Buzz” Aldrin became the first men to walk on the Moon. With astronaut Michael Collins piloting the capsule, Houston Capcom monitoring the mis­sion, and more than half a billion people watching on television, Armstrong climbed down the ladder and proclaimed: "That's one small step for a man, one giant leap for mankind."

The total mis­sion duration of Apollo 11 was 8 days, 3 hours, 18 min­utes, and 35 sec­onds, but the work began eight years prior with an unthinkable pres­i­dential chal­lenge. How insurmountable must that goal have seemed at that time, especially given what tools they had to work with? Long before the digital age, home computers, or cel­lu­lar phones, we sent three brave men to the moon running on a computer processor that ran at 0.043 MHz. By contrast, the processor from my smartphone is running around 2,490 MHz. The Apollo 11 mis­sion was accomplished on the power of a small pocket calcu­lator!

Thinking about Apollo 11, I can’t help but think about whether we will achieve the goal before us. How long before we find a cure for mul­ti­ple myeloma? What tools do we need to sur­vive the mis­sion?

The last month has been a chal­lenge for my hus­band Daniel and me. Daniel’s cur­rent treat­ment of Empliciti (elo­tuzu­mab), Revlimid (lena­lido­mide), and dexa­meth­a­sone does not seem to be producing the re­­sults we need. In the beginning of the treat­ment, we saw im­prove­ment. His M-protein in Jan­u­ary­ was 1.8 g/dL (18 g/l), when Daniel began treat­ment, and it de­creased to 1.4 g/dL by Feb­ru­ary. In March, it stalled out at 1.1 g/dL, and it has remained there ever since. Between June and July, we saw an uptick in his free light chain ratios as well, so now we are con­sidering a change in strat­e­gy.

The first thing his myeloma spe­cialist rec­om­mended was returning Daniel to weekly treat­ments. With Empliciti, there is an op­tion to de­crease the frequency of the treat­ments after a period of time, so in March, Dan went from having weekly in­fusions to in­fusions every two weeks.  Based upon his labs, it would seem that he started losing ground around this time. What may have con­trib­uted to this devel­op­ment is the fact that Daniel was suffer­ing from bronchitis and pneu­monia during this period as well, so there were a couple of times he was unable to have his myeloma treat­ment.

We have been doing the weekly treat­ments again for the last sev­er­al weeks, so we hope to see some pos­i­tive re­­sults again. We meet with Daniel’s myeloma spe­cialist again in mid-September, and we will review the num­bers to see if any progress has been made. If not, we will be shopping for a new treat­ment.

The elephant in the room? Obviously, we wanted this treat­ment to last for more than six months. We were hoping to get at least a couple of years out of it before we had to burn through another line of ther­apy. After the induction ther­apy he had in March last year, the mobilization treat­ment he had prior to trans­plant, the stem cell trans­plant he had in Octo­ber, and this treat­ment he is taking now, I am beginning to feel like we’re fur­ther away from a com­plete remission than I originally thought.

When Daniel first became a myeloma patient, we were told that he was “average risk.” The chromo­somal ab­nor­mal­ity he had was t(11:14); he didn’t have any of the deletions that would in­di­cate he had high-risk myeloma. After so many failed treat­ments, we are at a loss as to ex­plain this diag­nosis or his lack of re­sponse to these treat­ments. It seems like a goal out of reach.

I wonder how many times the Apollo astronauts stood in their backyards and gazed at the Moon. Did they ever wonder if they would get there?  Some­times I feel that way. I wonder when Daniel will finally be in remission, a time when we don’t go to the hos­pi­tal every week for labs and treat­ments with their long waiting times and stressful pro­ce­dures, a time when we can travel like we used to and enjoy our hobbies again. It seems so far away.  I reach out my hand to touch the Moon, but all I’m doing is putting my fingers in front of it. I’m still thousands of miles away.

I’m sure many readers out there probably feel the same way. It’s hard to keep your eyes on the horizon and be hopeful, but hope is one of the greatest healers of the spirit, and it can be the impetus we need to take the next, small step for­ward.

That’s why I feel compelled to offer this en­cour­agement. If this 50th anniversary of the lunar landing has taught us any­thing, it’s that moonshots are not out of reach. If scientists could put a man on the Moon with the power of a calculator, surely they can cure myeloma in our time? I hope that is true, and I hope that Daniel and I will still have much of our lives to spend to­geth­er by the time they do.

To the myeloma re­searchers, med­i­cal providers, patients, and care­givers, I hope that we all con­tinue to take these small steps for­ward and that our progress will soon be rewarded.

Tabitha Tow Burns writes a monthly column for The Myeloma Beacon. Her hus­band Daniel was diag­nosed with smol­der­ing myeloma in 2012 and active (symptomatic) mul­ti­ple myeloma in 2018. You can view a list of Tabitha's pre­vi­ous­ly pub­lished columns here [1].

If you are interested in writing a reg­u­lar column for The Myeloma Beacon, please contact the Beacon team at .


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