Myeloma, Party Of Two: Moonshots
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.
If you are interested in writing a regular column for The Myeloma Beacon, please contact the Beacon team at .
Hi Tabitha,
I am really sorry Daniel has had such a rough time since he was diagnosed with active myeloma. As I have dealt with myeloma over the last few years, the one thing that has become clear is the randomness of it all. Some people get complete remissions and relapse quickly, others have a partial remission with stable disease for a long time. Never mind the randomness of who gets the disease to begin with. Though we all hope to be MRD negative at some point, none of us can really do much to affect our outcomes. I follow doctor recommendations and stay hopeful, but cancer is an inadequately understood biological process that marches forward on its own timeline regardless of my best efforts (or lack of effort some days
lol).
I think all we can do is enjoy every day as best we can. Live every minute. Know that you and Daniel are good people and that we are all thinking of you and rooting for you. There is always hope - the next agent they try may be THE ONE.
Best wishes
Tabitha,
I pray that they can find treatment that Daniel responds to without nasty side effects. There are still more tools in the tool box. I don't know if he has tried Darzalex, but many patients who have relapsed have responded well to it.
Dear Tabitha, We live in a time when people walked on the moon! That alone is a miracle of modern science. Scientists and medical people also have turned inward into the mysteries of cell biology, and as myeloma patients many of us have been beneficiaries of that. There is more discovery and research going on now than ever before.
I hope also that Daniel finds the right drug regimen to help him get to closer to a remission. At least it looks like his disease was 'stable' recently and upcoming tests may show a decrease in the monoclonal protein. Many patients including myself are living with a 'stable' sort of disease, not a complete remission but something manageable. Best of luck in the autumn with the results.
Thank you all for your kind comments. Lynnae, you are right. Yes, time marches on with myeloma, and yes, it's so important to live each day in hope! We're right there with you!
Ronald, it's interesting that you mentioned Darzalex. I'm very curious if it will be the next choice if Daniel goes off this current treatment. We have discussed it with his myeloma specialist before, but we were told that Darzalex is something that he could go on later and still expect reasonable treatment efficacy, whereas the Empliciti might not be as effective after exhausting many lines of therapy. The thought was that we'd try the Empliciti while we could and go to other options if it didn't work. It sounds like Darzalex is working for some, however, so I think it's worth more discussion. Thanks for the recommendation!
Nancy, thank you for your inspirational comments. It is awesome to think what scientific advancements we've made in so many areas since 1969. Multiple myeloma is certainly no exception. There are many more drugs to explore as options for treatment now. When Daniel was first diagnosed with smoldering myeloma, Revlimid was the latest and greatest drug. How far we've come since then! Hopefully, we will see more advancements that will bring you and Daniel both the treatments we're looking for a lasting complete remission!
Best wishes to you all. Thank you again for your kind thoughts, prayers, and support!
Tabitha,
I’m sorry Daniel hasn’t found the drug or combination of drugs that will stabilize his myeloma. When I first was diagnosed with this disease, my oncologist told me it was the best (?) cancer to have, as scientists were making lots of progress in finding a cure. I cling to that, as it gave me hope as I began this path, and it continues to give me hope as the journey continues. Never give up! They will find something that will work. I’m sure of it! You’re right. If we can put a man on the moon, then we can certainly find a cure for our disease. I just learned yesterday from my oncologist that he believes in 2020 the FDA will approve CAR T-cell therapy for multiple myeloma patients! I think that might be the biggest ray of hope out there! Hang on!
I hope you know from all the comments that you and Daniel are not alone. We all have had and are having our individual challenges. Enjoy the good days!
Patty
I was diagnosed two years ago at age 79 when I sneezed and broke two ribs. Went on the "RVD lite" version of Revlimid, dexamethasone, and Velcade. The Velcade worsened existing neuropathy so that was discontinued after a few months, but my lambda light chain marker numbers continued down to 29, just above the 26 high normal (although I understand that for my age, 50 is a good normal). That worked for 11 months until the numbers started rising.
So I began treatment with Kyprolis, but that gave me dangerously high blood pressure spikes, so I went off that and on Empliciti (plus Velcade and dex). After an initial drop to 92, it just seemed to feed the myeloma, taking my numbers up to 230 (my lambda light chain at diagnosis was 269.)
So off that and on to Darzalex, which initially brought my numbers down to 89, but in a month (after a break caused by a bout with pneumonia) up to 160, and 313 a month after that, and taken off Darzalex when it hit 363 last month. Tomorrow I start a "tried and true" old regimen of Cytoxan (cyclophosphamide), dex, and a Velcade injection. It's my last roundup.
What I have learned from the columns and forum here at The Beacon is that everyone reacts differently to the different treatments, so I wish you both lots of luck. What I have learned from 31 years of sobriety is to live one day at a time, and to find the joy in that day, because it's there – as you have with the moon landing anniversary. I can read, and write, and help with some chores on our oasis in the Sonoran Desert, and be constantly amazed at the wildlife our habitat attracts, like Mom and Dad great horned owls overseeing their two young ones learning to move around a big mesquite tree. I don't expect to live long enough to see a cure for myeloma – when I was drinking I never expected to live this long! – but I do hope to see more amazing wildlife and to read more good books.
Abrazos, Albert
I echo the thoughts of those above. I hope that Daniel's doctors can find the treatment that works for him! Take care and thanks for writing so openly and honestly.
Dear Tabitha - I know it must be agonizing for you and Daniel to go through all these various treatments and not achieve the results necessary. As several have noted before me, there are lots of treatments for myeloma out there and they just need to find the one that works for Daniel. You both are so strong and have endured so much. If we can make it to the moon, we can cure myeloma. It takes all of us - medical professionals, patients and caregivers pulling together to get this job done. My husband is on Revlimid, dexamethasone, and Empliciti (elotuzumab) right now, and when that stops being effective, he will be ready to try something new. I pray that your medical team finds the right treatment for Daniel.
Tabitha,
I love your columns and great allegories!
I'm sorry Daniel is having such a hard time with treatments, and I hope something works very soon and stays for a very very long time.
Just to be a devil's advocate: I remember he was smoldering for a long time, correct? Did he start treatment because he became symptomatic? Was there absolutely no question that treatment should be started?
What if you stop now and see what happens? It's just his body does not seem to respond to the drugs with all the side effects, but if you stop, is there a way the body finds a way to fight the monster and keep the myeloma stable?
Probably amateurish, but really wishing you the best!
Thank you, all for your thoughtful comments. Patty M., I remember that we heard the same thing from Daniel's myeloma specialist when he was diagnosed. We are truly living in the age of cancer advancement, and that is especially true for myeloma! Our best wishes are with you as well. May a cure be around the bend for us all!
Albert, thank you for sharing your story with us! Wow! It sounds like you have certainly seen some of the up and downs that myeloma has to offer. You are so right, this is such an individualistic disease. Taking it one day at a time is key!
Susan and Patty B., thank you for your kind words of encouragement! I appreciate our positivity and well wishes. It certainly makes these rough patches better to know that we have such support around us! Patty, I sure do hope that your husband can benefit from Empliciti, Revlimid, and dex for a long time! Here's to continued his success!
Dimamar, thank you for your question. Daniel was diagnosed with smoldering myeloma in 2012, but after he developed additional CRAB symptoms last March (specifically, bone lesions), he began induction treatment in preparation for a stem cell transplant that would take place in the fall. Through regular monitoring of his labs and MRI/PET scans, it was determined that he needed to be on maintenance therapy to bring him into remission and keep his myeloma from growing. While many patients are able to achieve a partial or even a complete remission after induction therapy or a stem cell transplant, some patients do not achieve the desired result and may undergo a more stringent maintenance treatment in order to stop the cancer growth and reach remission, as my husband is doing. Myeloma is tricky business, and as Albert noted, the way it grows and reacts to medicine can be very different from person to person. It sure does keep researchers on their toes!
Again, thank you everyone for your well wishes and comments. I hope that we'll have good news to report next month!
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