Picture this

Highly sensitive imaging can be performed to identify myeloma lurking inside and outside bone marrow.

As I wrote in my last column, I recently learned that I am MRD negative.  There are a few different test methods to detect minimal residual disease and the prognostic value of the tests varies with the testing method employed.

In my case, after doctors withdrew a sample of bone marrow from my hip it was assessed using next-generation sequencing (NGS). As I understand the process, an older marrow sample is used to identify the DNA of my original myeloma cells. The assay then looks for that DNA sequence against millions of cells in the newly extracted marrow, in my case 2,922,325 cells.  If no cells with matching DNA are detected there is no minimal residual disease and the patient is said to be MRD negative.  

It is possible, however, that sequencing of the cells from a marrow sample may not detect all residual disease because myeloma can appear outside the marrow.

A PET/CT (Positron Emission Tomography)/(computerized tomography) scan is an imaging technology that allows doctors to “see” areas in the body where multiple myeloma has caused tumors in soft tissue and/or congregated in the marrow.  While sensitive analysis of the bone marrow can detect MRD inside the marrow, a PET/CT can detect minimal residual disease inside and outside the marrow. This is called “imaging” MRD testing.

To perform a PET scan a radioactive sugar is injected by IV. The sugar travels in the body normally and creates a “tracer”. When the patient is scanned about an hour after injection, images of the distribution of the sugar are obtained. Because cancer cells use sugar at a higher rate than normal cells they appear as “hot spots” in the images. The PET scans are merged with the CT tomographic x-rays, cross-sectional images of anatomical structures, to show doctors with great specificity the existence and location of cancer cells.

It is well accepted that patients that achieve a deeper response to treatment are more likely to enjoy longer progression-free and overall survival. So it follows, achieving MRD negativity, the deepest response that can currently be measured, is a good prognostic predictor. While it seems logical, research last fall concluded that patients that are both MRD negative in a bone marrow assay and imaging analysis have statistically improved progression-free and overall survival.

The PET/CT is an interesting test, but generally not too uncomfortable unless you are claustrophobic or have trouble being still for long periods.

To start, I began fasting six hours before the test and couldn’t exercise in any way. Exercise “fires” up the muscles and changes the way the muscles metabolize sugars, and that would throw off the scans. Presumably eating causes a similar issue. The fasting was a challenge, but I didn’t have much trouble sitting idle all morning and watching television.

When my appointment began I was injected by IV with a radioactive glucose solution.  I didn’t feel anything, but I was suspicious when the nurse pushed herself away from me as we continued our small talk. When the injection was complete I was told to relax and not move around for forty-five minutes to let the tracer fluid distribute through my body. I heard “take a nap” and I always follow directions.

I was called back to the scanning room and directed to go empty my bladder as best as possible. “Be careful not to get urine on your hands, it’s radioactive. Wash up well when you are done.” Encouraging instructions, I’m sure this is all safe.

 Lying flat on my back, my head in a U-shaped pillow, the bundling process began. A large rubber strap was placed around both arms at my biceps, the weight of my arms against the strap holding them in place at the sides of my chest. My toes were similarly bound to keep my feet and my legs from rotating outward. Having my arms and legs thoroughly secured, I was swaddled head-to-toe in warm blankets. This was welcome as the room was frigid.

Now resembling a mummy, the slab I was on moved back and forth, foot to head, through the large round scanning machine. It’s a bit like being passed through the hole of a giant donut.

Before the scan started the technician explained the procedure and emphasized that if I moved we would need to start over.  The scanning process was easy. I tried to relax as best I could, listened to the music in the room, and tried to ignore the desire to move around. Of course, as we started I experienced an uncontrollable urge to cough. Thankfully, about 30 minutes after we started the scans I was informed they were complete and “useable.”

I was sent home to await the results. Unlike the cellular assay, when I expected the tests to detect at least some minimal residual disease, I hoped the PET/CT would confirm the earlier MRD negative findings. The PET/CT found “No abnormal osseous or extraosseous radiotracer uptake to suggest viable myelomatous involvement.” 

In other words, the doctors were unable to identify any minimal residual disease in either the assay or imaging. Time to take a breath and savor another victory in this long journey.

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Photo Credit: © 2010 Mark W Pouley

“Morning Calm” was 0ne of the first photos I captured when I recognized something special and needed to share it with others. The photo was taken very early in the morning on North Twin Lake. “Mirror” images are a common tool for photographers, showing the real and the reflected. By capturing a moment in time we get to see what the eye sees naturally as well as a fleeting hidden image seen only when the waters are calm.

Welcome to the Myeloma Roller Coaster

Living with multiple myeloma is full of ups and downs, twists and turns and surprises. For me an unexpected twist has led to a very happy place.

Welcome ladies and gentlemen to one of the scariest rides of our generation. It will bring you to the highest point only to drop you down at unimaginable speeds. You will enter turns you never see coming and remain breathless to the very end. Welcome to the multiple myeloma roller coaster.

When last we spoke, I was celebrating three years post-ASCT and preparing to pare back my aggressive 3-drug maintenance regimen to something more manageable. I looked forward to a return of precious time to me and my family.  Since that column, the plan shifted to more testing and continuation of the same treatment regimen.

The good news is that my general health remains outstanding with no apparent changes in my myeloma. Regular blood tests continue to register no measurable monoclonal proteins, my free-light chains are normal, and my other blood counts and kidney functions are good for a person taking regular chemotherapy medication.

My physical health is strong, in fact, we ended the summer with a fabulous family vacation to New York and I wrapped up the year attending two-week-long conferences in Minnesota and Tulsa with several hundred colleagues. 

Shortly after writing my last column I met with my doctor, but the conversation didn’t go as I expected. Instead of suggesting a reduction in treatment, he said he wanted to continue the three-drug regimen indefinitely. The reasoning was understandable, given my high-risk cytogenetics, but it was still a big disappointment.

Approaching this meeting I felt I’d achieved an unexpected turning point in my myeloma journey. The treatments had gone so well that I was considering an even greater return to my pre-diagnosis life. While that was always my hope, I didn’t know if it would happen and reaching that point was cause for celebration. While not intended, the conversation with my doctor tempered the celebration.  Wrongly or not  I felt a level of defeat.

More realistically, it all comes down to the risk of relapse. All myeloma patients have the same goals; find the best method to forestall a relapse as long as possible, and be prepared for a relapse of myeloma that is more difficult to fight than the prior incarnation. For high-risk patients like myself, the goals are the same, but the chances of a harsh relapse are greater.

My current treatment has achieved complete response for a substantial time and there are no current signs that is about to change. I’ve tolerated this level of treatment extremely well. The theory, as I’ve been told, is “if what you are doing is working keep doing it, otherwise do something else.” Because the disease could return more aggressively and may not respond as well to the next treatment there is great value to preserve the progress I’m enjoying today for as long as possible.

My doctors and I both recognized we needed more information to make this decision. On my doctor’s advice I underwent another bone marrow biopsy in November 2019, but this time we would test for minimal residual disease (MRD). With a regular blood test, doctors can identify one cancer cell in up to one-hundred thousand blood cells. By contrast, MRD testing can identify one cancer cell in one million blood cells. Because it requires a bone marrow biopsy and it is more costly than blood testing, MRD testing is not regularly prescribed. Myeloma professionals also still debate the value of MRD testing as it relates to treatment decisions for individual patients.

Because the testing requires such precise measurements I waited sixty days for the results. I was not expecting that length of uncertainty, but I tried to temper my expectations. Given the current science, being MRD negative, finding no minimal residual disease, is still fairly rare and a bit of a milestone. During my wait, I assumed I was MRD positive (there must be a monoclonal cell hiding somewhere). I felt it was better to expect the “worst” and be surprised by the best.

I finally received my MRD test results on January 15, 2020 (a whole decade after the procedure). I was shocked and ecstatic to learn I am MRD Negative.

My first reaction was surprise. Perhaps because I’ve conditioned myself to be hopeful, but not overly optimistic I didn’t expect this result. My second response was to feel validated. At least that’s the word that comes to mind. I’ve felt healthy and “normal” for a long time, but knowing I had multiple myeloma and all that goes with it I figured it was a bit illusional. While I know MRD Negative doesn’t reflect any sort of “cure”, and I remain vulnerable to relapse and all the attendant risks of myeloma, at least for this moment there is no myeloma. I’m feeling healthy because there is no cancer. I’m not fooling myself, I deserve to feel good.

I have a new appointment to have a new conversation with my doctor. We may decide that some level of treatment will continue, but I won’t be disappointed this time. I have proof that all the work and effort is paying off. I have cause for celebration, but I’m not letting down my guard. 

A lesson learned from my myeloma journey is to not allow myself to get too high or too low. Since my diagnosis I’ve been up and down the roller coaster enough times to prepare for the next big turn or drop. For now my arms are raised high, I have a big smile on my face and I’m ready for whatever comes next. 

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Photo Credit: (c) 2019 Mark Pouley.

My family closed out 2019 making a trip to New York. For a week I set aside being a myeloma patient as we went all-in as tourists enjoying all the sights, sounds, and tastes of the “Big Apple.”

Anniversary and decision point

Celebrating the three-year anniversary of my stem cell transplant brings new choices about treatments and the possible improvement in my quality of life.

Today, how­ever, I’m still enjoying a com­plete response and rel­a­tive­ly good health with remarkably few side effects. My perspective on the future also is much brighter, and three more years of good health doesn’t seem like a stretch anymore.

Much of my current success is due, I believe, to the aggressive main­te­nance treat­ment I have been receiving. This third anniversary is not only cause for celebration of 36 months of pro­gres­sion-free survival, but it also raises a de­ci­sion about how to proceed.

A quick review of my history lays the groundwork for the de­ci­sion I face this fall. I was diag­nosed in 2015 with “high-risk” multiple myeloma due to the presence of the del(17p) chromosomal ab­nor­mal­i­ty. I was initially treated with Velcade (bor­tez­o­mib), Revlimid (lena­lido­mide), and dexa­meth­a­sone, which proved ineffective. I moved on to Kyprolis (car­filz­o­mib), Pomalyst (poma­lido­mide), and dex (KPD), followed by an au­tol­o­gous stem cell trans­plant. At 60 days post-transplant, I had achieved a nearly com­plete response and had to decide whether and what main­te­nance ther­apy to undergo.

July 22 marked the third anniversary of my au­tol­o­gous (own) stem cell trans­plant. Honestly, although the treat­ment went well, when I was sent home, three-years in the future seemed like a very long time away. I wouldn’t have been surprised if a relapse had arrived before this day.

If I’ve learned one thing about multiple myeloma, it’s that it can be uniquely personal in the way it develops and affects a patient, but more so, how it will react to treat­ments. Maintenance ther­apy, it seems to me, can be even more of a gamble then initial treat­ments. If a patient responds well to initial treat­ment and a trans­plant, is there a reason to con­tinue treat­ment to main­tain that progress? This can be a tricky question, especially for standard-risk patients who did well after initial treat­ment. In a nutshell, all treat­ments come with risks. To undergo main­te­nance ther­apy, a patient must decide that the chance of achieving extended pro­gres­sion-free and possibly over­all survival outweighs those risks.

There is data suggesting that main­te­nance ther­apy for “high-risk” patients like me can extend time without relapse, so fol­low­ing my trans­plant, my doctors rec­om­mended an aggressive main­te­nance ther­apy of a half-dose of the pre­vi­ous KPD treat­ment. This de­ci­sion was based on research out of Baylor University that sup­ported a triplet of medications for three years for high-risk patients.

During the first ten months after my trans­plant, my lab results showed a barely measurable amount of M-protein. After that, over two years now, there has been no measurable amount of cancer detected in my blood tests. By all standards, this is a great result and con­sis­tent with the best out­comes reported in the Baylor study. While there is no way to know if my current con­di­tion is because of the main­te­nance treat­ment, given all that has occurred in the last three years, I believe the de­ci­sion to proceed with the aggressive main­te­nance ther­apy was correct.

Now that I’m ap­proach­ing that three-year mark, I must decide what’s next. It’s easy to think that if the dis­ease is being kept at bay and I’m not suffering many side effects, I shouldn’t change any­thing. Though my current results are all we could have hoped for, as I under­stand the research, there is little in­for­ma­tion about what benefits, if any, I might achieve by continuing this treat­ment beyond three years. There is, how­ever, an ever-growing risk that the toxicity of the treat­ments will eventually be more than my body can handle, and that may open the door for more serious side effects or sec­ond­ary cancers.

Since there is a lack of clear data about the clin­i­cal benefits of continuing this aggressive course of main­te­nance, I will decide based primarily on how the treat­ments impact my quality of life.

I’m convinced that Kyprolis is a myeloma-killing champion for me. Other than my trans­plant, it also has had the most sig­nif­i­cant impact on my quality of life. Kyprolis is admin­istered by in­fusion. As an initial treat­ment, it required trips to the clinic on two consecutive days three weeks on, one week off. As main­te­nance treat­ment, the trips are cut to one day a week, but still three on, one off. For me, that means a two-hour roundtrip drive and any­where from two to five hours at the clinic. Since starting Kyprolis in Jan­u­ary­ 2016, that has been a lot of time on the road and in the clinic. Since my appoint­ments are generally Friday or Saturday, it also means I can’t plan to travel or par­tic­i­pate in an activity on many weekends because I have treat­ment.

My wife and I cope with this schedule because we under­stand it is nec­es­sary and because my getting better has be­come one of our jobs. We are used to the inconvenience in our schedules and our lives, but it would mean everything to retake this time from the dis­ease.

Time, I have discovered, is more precious to me than any­thing else. Time with my family. Time with my grand­chil­dren. Time to take pictures and enjoy the world I live in. Time to work on the projects that are priorities to me at work. Time is finite with our without myeloma, and making use of the time doing what I want to do, instead of sitting in traffic or in a clinic bed, is the ultimate im­prove­ment to my quality of life.

Based on the ever-increasing risk of toxicity, the lack of compelling evi­dence I would im­prove my chances of long-term survival, and the thought of even a short-term return to a more nor­mal life, I have decided to drop the Kyprolis from my on-going treat­ment plan. On my doctor’s advice, I will con­tinue the oral medications of Pomalyst and the dreaded dexa­meth­a­sone. We will closely monitor my health and meet regularly with my specialist, ready to change course at the first sign of a relapse.

When I was first diag­nosed, I looked at treat­ment as a way to avoid dying. On this anniversary, I celebrate the past success and look at main­te­nance ther­apy as a way to keep living my life.

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 Photo Credit: (c) 2019 Mark Pouley

I celebrated my anniversary this year, as in the past, vaca­tioning at our eastern Washington lake retreat. As always, it was splendid. When we’re at the lake, I spend early mornings on my boat looking for scenery and wild­life to photograph. This year a bald eagle let me get unusually close, and it stayed and posed for many great photos.

The Pendulum Throws

“Can’t know what’s high, ’til you been down so low. The future’s bright, lit up with nowhere to go. To and fro the pendulum throws.” So begins the Pearl Jam song Pendulum, and so goes life with multiple myeloma.

Can’t know what’s high, ’til you been down so low. 

The future’s bright, lit up with nowhere to go.

To and fro the pendulum throws.

We are here and then we go, my shadow left me long ago. 

Understand what we don’t know.

This might pass, this might last, this may grow. 

Easy come easy go, easy left me a long time ago.

– Pearl Jam “Pendulum”

Not only do I like this tune and highly rec­om­mend listening to it, but I also find the song’s content very appli­­cable to multiple myeloma.

The physical and emotional effects of multiple myeloma are not linear. There isn’t one starting point that directly moves to a finish point. Life with multiple myeloma is a pendulum, not an arrow. To and fro the pendulum throws.

With some diseases, a person feels sick, displays evident symp­toms, is treated, and recovers. For me, like many myeloma patients, I wasn’t sick, and I didn’t have any evident symp­toms of the disease. It was accidentally discovered, I was treated, which made me ill, and I im­proved. Even so, I never returned to my pre-diagnosis self. Others come to their diag­nosis very ill with many symp­toms, receive treat­ment, and im­prove.

Whatever our end state is fol­low­ing treat­ments, it isn’t static.

For most of us, myeloma will return, the pendulum throws, and we go through the back and forth of illness, treat­ment, and im­prove­ment. Sometimes multiple times. Even during times of remission, our health may move to and fro.

It can be discouraging to feel your health im­prove only to see it decline again. However, that is often the reality of living with this disease. It can be confusing and discouraging if you ex­pec­t a straight line be­tween diag­nosis, treat­ment, and re­cov­ery.

Emotionally, I was at my lowest the first few months after diag­nosis. The anxiety I felt was sometimes debilitating and often cut me off from the people and things I love the most. This extreme low, how­ever, taught me to appreciate and recog­nize the highs that followed.

Possibly my highest point in the last four years was our recent family trip to Disneyland. However, there have been many other high points since my diag­nosis that I appreciated more because of the low place I had come from. Can’t know what’s high, ‘til you’ve been down so low.

Within weeks of experiencing this joyful time, I had bouts of sadness and anxiety, mourning the possible loss of time with my grand­chil­dren, wife, and family. While I intellectually under­stand these feelings, and I’m fairly good at letting them pass, they emerge nonetheless, sometimes unexpectedly and deeply.

I’ve never returned to the lowest point I felt after diag­nosis, but I know it can hap­pen again with a relapse or future treat­ment failure. Certainly, I swing back to sadness and depression with some frequency, even as my physical health con­tinues to move in a pos­i­tive direction. The highs may not always be as good as before, and the lows are not as bad, but like a pendulum, to and fro, the feelings change.

After my diag­nosis, I recog­nized how low I had fallen, and I sought professional counseling. I have friends and family to turn to, but having someone to whom I can say any­thing was im­por­tant. I didn’t have to con­sider whether sharing my feelings would scare him, make him sad, or make him judge me. Those con­sid­er­a­tions are always present when I talk to friends and family. It helped immensely, and I use the lessons I learned to help me past moments of anxiety that visit me now and then.

My counselor retired in August 2018 and, because I was feeling well, I didn’t look for a new counselor to con­tinue my sessions. Since that time, how­ever, I’ve realized how much I appreciated talking to him, even when I was in good spirits, and how it kept me stable. I realize now the importance of those conversations, and I’ve found a new counselor to help me main­tain my bal­ance.

Living with multiple myeloma isn’t easy. Understanding myeloma can chal­lenge the experts; it’s even more mysterious to non-medically trained patients. The variety of treat­ments avail­able give us many options, but it also makes the de­ci­sions dif­fi­cult. Enduring the changes in our health and emotions is tiring. Easy left me a long time ago.

The one truth about multiple myeloma is that we don’t know exactly what our future holds. We have ideas, good and bad, but what do we know for sure?

My doctors can prepare me for what may hap­pen in the years ahead, but there is no certainty in any prediction. This might pass, this might last, this may grow.

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The haunting song “Pendulum” by Pearl Jam

 Photo Credit: (c) 2015 Mark Pouley

“The futures bright, lit up with no where to go.”

What’s Next?

“What are you going to do next?” It’s rare that a slogan printed on a hat makes me pause, but reading this quote in a gift shop at Disneyland made me think. Feeling so good today, I have to ask myself, What’s next?

“What are you going to do next?”

It’s rare that a slogan printed on a hat makes me pause, but reading this quote in a gift shop at Disneyland made me think.

My wife and I joined our oldest son and our three adorable grand­children for three days at the “happiest place on earth,” and it was amazing. Seeing this magical world again through the eyes of our grand­children was heart-warming beyond description. As a multiple myeloma patient four years past diag­nosis, the trip was even more special.

Feeling so happy, and healthy, it was appro­pri­ate to ask myself, “What are you going to do next?”

For the last few years, I’ve focused on treat­ments, side effects, and test results. Nearly all of my thoughts about the future involve calculations about life with myeloma, the odds of relapse, and what a relapse will look and feel like.

During this time, if I asked myself “What are you going to do next,” the answer was typically related to my next appoint­ment, my next lab test, my next medication, or what I’ll do when I relapse. In a very cynical way, my answer to the question often focused on what I’d do next trying not to die.

While I’ve never been able to forget about this disease, and I never will, I found joy and savored the time I spent with my family during those three glorious days in March. Most sig­nif­i­cantly, this hap­pened with­out me giving much thought to multiple myeloma, some­thing that has eluded me since my diag­nosis.

Instead of planning on what I intend to do next in my efforts to fight myeloma, my trip last month reminded me to put my energy into my plans for how I will con­tinue to live.

I owe Walt Disney a lot of credit for creating a place where this can happen, but I’d like to think our vaca­tion was just a reminder about the mindset I can employ in my continuing life as a cancer patient.

If my health remains unchanged, for at least the next seven months I will con­tinue on an aggressive treat­ment regi­men that in­cludes Kyprolis (car­filz­o­mib) infusions, along with a trip to the clinic, three times a month. I will remain fatigued, occasionally forgetful, and a not-so-delightful companion on dex days. After that, there’s a fair chance I’ll travel less often to the clinic and enjoy more freedom from treat­ments and side effects.

If my health changes, all bets are off, and I’ll start a new path to take control of the disease. This contingency is, how­ever, entirely speculative. There is no reason­able way to plan for it because I don’t know when it will happen or what form it will take. There is simply no way to guess what this will mean to my life and the plans I make going forward.

While it is im­por­tant to under­stand these contingencies and be ready to deal with them, I won’t let them dictate my answer to the question, “What are you going to do next?”

I just read April Nelson’s Beacon column for this month. As a 14-year survivor, April is, to use her words, an outlier. She has no good explanation for her longevity. Her conclusion is that this is just what myeloma looks like for her. I take her journey as a lesson that we don’t know what our future holds. We can only play the hand we are given.

The hand I cur­rently hold is a pretty good one. After my diag­nosis but before treat­ment, I was rel­a­tively healthy, with only minimal bone involvement as a result of the disease. Following my initial treat­ment, an au­tol­o­gous stem cell trans­plant, and aggressive main­te­nance ther­apy, the myeloma is cur­rently undetectable. The side effects from all the treat­ments have been rel­a­tively mild, and I am generally able to live the same life I did before diag­nosis.

So, what am I going to do next?

I have tickets for three concerts this year (in June, July, and September). The artists and venues are varied, but each is someone I’ve seen before and that I eagerly want to ex­peri­ence again.

“Moulin Rouge” is one of my daughter’s and my favorite movies, and it is opening as a live musical on Broadway in June. We are planning a trip to New York City this fall to take in the show and soak up the city.

My brother has a vaca­tion home in New Orleans, and though I’ve always wanted to visit The Big Easy, it has never happened. Seeing a new oppor­tu­ni­ty, we are hoping to join my brother and sister-in-law there sometime this year.

We have other places we would like to visit, but they may require passports, planning, and savings. While myeloma could change our ultimate actions, it will not alter our goals.

My wife and I have meaningful and specific conversations about poten­tial retirement. While we don’t ignore the natural “what-ifs” generated by myeloma, they do not drive the conversation. Like so many other people our age, we are looking at our finances and goals, and we’re making plans to be with each other and enjoy the time when we leave our full-time jobs.

Finally, I again con­sider my family. Whatever I “do next,” it will in­clude my grand­children, my children (who all are now adults), my wife, and my other family as often as possible. Last month’s trip to southern California reminded me how happy I can be just being with these wonderful people when we set aside our cares for a time and let ourselves be happy.

More of that; that is what I am going to do next.