Myeloma, Party Of Two: As Slow As You Can
We live in a world today where everything is “on-demand.” We have television apps that show movies anytime we want to see them. We carry hand-held computers that can answer our every query while making an overseas call. Services exist to deliver anything we want at any hour, and we can even pay our bills while in the comfort of our living rooms.
Amidst all this “on-demand” life, it’s difficult for people to understand why they can’t do more for my husband Daniel’s smoldering myeloma. Well-meaning people look at me quizzically as they ask about his condition. I can see the doubts in their eyes, and the questions that follow – voiced and unvoiced - asking things like, “So, you mean they haven’t started treatment yet? It’s been several years, right? And it’s still growing in him? Can’t they just give him chemo or something? You know, my aunt / parent / coworker / sibling / friend had cancer and they gave him / her chemo.” I try to explain, but it’s difficult to understand – heck, I’m not even sure that I do, so I get why they’re skeptical.
We may live in an on-demand world, but multiple myeloma is not an on-demand kind of disease. The most sophisticated blood tests can’t predict everything we need to know about how to best treat this individualized disease filled with outliers and exceptions to the rule. There is no crystal ball that will give us time-to-progression statistics or overall survival data for each specific person’s case, nor do we know what drugs will best work right out of the gate for every type of multiple myeloma. In an on-demand world, we are doing the best we can with a developing knowledge base of myeloma. And because we’re still growing, we haven’t gotten it all figured out yet ... and that’s hard to accept in today’s Google-ready world of instant gratification and technological certainty.
It’s tempting to rush into action. At least then we’d be doing something, people tell me. But the more I see our good friend dealing with her lymphoma with increasingly fewer treatment options, I believe that we’re doing the right thing. She was very sick at the time of her diagnosis, and treatment was not only her only option, but it wasn’t a guarantee at all with her high-risk lymphoma. We were all encouraged by her immediate response after that first trial drug, and we were hopeful that it would keep her in remission for a very long time.
Sadly, it lasted just short of three years before she relapsed. It’s been about a year since then, and she has already gone through two more different treatments, neither of which were as effective as that first drug right out of the gate. With each new drug they are finding a shorter period of response before the next relapse, and they are running out of options for her. I read about multiple myeloma patients with similar stories as well.
Now, before the hate mail begins, I should say that I know that a short-term remission is better than no remission at all. I stand with our friend’s family in saying that we are very thankful to the treatments she’s had, because without them, she wouldn’t still be here. She was that sick at the time of her diagnosis.
But is anyone content with a “few years?” Especially when that someone is a young person, not even in his middle forties? I’m not content for that for Daniel. I’m not looking for the three- or the five-year remission. In fact, I’m not even looking for the ten-year return. I need so much more. We have so much more life to live together.
In my heart, I must believe that we are on the right path. I trust his myeloma specialist at MD Anderson, who tells us that the longer Daniel can hold out before treatment, the better. We’ll have better classes of drugs, and better information about which drugs work best when, when it comes time to start treatment. Every day I pray that the right myeloma drug for him will come along in time, that he will continue to “smolder” until a cure can be found.
Recently I heard a story about the famous race car driver Richard Petty. As he was preparing for his first major race, his father told him, “Win the race as slow as you can.”
That statement really resonated with me for where we are at this stage of Daniel’s smoldering myeloma.
How appropriate, I thought. Just as drivers heed the caution flag amidst the ferocity of the race, we warily approach the treatment room in the fight for survival, praying that when Daniel does enter treatment, it will be with the right drugs at the right time, and that they will grant more than just a few laps around the track.
Life may be moving at an on-demand pace, but we are focused on the only thing that matters - racing against myeloma as slowly as we can in hopes of the ultimate win.
Tabitha Tow Burns writes a monthly column for The Myeloma Beacon. Her husband Daniel was diagnosed with smoldering myeloma in 2012 after initially being told he had MGUS. You can view a list of her previously published columns here.
If you are interested in writing a regular column for The Myeloma Beacon, please contact the Beacon team at .
Thank you, Tabitha, for writing this column. It deals with an extremely important topic, and you provide such a valuable perspective.
What's confusing for many people is that multiple myeloma is different from solid tumor cancers like breast cancer and stomach cancer. Many solid tumor cancers are curable. This means that the earlier you catch and treat the cancer, the more likely you are to cure it. It also means that, within reason, the more aggressively you treat such cancers, the more likely you are to cure them.
Unfortunately, multiple myeloma is not yet curable except in the limited number of cases where an allogeneic (donor) stem cell transplant is an option. So the way people think about treatment for many solid tumors does not apply. Treating early and/or treating aggressively will not cure a myeloma patient, at least not with current treatment options. The disease still relapses.
This is backed up by literally decades of clinical trials, where the majority of studies have found little difference in overall survival between early and delayed treatment of smoldering myeloma, and little difference in overall survival between more aggressive versus less aggressive treatment of symptomatic disease.
Keep in mind, as well, that myeloma patients these days are living longer and longer due to the greater number of treatment options they have. So it is becoming more and more important to ensure that patients are not subjected early to intensive and prolonged treatments that can reduce their quality of life, cause new health problems, and limit future treatment options.
Of course, there are institutions that would benefit to the tune of billions of dollars each year from earlier treatment of smoldering multiple myeloma, and from more aggressive and more prolonged treatment of symptomatic multiple myeloma.
Imagine the financial implications if more smoldering multiple myeloma patients around the world were actively and continuously treated for their disease starting at the time of their diagnosis.
Likewise, imagine the dollars and cents ramifications if treatment of symptomatic multiple myeloma were to routinely involve 4- or 5-drug regimens, given continuously until progression, instead of 2- or 3-drug regimens given for just 6 months.
It's best to keep those financial forces in mind when you read about studies "demonstrating" that early treatment of smoldering myeloma is a good thing, or that more intensive treatment of symptomatic disease is a good thing. So many times, such studies do not have a control arm, or they've been designed in a way that the different groups of patients in the study are not strictly comparable.
I'm glad that Daniel is under the care of a specialist who has the experience and expertise to be able to advise both of you so wisely.
Tabitha - this is an excellent article and a very important topic - probably the most important. My mum had MGUS for 5 years. When it progressed to symptomatic myeloma, she waited 3 further years before starting any chemotherapy. It is now 10 years since her diagnosis of MGUS, and she is onto her third line of treatment now - still no stem cell transplant. Mum and I have often discussed the road she chose and the decisions she made along the way and are almost certain she wouldn't be here now if she'd started on chemotherapy when she was diagnosed with MGUS 10 years ago. We definitely think it is all about winning the race slowly. Best of luck to you and Daniel.
Thank you, Jim and Lex, for your comments. I really appreciate your insights!
Jim, you have brought up some good points that resonate with many people who are identifying the right time to treat their multiple myeloma. Ultimately, we all rely on the counsel of our specialists, but it is a very difficult decision to make, especially given what you have pointed out that "treating early and/or treating aggressively will not cure a myeloma patient, at least not with current treatment options. The disease still relapses."
Of course, there are two sides to every argument, and most of the argument to treat early (as I understand it) centers around trying to prevent end organ damage from occurring during the "watchful waiting" period of a patient that will likely progress to symptomatic myeloma. If a patient is likely to progress, one could argue, then why not treat early and try to prevent the damage that occurs once CRAB symptoms appear?
It's a tough decision to make, and if it weren't for Dan's specialist having almost 5 years of data points on Dan as a patient, we might not have the luxury of waiting right now. Many smoldering patients present with "early treatable range" numbers like Dan, and the prudent thing might be to begin treatment, because the specialist doesn't know how quickly their disease may grow. We feel very fortunate to have a physician that knows Dan's case history. Obviously, Dan is watched very carefully, and if his numbers reach a point where they behave in a certain way or if he demonstrates any traditional CRAB symptoms, it will be "go" time. Every case is different, and every person should weigh their options very carefully with their specialist. It's not an easy decision, and it could have very significant repercussions either way.
Lex, I am so glad that your mum is winning the race slowly! It sounds like the pace of her disease progression was slow enough to give you some desperately needed time for better drugs to come along. When I think about the difference in the treatment landscape for myeloma over the last decade, it truly boggles the mind. I used to know the treatment options like the back of my hand, and I can scarcely keep up with them now. Surely this bodes well for the future - I hope!
Thank you both again for your thoughtful comments! Wishing you well!
Tabitha
Dear Tabitha,
Thank you for your thoughts on this subject. I shed a tear when I read your words about not being satisfied with a 'few years' or even the ten year return. Just like you, we feel we feel we have so much life to live together. I hope things go as slowly as possible for you and Daniel.
Dear Tabitha,
A provocative column written with beautiful metaphors. I did not have the same choices since I began with symptoms and a high-risk genetic profile. It seems as if you and your husband have to struggle with less clear options. I am glad you have a myeloma specialist you trust.
Maureen
The waiting game so familiar! So many days over the last three years I've thought "another day, another week, another month, another year" with the prayer that further advances and new therapies will come along. In many ways my prayers have been answered, as I'm sure you are aware, so many new promising drugs have come down the pipeline! Science has provided us with many new insights from genetics. The terrible word cancer has haunted us humans for all of our history and so many millions have paid the price. Over the last 50 years so many wars on cancer have been fought, with promising developments in the past that only turned into false leads. But I would say to you "take heart" because of the pace of new discoveries it really feels to me that each day progress is being made. May the day we hear the word "cure" come quickly and in our days!
Great column, Tabitha
Tabitha, I can see your point on waiting for treatment. I am 66 now and was diagnosed with myeloma 2 years ago. I get blood work every 2 months and dread going in for the results. So far my numbers have been good but it is a waiting game. I'm the type that wants to do something now instead of waiting but with the myeloma I have been waiting. There are so many new drugs that are coming out every year that I just feel like it needs to be treated by using the body's immune system. But I still wait. My doctor tells me that I will probably need a stem cell transplant sooner or later and the decision is when do I do it. As you have stated, it is different for each individual. Good Luck and will keep your husband in our prayers.
Dear Tabitha, I think you are very wise to wait until you really need to have treatments. In our situation you are well monitored and hopefully that would indicate that you would start treatments before an adverse event occurred. I am sure that you would know the signs and symptoms of that too. Good luck to you and Daniel, and I hope that this interim period is for a long time!
Wow! Thank you all for your comments!
Marjorie, with your kind and thoughtful words, you seem to have zeroed in on the real crux of it all for me, and for all of us, I imagine. I hope things go slowly for you and yours too.
Maureen, thank you for sharing. I am glad that we have a myeloma specialist that we can trust, as well, for as I'm sure you know, it can make a big difference. I've been following your journey as well, and I hope that you are doing well. The hopeful words that Daryl has shared seem very fitting for you too!
Daryl, I agree, there are so many new drugs in the pipeline! Your beautifully written comment is written on my heart for us all: "May the day we hear the word 'cure' come quickly and in our days!" Thank you.
Gary, I sure can identify with your thoughts on waiting! It's no Bueno, for sure. Hopefully, you can wait awhile longer before you endure the rigors of a stem cell transplant. Best of luck to you, and thank you for your prayers! I'll keep you in my prayers as well.
Nancy, you are always so sweet to send us well wishes. I almost feel like I know you personally after these last few years reading your columns and reading your comments on mine. I hope that you're still singing in choir and enjoying these brightening days of spring. Most of all, I hope that you are responding to all the treatments that have rocked your world lately. Best wishes!
Thank you for all these informative insights for this newly diagnosed smoldering multiple myeloma patient. I'm still trying to grasp the meaning of it all, and you are all helping my wife and I to keep it all in perspective. For action people, it is hard to embrace the "win the race slowly" concept. Look forward for all your input in the future.
Nice column, and beautiful metaphor Tabitha. I am certainly with you on this. Another thing is to not let multiple myeloma dictate your life, and try to enjoy every day that you are treatment free and symptoms free, and try not to think of it between the checkups. Easier said then done, as it is always in the back of you mind. Best of luck!
I really appreciated this column because it was so on point. It truly resonated with me being that I too am smoldering (and not in a hot, cool and sexy way). Thank you so much, and I will always remember to win this race as slow as I can.
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