Pat’s Place: Decisions, Decisions …
I understand that it’s not unusual for any family that is touched by cancer to face a number of difficult decisions. But from my work with other types of cancer, and my experience acting as my wife Pattie’s caregiver when she had cancer, I have learned that those of us battling multiple myeloma are forced to make a lot more decisions than most.
Sure, second opinions are common after any cancer diagnosis. But many other cancers can either be cured or forced into long-term remission.
Multiple myeloma is different, though. Myeloma relapses faster than most cancers. So, myeloma patients, caregivers, and their families are forced to make bunches of difficult decisions, interspersed with relatively short and anxious waiting periods.
The responsibility and gravity of these decisions can be staggering.
Some of you may be “lucky” enough to be diagnosed with monoclonal gammopathy of undetermined significance (MGUS) or smoldering myeloma before any treatment is necessary, or you may be enjoying time off during a complete response or otherwise stable disease.
Most long-lived survivors treasure this quiet downtime. I like to call it the “calm before the storm.” Even though you aren't currently undergoing treatment and may have periods in which you can almost forget about myeloma, there is always the nagging wonder about when you will progress or relapse and need to make all of the dreaded treatment-related decisions.
But what about everyone else?
Do you remember how stressful it was back when you or your loved one was newly diagnosed? When you barely knew how to say or spell “myeloma,” yet needed to decide where to go for treatment? Or when you had to decide whether to transplant or not, and whether to use maintenance or wait? And of course, there’s always the question of how am I going to pay for all of this?
Over the last 12 months, I learned that my autologous stem cell transplant hadn’t worked and I would need intense consolidation therapy to help get my myeloma back under control.
What should the therapy be? Should I transplant again? If not, how often would I need chemo, and what would the doses be? Would it work? If it works, what then? When should I start a maintenance therapy regimen, and what would that be?
I started thinking about all of these decisions myeloma patients need to make – and how difficult and unfair it is – while I was part of a discussion last week that involved a number of patients and two myeloma specialists.
One patient asked how her father should be treated now that his transplant from nine months ago wasn’t working anymore.
She briefly described the therapy her father had been on before and after the transplant. The two physicians each made a thoughtful suggestion. They were completely different, of course. But what struck me is what the second physician said as he rattled off three or four different suggestions. “It’s up to the patient to decide which therapy to choose,” he said.
Really? Up to the patient? I thought it was the doctor’s job to decide which treatment is best for the patient!
I can’t think of another type of cancer where so many decisions need to be made so often, many of them by the patient and family, not the physician.
To be fair, this isn’t the myeloma specialist's fault. Experts are still a decade or more away from being able to look at a patient’s genetic profile and know up front which therapy or therapies should work best. So without reassuring data to help point your doctor in the right direction, many of these decisions fall back on the patient and their family.
How old is the patient? Do they have other diseases or complications that exclude one type of therapy or make another potentially too hard on the patient. These are questions a doctor can deal with. But what about quality of life issues? And can they afford it? How far away from the clinic does the patient live? Is he or she able to stop in for regular treatment?
Even though physicians don't know answers to all of the questions yet, the ultimate question and decision a myeloma patient and caregiver need to make is still: Is your current hematologist/oncologist qualified to help you make these decisions? Does your doctor understand the ways existing drugs can be used in combination?
Kyprolis (carfilzomib) was just approved by the U.S. Food and Drug Administration six months ago. Pomalyst (pomalidomide) should be approved any day now. Does your doctor understand how and when these new drugs should be used?
Whew! I’m exhausted – and this exercise isn’t even real! But the hard part is that this is real for most of us.
Needing to make so many difficult decisions, so often, means putting together a competent and well-informed heath care team is vital. We all need all the help we can get as we face decision after decision after decision …
Feel good and keep smiling!
Pat Killingsworth is a multiple myeloma patient and columnist at The Myeloma Beacon. You can view a list of his columns here.
If you are interested in writing a regular column to be published at The Myeloma Beacon, please contact the Beacon team at .
Thanks for this post, Pat. I am in that hiatus place you talked about above, and am very grateful for it. It's been about 18 months since my ASCT, which achieved and is apparently holding onto a very good partial response... so it really is just a matter of time for me and I will be back on the wild ride again.
Your post was timely because I am feeling a bit lost these days: I feel really quite well, and am getting stronger every day, it seems... yet, in the back of my mind I cannot shake the sense of "impending." I just cannot let it go, even though at the moment I really should be able to, and it would probably be good for me to do so. I AM very glad that my Beloved is able to, and I don't say much of anything about what I am thinking so that she can maintain that space... but a lot of days it gets pretty difficult (and yes, today is definitely one of them.)
I wish you, and all of us going through this, the ability to be as strong as we can, both for ourselves and those we love. And I wish us all the patience to do the work of understanding what our options are... especially those of us who have to make those choices ourselves.
And again, thanks for being so open and transparent about what you are going through. You put into words on the page a lot of stuff many of us sense but don't fully articulate... and that makes you pretty important to us.
Excellent thoughts, Pat.
I have known of many people who have lived ultra complicated business and/or personal lives end up wringing their hands in frustration and fear at not being able to make a slam-dunk decision about their MM treatment because there are so few 'black and white' obvious avenues to take.
It's tough on the patient population when the big-dog MM specialists don't agree on treatment protocols.
Having achieved a complete response with four years of rigorous treatment behind me, I'm in that 'honeymoon' period where I have not experienced a relapse. In a charmed life, it would stay that way forever. Instead, thoughts of 'what if this happens' and subsequent decision trees occupy some of my time.
You're a coach, Pat. You understand that the very last thing I want to do is to be caught flat footed. But, man, I sure wouldn't mind sitting on the MM bench for a bunch more years.
Thanks for your steadfast commitment to the MM community.
That is a great summary of how it is nowadays for patients trying to decide on a course of action. The myeloma specialists will of course guide us through any treatments, but there are such totally differing types of treatments that I suppose one can always be 'second guessing' about them. I would like to think that there are several different ways of reaching the elusive goal of health! Not all patients have access to all possible drugs, transplant types etc., so we just have to hope that there is more than one way to achieve success in this. Thanks Pat for all the work you do on behalf of patients and caregivers!
Pat,
Great article. I am one of the "lucky" few who are currently in remission. But even remission is not without its decisions. Do I want to deal with the nerve damage. Numb hands, fingers, and mind? The restless leg syndrome which drives you crazy because you can't stop the motion. All are side effects of the maintenance with Revlimid. And yes, the continuous blood work and bone treatments to strengthen the weakened vertebrae that MM destroyed.
But as you stated, the unknown, when will I relapse, what do I do next, will I be able to work, how is the new chemo given? This cancer is not like any other, and thank goodness there is so much new research into new combination and treatment options. I read the Beacon every week, and am part of several studies in the hopes that it will help the next MM patient. Although I hope there will be a day when there will not be a next patient. But all of you keep those of us who are in remission informed of the treatments and side effects that can and do assault us and this makes us wiser in our decisions that we will have to eventually have to make in our care one day soon.
So, keep up the good work, keep the faith and know that many of us believe in and practice prayer for you.
Mary
Pat,
Just wanted to say great article. I'm still relatively early in this process (not quite two years since diagnosis), but even these early decisions weigh on me at times. I can only imagine how much harder they become further down the road. That's one of the reasons why I've educated myself as much as I can in regards to this disease and it's treatment. I decided early on that regardless of how this ended, I wanted to have no regrets - My decisions would be based on the best info and guidance I have at the time, and I would do what I felt was right. (Especially since there is such a wide range of expert protocols out there.)
Snip,
Hang tough, my friend. I am in a similar place, and there's not a day goes by where I don't think about what might be coming. Not that I dwell on it (most times), but it's there. And like you, it's not something I want to intrude in my wife's space. That being said, it always helps to have someone to lean on, even if just to vent, and even if it's in an online forum like this.
Be well, folks. And I hope we have many years ahead of us to continue to make decisions. (Although I'd be quite happy if the most impactful were simply where to go for dinner tonight...)
I understand, Snip! I feel a that way a bit, but my dilemma is the difficulty planning. One really might "play" more. Most would say if they were only going to live for a short year or two. But I'm the opposite. If I only have, say a year, I would make sure I finished my next book, did even more outreach and even set-up a foundation using some life insurance--that sort of thing. But if I have longer I might take my foot off the accelerator some. Mmmm. A good topic for next months column?
Great hearing from you, Sean! According to the great Dr. "B," you are cured so no worries, right? I say that only a little tongue and cheek. I would be so encouraged to be in such a deep, long term remission. Enjoy it! You earned it! Total Therapy is no fun, right?
Thanks Russ and Nancy! And Mary, great point about the PN--an example of those "little decisions" we are forced to make all of the time! Except they aren't so little, are they? Decisions that seem small today can have a real impact on our quality of life down the line. Man, I need a vacation!
Pat , Great article. I agree, one of the most difficult things about multiple myeloma is the seemingly never ending string of decisions which have to be make, based on information which is often incomplete or conflicting. Sometimes based on flawed human judgement. Experts are often in disagreement. As a patient this is incredibly frustrating. It drives my wife crazy. As a physician I am accustomed to the inherent uncertainties in the medical field and I think to some extent it has helped me deal with some of these issues and I think is also helpful when talking to my myeloma docs.. I think that you have to approach it accepting that there are often no definite answers. I am a believer in getting 2nd and even 3rd opinions from experts in the field and getting as much information as possible and being a big part of the decision making process
Great point, Arnie! Most of us expect and feel that medical "experts" will be able to give us direction and help make our lives easier instead of often adding to the uncertainty. And it's incredibly frustrating when support staff, like techs, check-in staff and even nurses at our clinics and hospitals don't seem to be able to do their jobs well! Of course, we are there so much we see the bad and the good, right? They are all only people, too, having good days and not-so-good days. Doesn't always make it easier - especially when we aren't feeling good or are fed-up with spending much of each waking day waiting or having a blood draw re-done...
Hey Pat, as always a great article. You keep people thinking which is very important. I am awaiting the day I become Relapse/Refactory and I have read all I can on the subject and there are so many options it is mind boggling. So, you are correct, we just have to make sure we have the best Care Team we can find and hope they can give us the best outcome.
Hope you are doing well, God Bless
Options are good! But it would help all of our pieces of mind if we didn't feel like everyone was guessing about which way to go and what to try first. This decision thing should probably be considered part significant part of living with the cancer and addressed directly, instead of by drips-and-drabs from info we get in small pieces. It might help if our docs treated the whole patient. They have been talking about that for years, haven't they?
Hooray, Pat! Pomalidomide is approved today. That gives us all more options. I agree with you; physicians and patients who take a truly holistic approach do better and enjoy life much more. Keep on insoiring us with your insightful blogs! Best wishes, Jan
What a great article. We are in that dilemma right now. January, 2013 my husband was celebrating six years of a complete remission. However, after his follow up testing this month, we were told he is slowly coming out of remission and will need chemo in six months. We always knew this would happen. We never really relaxed but enjoyed many family moments.... every year of complete remission was hopeful. But now the research begins....what should my husband do....another transplant, chemo etc. What decision should we make? Thank God we do have options and we have been reading everything we can get our hands on. I thank the Beacon for so much info. We that walk with Myeloma in our family walk a tough walk.
How wonderful to be able to share six years in remission! Which makes it all the more difficult to cross-over to the "dark side" of watching and waiting and trying to decide which therapy combination might work best. I'm not a physician, but if it were me I would do exactly what I did to get those six years. Even if rule of thumb holds--that second remission averages one half the time of the first--your husband could/should be good for several years. At the rate new myeloma therapies are being developed, there could be a half dozen new ones to help confuse you when its time to make decisions again. Good luck!
I was comforted to see your story- that SCR did not put you in remission and yet you found remission after 9 months of more chemo. I had SCR in Nov 2012. It went OK except I had host v graft disease (even though it was my own cells!) and was in ICU for a while. I had an appointment 6 days ago, approximately day 100, and I am not in remission- which is incredibly disappointing. I feel good, some neuropathy, but my strength is coming back and I hate the idea of going back on all the chemo and feeling as crumby as I did last summer and fall. I started back on Revlimid last week, but you definitely put your finger on the hardest part for me - decisions. If the doctors could say, "you have 30% chance of living one more year is you take _________" then I could evaluate that and decide if one more year would be worth it. But, I suppose the doctors do not really know how we respond until they try things.
Exactly! They can't really say that. Everyone's guessing, making decisions even tougher. Which brings it all back to quality of life. Live best we can as long as we can, right?
It is very helpful and supportive to see this aspect of living with myeloma articulated. My husband had an SCT in Nov 11 and is now experiencing a rapid relapse - not much punch for the SCT buck.
We are facing major decisions such as the need to move away from our current expensive area if my husband is no longer able to work half the year. I am also toying with the idea of relocating near a major myeloma center where more clinical trials are performed. Everything is completely up in the air.
I am looking forward to the day when myeloma treatment will be less reliant on a trial and error crap shoot approach and more reliant on solid, fine-tuned, sophisticated science.
Thanks for the articles. Much appreciated.
We almost moved to Rochester, Minnesota where Mayo Clinic is located, Nancy. One reason we relocated where we are in Florida is it isn't far from Moffitt Cancer Center, which came highly recommended by a well known Mayo Clinic doc from Scottsdale, Arizona, Dr. Kieth Stewart. If we ever move again, I have two requirements: live within one hour of a major myeloma treatment center and good airport. Oh, and in a warm place, too. Cold really hurts my "holy" bones!
Pat and others,
Boy, do you capture the vagaries of multiple myeloma mayhem ! I wish I could send your pieces to all my friends and family who feel I've conquered cancer because I've defied a few odds and cancelled a predicted funeral. The waiting, the looking over our shoulders, the &$@#% albatross around our necks- those outside of MM simply don't get it sometimes.
I've contacted the Beacon about starting a post and join you in the sharing-reaching out game. My worry is that my writing style borders on the good (and not so "good") Dr. Hunter Thompson gonzo persona. The disgusted, crazed, angry cynicism looking for some lost purity and innocence helps me vent and also laugh about Planet Cancer.
I think it would wonderful to hear a "wild and crazy perspective." Why not laugh? I could use more of that.
Well said! Sometimes I feel like I (like any of us with myeloma) stand there with the choices, options, treatments, and recommendations whirl around me. (And to Van Townsend, whose comment is two above this one, come on in, the water is fine!)