Mohr’s Myeloma Musings: Quality Of Life Or Longevity?
Perhaps the biggest question someone who has been diagnosed with multiple myeloma faces is: Quality of life, or longevity?
As I reflect back on the three years since my diagnosis, I realize this question has factored into almost every decision I have made in dealing with the disease.
When my doctor recommended the “watch and wait” approach shortly after my diagnosis, the quality of life factor outweighed any benefits that might have been obtained by starting induction therapy in the early stages of the disease, even though my myeloma numbers justified treatment.
When the myeloma numbers reached a level that couldn’t be ignored, the decision to begin induction therapy was not a difficult one to make. However, after going through seven cycles of Revlimid (lenalidomide) / dexamethasone (Decadron) and the related side effects, I am thankful my doctor delayed that experience for me by 16 months with a “watch and wait” approach.
The decision to have an autologous stem cell transplant, followed by maintenance therapy, is one that creates lively discussion for those with pro- and anti-transplant opinions, as demonstrated by the columns, comments, and forum postings here at The Beacon. Some may argue that the verdict is still out on the long-term benefit of that procedure. However, for me, four check-ups since the transplant showing no evidence of the disease in my blood would suggest otherwise.
I had pretty much resolved the question of quality of life versus longevity for myself and have been at peace with the course I have plotted.
However, the question returned two weeks ago when we buried my mom. She died suddenly, though not unexpectedly. Cancer that originally was located in just her cheek had spread in a matter of weeks to both of her lungs, her liver, and her spine. After viewing her last scans, her doctor gave her weeks to a few months to live. Fortunately, she suffered little, due to the fact that she issued a ‘do not resuscitate’ order after nearly dying six weeks ago.
I was not close to my mom. Growing up in a missionary family in the late 1960s and early 1970s in Papua New Guinea demanded that I attended boarding school in Australia from 8th through 12th grade. We did grow closer over the last six months since she was diagnosed with cancer. Sadly, the thing that brought us closer was what eventually ended her life and in all likelihood will end mine – a rare cancer.
We spent a good deal of quality time together after she was diagnosed with cancer, discussing her options. Our discussions focused on questions familiar to multiple myeloma patients. Should she pursue a treatment regimen with all of the associated quality of life issues, with the possibility of prolonging life? Or should she forego treatment for as long as possible, avoiding the serious side effects of treatment, but running the risk of a shorter lifespan?
As I sat at her funeral getting ready to make my remarks, the thoughts that had been with me all week long still lingered: Did my mom make the right decision, based on my advice, to forego treatment? And after discussing the details of my mom’s last moments with my sister, what does death by multiple myeloma look like?
I have peace of mind that my mom made the right decision at age 83 to forego treatment. The simple logistics of traveling for treatment would have been physically draining in itself, let alone dealing with the side effects.
Most importantly, she was at peace with the decision. Her strong religious faith led her to believe that she would be healed without treatment. And while that did not happen, that faith led her to look forward with enthusiasm to our plans for her of going into an assisted living facility. She saw this as her next mission field.
I have often wondered if the survivor instinct takes over when the disease gets to the point where the odds of successful treatment are diminished to little more than hope. I can only hope that, when I reach a similar situation in my life – which the odds indicate will probably happen – I will be as courageous and optimistic as my mom was in dealing with that tough choice between quality of life or longevity.
Despite living with an incurable disease and the data indicating that I have but five to six year to live, I have never given much thought to death.
But, as I indicated earlier, as I sat at my mom’s funeral awaiting my turn to speak, for the first time since being diagnosed with this disease, I wondered what death by multiple myeloma would be like. Infections (with pneumonia being the most common), kidney failure, and blood clots in the lungs are the most common causes of death associated with multiple myeloma.
I continually kept wondering: How would multiple myeloma end my life?
I know these were morbid, even self-centered thoughts on my part, but they are a part of the experience of living with an incurable disease.
Fortunately, those thoughts have not lingered. Multiple myeloma is a “time robber” in so many ways. Allowing it to rob me of those emotions and thoughts normally associated with the loss of a loved one demonstrates that. I refuse to allow it to happen again.
Have you ever had such thoughts, and how did you deal with them?
Steve Mohr is a multiple myeloma patient and columnist here at The Myeloma Beacon. His column is published once a month. You can view a list of his columns here.
If you are interested in writing a regular column for The Myeloma Beacon, please contact the Beacon team at .
Steve,
I just want to tell you as I researched multiple myeloma, one of my best friends was just diagnosed, I came across the name Steve Mohr associated with this disease and I had no idea it would be someone I used to know. I have read all your columns and they have given me a better perspective in our discussions. So I just wanted to say thank you for this insight, but also I sincerely wish you all the best in your journey dealing with multiple myeloma. Sorry to hear about your mother, my mother passed suddenly last July. All the best!
Lori-thank you for your kind words and I am glad that you and your friend have benefitted in some way from my columns. The world certainly is getting smaller through technology. I have been amazed at how many people I have become re-acquainted with via writing for The Beacon.
I was diagnosed at age 55, purely by accident. I discovered a slight swelling just under my right clavicle area. It didn't hurt; it just felt "weird". About a month later, I noticed it hadn't gone away and had become painful. I made an appointment with my primary care doctor, then on to a specialist a month later. It was then discovered I had MM. A very short 2 weeks from diagnosis, a significant soft tumor in my sacrum had begun eroding the bone. I underwent radiation and RVD treatment immediately. There was no weighing of pros and cons of treatment. The tumor had to be dealt with, unfortunately I suffered a pathological stress fracture across my sacrum in the process. I was unable to stand or sit for months, it was like a nightmare I never woke up from.
From there, my time frame gets a little fuzzy. At one point I was placed on the ventilator due to the protein collecting in my lungs. They called my then husband and told him I may not make it through the nite. I'm a fighter and it was not without complications. My tongue had been hyper-extended during the process. When I came out of sedation, I thought I'd had a stroke. That took a long time before I could chew or talk normally. Finally, I got strong enough for surgery to repair the damage from the erosion. That was another nightmare. I wanted to live and didn't care if I ever walked again.
It was a grueling recovery process. After I recovered from the surgery, I underwent my autologous SCT. I participated in a 3-year clinical trial and was on Revlimid daily with Zometa infusion monthly. The time frame for all this happened from March to October 2011. I had been hospitalized weeks at a time. Fast forward to 2015, minus a husband of 16 years who couldn't deal with my cancer any longer. I'm going on 4 years now, passing this or that milestone. When I was diagnosed, I had declined so quickly that I never had time to carefully weigh my options. I chose outright survival. It had nothing to do with quantity or quality because the bottom line was that the majority of my decisions for my care were being dictated by the disease itself.
I am in remission on life maintenance with Revlimid. I walk unassisted and I enjoy my life. I'm good with that.
Steve,
My mother died of Parkinson's Disease when she was 84. It took 17 years, and the last 10 were not pleasant for her or her family as she wasted away. She had visions day and night (mostly unpleasant) and could see other people and things in the room when we were alone and was not rational. Probably the cruelist part is that the disease can leave the mind for an hour or so and she knew how bad she was. I always said I wanted to go with cancer with all my faculties, if I was taken before extreme old age.
This conditioned my thinking.
So even though I have myeloma, I still think we sufferers are fortunate that:
These things we should do early in the journey. None of this could have been done if you were to die in a car accident.
I am a year ahead of you on the journey and, although I know the averages, I am working on 10 more years, which helps me not bother too much about the possible limitations. (4 more and I beat one of the damaged life pension annuities I have and am in serious profit!)
I don't worry now about the final approach of death. It is likely to be short and, with modern medicines, relatively pain free.
We are not likely to be faced with the type of choice your mother had, and you certainly correctly advised her. If you have made your peace with the world, I doubt that you will be troubled when the time comes.
Live life with gusto and compassion for others, that your column has always shown.
Best Wishes
Ray
Dear Steve
I not only lost both very aged parents this year within days of each other, but also a sibling very suddenly and unexpectedly a few months later.
When I was diagnosed with MM I did not think I would outlive them as I had advanced stage and contracted pneumonia as a result of the initial 3 drug chemotherapy regime.
I had significant pre-existing issues impacting on MM outcomes. I was so tired and debilitated, although remaining independent in hospital, that I did not care whether I lived or died. I knew from the doctors there was a chance of not surviving. Any new drug regime will put me at risk and stem cell transplant was felt by the specialists to be too risky for me.
None of my loved ones who died had quality of life at the end and having spent my daily life with them know that I would have difficulty with being in their situation. Much depends on how much care support from others remains, because battling alone is not much fun.
I have been called inspirational and stoiccal by health staff because I have tackled things to remain 'moving forward in the right direction'. Now I find I am grieving in delayed fashion for those I lost Ilived my life with, not for my loss of life expectancy.
Joni - You certainly are a fighter and what you have gone through makes my challenges with multiple myeloma seem trivial. Your story is one all with multiple myeloma should read to gain inspiration. Thanks for sharing!
Ray - The points you make are very good ones and I particularly like the point of healing relationships, which I have not seen shared here before.
Edna - I am sorry for your losses, which would test the fabric of anyone. Thanks for sharing your story. I pray that you find the strength to continue moving forward and giving that stoical outlook that others admire and are inspired by.
Steve
What I tried to convey is I have seen that long life without quality, (defined by each of us according to our unique lives), may not always be desirable.
I had to discuss 'DNR' with my mother because of pressure by the health system messing her up. In the end the medical staff made a decision which I found difficult but could not change. I watched my mother die slowly. I prefer to 'burn myself out' and not linger when the time comes, whilst I am still functional!
These are difficult decisions indeed, but with life comes death- it is not only the old who die. I know more who have not reached retirement age than the other way round- not one had myeloma. Enjoy life while you can.
I was diagnosed with MM in 1999. Had a stem cell transplant December 27, 1999. When I was first diagnosed in June, the doctor told my wife I was so bad I probably wouldn't live till Christmas that year. I did the chemo and everything the doctor ordered. My mother-in-law was diagnosed the same week I was with pancreatic cancer. She passed in October the same year. At her wake, I broke my hip by a car door hitting me. I seemed to be in lot of pain since then.
I have tried every treatment the doctor has suggested. I am currently on Pomalyst. I get Zometa every 2 months. Just last week, I was hospitalized with a blood clot in my lung, pneumonia, and acute kidney failure. It will be 16 years in June. I still manage to teach school, act in theater, and various city functions that I am interested in.
This past week in hospital has left me strangely concerned about the longevity of my life. Seems my pain is worsened. Since I have been fighting this cancer, I have lost 2 mother-in-laws, a father-in-law and sisters, brothers, and my wonderful wife. I find the hardest part is being alone. I am going to retire from teaching this month. I am 74 years old. Must stay occupied. I am also children's minister at my church.
Aloha Steve,
First of all, my sympathies on the loss of your Mother. It is never easy to lose your mom - no matter how close you were.
Your excellent article really brought out some interesting responses from folks who are much sicker than you or I. We need to count our blessings that we have choices. For those folks whose disease is more acute or advanced, it is obvious they don't have this luxury.
My disease is very similarly advanced as yours. I am lucky to be at the beginning of this fight. What is relevant about the responses is that we constantly need to reevaluate our position on the subject.
For myself, I am driven to live long enough to see my children reach adulthood. During this period, I will sacrifice quality for quantity. Once they are grown, I believe my outlook will change, and I look forward to it.
No matter my outlook on quantity vs. quantity, I plan on making every effort to grab as much out of every day as possible. I hope to make it long enough to see my boys grow up, and then I plan on skidding sideways into my grave with a straight flush in one hand and a cold beer in the other.
Keep up the great writing! We appreciate it!
Aloha
Tom
I've told my people I don't want to be kept alive by machines. I'll take quality over false longevity. I hated the 23 days of my ASCT and the next 3 weeks or so of being cooped up and weak. I don't like being told what to do, just ask any ex-boss or my wife, and plan on living longer than my doc said I have. I want to be shot by a jealous 20-something husband when I'm 80, so I gotta be careful.
Thomas - As usual, as is the case in your columns, you offer some very useful insights into living with this disease. Hearing from others who have things much worse than I do also inspires me and helps me keep things in perspective.
Bob - We have similar desires on being kept alive by machines and how we felt during the ASCT. Not quite as sure about getting shot by a jealous 20-something husband though!
J. Paul Hughes - Surviving with this disease for 16 years certainly gives all of us hope who have been given the 8-10 prognosis numbers. I admire how active you have been and would venture that this may be a factor in defying the commonly accepted prognosis numbers. I hope your recent setbacks are quickly remedied.
Steve:
Thoughtful and beautiful writing.
I'm firmly in the quality-of-life camp and the farther out on the longevity branch (I'm at 10 years post-diagnosis as of last November), the more I come to accept that at some point I just say "enough": and savor the remaining time.
Steve,
I have followed your journey a little through the Beacon. Very sorry to hear about your Mom - hugs and prayers for strength.
Hubby was diagnosed a year ago with 50% plasma cells. He was set to have an autologous (his own cells, right?) transplant, was harvested, then sent home and since has had situations with two additional cancers. After 9 months off the Revlimid / Velcade / dex / Zometa therapy, he's back up to 30% plasma cells. He's back on that treatment and we are still looking forward to the SCT once a few of the cycles complete.
I guess I say these things because he and I have discussed quality of life vs survival. We take things a day at a time, usually, though I have researched for hours and hours as to the disease process / progress and it's not pretty. His is very aggressive, so we are probably buying time with the SCT, but we are ok with that as long as he can do his usual routine of reading, internet stuff, and music (he can no longer work).
We'll be glad when he doesn't have to wear a mask everywhere and we can go out to eat like people usually do, when he is done with his SCT and doesn't have to worry about the Hickman, and when we can be free of the bacteria-free lifestyle we've tried to follow for a year in preparation for the SCT. Our faith helps us cope with all the doctor appointments, additional issues, surprises, and frustrations. We are happy to be together, and have ways of coping with the stress.
I hope you can find fulfillment in whatever path you choose.
April - We are of like mind. I just hope that, if I make it to 10 years, I have similar beliefs.
Gina - I hope your husbands condition improves to the point where he can have his transplant and that the ASCT is as successful as mine has been. Up until I was diagnosed with mm, I always spoke of faith, family, and friends, but it wasn't until I was diagnosed that I realized I was merely paying lip service to that. I try to do better than that now.
Steve,
Sorry to hear about your mom. I don't have any major side effects with Revlimid. Some diarrhea at times, but try to be careful with my diet. Getting back to doing things I did before I was diagnosed – cutting grass, playing with my grandkids, lifting and carrying boxes, etc.
Quality of life is very important to me. I don't give much thought into dying, that will happen when it happens. Could be from mm, heart attack, or an accident. The primary goal is to stay in remission. When I see Craig, or Megan, knowing how I feel going in and listening to them during my visit, I walk out feeling I can live another 40 years.
Steve, Thanks for writing this column, it's a great contribution to the conversation about living with myeloma. It's a subject near and dear to me. Writing a column about quality of life, survival and mortality has always been on my short list, but my thoughts are just so all over the place. To J. Paul Hughes, you're inspirational, but I'm sorry you feel alone right now. You bring to mind what I say to folks -- "fighting cancer aggressively is not for the faint of heart." Neither, for that matter, is facing life's challenges.
Jack and Lou - During the 3 years since being diagnosed, I can honestly say that the thought of dying, or the manner in which I will die from this disease, crossed my mind only in the first few weeks of living with the disease. It has only been at my mom's funeral that such thoughts surfaced, which I am sure was due to the fact that she died from cancer. Otherwise, I have lived a pretty normal life since my ASCT, barring occasional fatigue and slightly more intense neuropathy.
Steve,
Sorry to hear about your mom. I pick quality over longevity. Revlimid worked good for me with no bad side effect during my induction therapy. After the ASCT and being put back on Revlimid for the maintenance, my body had changed and couldn't handle it. My white blood count was always too low and I would get neutropenia. Having to be careful so you didn't get infections and being extremely tired all the time was no fun.
After talking with my doctor, we agreed the best course was quality because I had a chance of dying more from the side effects of the Revlimid. There is no guarantee in life, so I enjoy my family and friends. I enjoy golfing in two different leagues. AJ and Linsey just had their 2nd little boy last week. I am grateful to be able to see them now. I do get sad knowing most likely I won't be there to watch them grow later in their school years.
I wish you all the best.
I was diagnosed in an emergency situation in November 2010 and had an ASCT in March 2011. After six months, I took Revlimid as maintenance for 18 months, but finally stopped because of the side effects. My counts were great and I went six months before they began to climb. Have been getting Velcade weekly or bi-weekly since, and my counts are again edging up. So, I wonder about the future, and if there will come a time when my quality of life will be severely degraded to the point that I might not want to continue living.
Hopefully that day is a long way off; there are lots of therapies to try first and maybe they can keep me going until there's a cure or something close to it. For now, I'm grateful for the good years I've had, being able to travel and share in important family milestones despite dealing with the limitations brought on by the meds and the five compression fractures in my spine. I like to think that I'll not give up easily; things looked pretty bleak four years ago, but I was lucky to have great support and to not fall into self pity or negativity.
Sherry - Is it safe to assume from your posting that you are not on a maintenance regimen now due to how you reacted to Revlimid? I have been lucky because, for the most part, I have tolerated Revlimid well in the 3 months I have been on it since my ASCT. Enjoy that new grandchild!
Ron - It seems that those (like you) who don't fall into self pity and negativity handle the emotional and physical challenges of relapse best. I hope I can do the same when the inevitable relapse comes. As you note, there are lots of therapies to try, and hopefully more will become available as time passes.
Steve - No maintenance therapy since January, I've been lucky so far no M-protein visible. I feel real good, get to golf in a couple different leagues. I can keep up on all my inside and outside yard work. Best of all, I can enjoy family – especially my two grandsons!! The scary part is you never no how much sooner the cancer will reappear, so I enjoy every day! Glad you are tolerating the Revlimid well.
Steve,
One of the things you talked about is the dying process.
I have been meaning to get someone interested in writing about this. It should be based on a survey of actual patient experiences. I think this could be useful for MM patients when they do get to the point of end-life planning (hospice etc).
Some MM deaths go relatively well, but some do not, and the idea would be to give people information so they could take action to improve the chances of a good death for them.
Sure, we want to focus mostly on living our lives, not worrying about MM, and living as long as possible (as long as QOL is good), but we do need to do the end-of-life planning too.