Me vs. MM: Practical Considerations
Two to three years.
That's what the first doctor told me the average survival for multiple myeloma was.
Not long after my diagnosis, I was making a list of things I needed to take care of while I could and, for all practical purposes, starting to plan my own funeral.
Fortunately, my second doctor was more knowledgeable about multiple myeloma, and between him and a lot of Internet research, I've since come to realize overall survival varies considerably and depends on a variety of factors.
While many people still only survive less than three years, more and more are surviving much longer and it is not uncommon to read of people surviving ten years or more.
As much as we want to be optimistic though, the truth is that most of us will succumb to this disease sooner or later.
Knowing this, I believe we have a responsibility to do some planning ahead of time that will help our caregivers as our health gets worse or make it easier for those left behind when we die.
This hit home for me recently with my father's death last month.
He had made several preparations ahead of time that made it much easier for my sister and me to care for him as he approached end of life and to handle his estate after he died. However, even with the planning he did, there were some things overlooked that are causing difficulties.
Given what I've learned through my father's passing and the planning my wife and I have already done, I thought I would pass along the following suggestions.
Make sure you have a will. Name an executor for the will and identify beneficiaries. Consider an alternate executor and beneficiaries in case not all are alive when you die. Be clear on how your estate is to be divided and be careful not to leave things unaccounted for, particularly if one or more of the beneficiaries are not alive when you die.
Establish a financial power of attorney. This is a document that appoints someone to handle your financial affairs in case you are unable to.
Establish a medical power of attorney (sometimes called a healthcare proxy or living will). This is a document that stipulates your medical wishes and authorizes someone to make medical decisions on your behalf if you are unable to.
Set up a trust or similar method for protecting your estate so it does not need to go through probate court, which can be time consuming and costly. By putting your assets in a trust, the property in the trust shifts ownership to the named trustee(s) upon your death and avoids going through probate.
Make sure you have beneficiaries identified for life insurance, retirement accounts, bank accounts, safety deposit boxes, brokerage accounts, stocks, bonds, etc. These are typically specified by transfer-on-death or payable-on-death designations. Without these designations, these items are also subject to probate.
Provide directions for your funeral, including how your remains are to be handled, whether you want a viewing or a funeral service, where to be buried, etc. Also arrange to cover the cost of the funeral and burial site so your survivors are not required to do so.
Pay off your debts if possible. Otherwise, provide directions in your will as to how the estate should be used to settle debts or other final expenses.
Get rid of excess baggage. Most all of us have collected a myriad of "stuff" in our lives over the years that should not be left for our survivors to deal with.
If you have pets, make sure you have arranged for their care following your death.
Keep all official documents someplace safe and leave clear instructions on where to find all the information your survivors will need in the event of your incapacity or death. Consider providing copies of the documents to the appropriate people so they know your wishes and can act on your behalf accordingly.
Please note, I do not have a law degree or financial degree, so anything I mention here is from a layperson's perspective and you should consult someone with the appropriate expertise for your specific needs. I'm also relating this as a U.S. citizen. I am not familiar with how some of these topics apply to other countries, but I would expect there to be an equivalent in most cases.
Finally, consider consulting an estate planner to help with this process. However, ask around first and find someone that comes well recommended. If mistakes are made or items are overlooked, much of your planning can be for naught.
I realize this is one of those gloomy topics people typically try to avoid and don't like to discuss. However, ignoring these considerations or pushing them off to later just runs the risk that your survivors, who will already be dealing with end-of-life decisions or your passing, will be stuck with the burden of handling these additional issues.
If there are other considerations you think would be useful, please share them.
Peace, and live for a cure.
Kevin Jones is a multiple myeloma patient and columnist at The Myeloma Beacon.
If you are interested in writing a regular column for The Myeloma Beacon, please contact the Beacon team at .
Kevin:
This advice is pertinant to anyone, whether or not they have MM.
And, I must take issue with the tone of your column that suggests that MM should be considered a death sentance. First of all, such beliefs are counterproductive. You hear time and again that a positive attitude is key to fighting any kind of disease, but espeically cancer. For me, a positive attitude goes far beyond psyching myself into believing that I can beat this (I am an MM patient who was diagnosed 6 years ago - so I've outlived the dire mortaility predictions I received upon diagnosis). I truly believe with every fiber of my being that I will beat this thing. More and more treatments are making overall survivial rates longer and longer. MM is not curable, but it is emminantly treatable. 20 years ago, Magic Johnson announced he had AIDS and it was considered a death sentance. Magic is alive and well....having benefited from new treatments that weren't known at the time. Same is true with many AIDS patients. I truly believe the same will be true for MM patients.
So while it never hurts to prepare to meet your maker, I think it should be done with the attitude that we all die eventually...not that death is imminent just because we have MM.
Final note: The best advice I received when I was diagnosed was: "don't believe what you read on the internet." There is a lot of info on the internet that does not keep pace with current treatment results. Had I taken heed of everything I read when I was diagnosed, I would have thrown in the towel long ago.
This is a very informative and useful article. I was diagnosed about 3 years ago by a very good MM doctor. I couldn't believe it so I went for a second opinion to another prominent MM doctor. This guy gave me no hope. Basically he told me to go home and star wrapping up my life affairs. All he was talking about is old statistics. I don't need anybody to sugarcoating the facts for me but I don't need anybody to kill my hopes either. I came to the conclusion that doctors do not know everything. Every patient is unique. Two patients with the same disease and the same treatment can have different outcome.
However, I did take care of my will, healthcare proxy and power of attorney. Its always good to have these things in order.
Thanks Kevin.
Michael
It is hard to believe that doctors are still unnecessarily shaking patients and caregivers up using outdated stats and stressing how their cancer is incurable.
BUT, I find most info on the internet to be quite credible -- at least the information at the major myeloma sites and the various regulary updated patient blogs. Most give an accurate, up-to-date picture of what it's like to live with our cancer.
I will try and keep this short. Lots to address here. First, like Mike I thought Keven's article was a great reminder. I agree with Ed. Being positive is so, so important. But I don't think it cures us. And while it may help, it doesn't make our pain go away.
Those of you who read my column know I try and look at things objectively. Even so, I'm able to stay up and busy and optimistic most of the time.
People, people. STATS are guidelines to help us plan. You can spin the same numbers many ways. Here's an example. Did you know that the median life expectancy for all myeloma patients has only gone up one month--ONE MONTH--over the past three or four years? From 43 to 44 months. That's a fact! So what's a doctor supposed to say? To a standard risk (I believe that's true, right Kevin?) younger patient like Kevin, he should have softened things by telling him that that broken out of the group, the median life expectancy for someone like him is more like seven years--and climbing fast. A decade or more is a distinct possibility if you responds well to novel therapies and can stay otherwise healthy. That's you, too, Ed!
But what about a 78 year old diabetic? Or someone with chromosomal abnormalities who is less likely to respond to treatment? 44 months may even be high for some of these folks.
So it is vitally important that doctors learn to break these numbers down for their patients. They owe them that much!
I'm glad Kevin seems to be doing OK. You too, Ed. And I have responded well to RVD therapy after last year's close call relapse.
But others aren't doing so well--and some are dying everyday--despite the new meds and therapies.
So much for keeping this short! Thank God for the internet! We couldn't participate in an useful exchange like this any other way...
Feel good and keep smiling! And keep writing and sharing your feelings Kevin!
It was both sobering and depressing reading this article. It is sobering because what Kevin said is abosutely correct not only for MM patients but for healthy people as well. Everyone will have that day at the end and no one is guaranteed with any amount of time on earth, sick or otherwise. It is depressing because the subject was highlighted in such a way that it obsecures the hope everyone of us, again sick or otherwise, relies on to live a meaningful life.
Human emotions are a strange thing in that logic does not always prevail. That is why the general public does not like the prospect of eventual inevitables to be thrust upon them. They live their lives as if the Sun will always rise in another day. It is no different for MM patients. A patient depends on hope, even if it is sometimes false, to muster positive attitudes and courages to fight what is ailing him.
And let's not forget all hope is not lost in the fight with MM. Human knowledge does not develop in linear fashion. Rather it develops exponentially. It took years to sequence the first 1% of human genome merely a decade or so ago. But now it takes less than a week and just $1,000 to sequence the 100% genetic sequences of a human being. We don't need a cure if it is too much to ask for. We only need one success out of the current crop of developments or a combination of the existing or new medicines to be able to stop the progression of the disease much like what has been accomplished for AIDS patiens as Ed pointed out.
Let's pray for hope!
Well done, Kevin! Also, many good points made above! Do not forget that many of the statistics, used by some of the Doctors, are decades old. It will take years to extend the average statistic survival rate. The one thing that I would like to add is that many of us MM patients may live for many years, so, do not be afraid to live! It is always good to have things in order, as we all should do, but it is also OK to plan to be around for another day or two! Once you have things in order, Go ahead, and take that class! Go ahead, and learn to play what ever it is you want to play! It could help you live longer! (MM/2002)
Hi Kevin, I am so sorry to hear of the loss of your father, and please accept our condolences. It is a huge adjustment to lose a parent, even when we are adults. It is always good to be organized ahead of time since anyone at all could be in a car accident, or have some other tragedy strike. Really, everyone of adult age should have a will.
Once you have your plans organized, you can have that peace of mind knowing that the family would not be put through undue extra stress when there is already enough other stuff going on emotionally. Hopefully your advance planning will not mean that anything tragic will happen though!
I have problems with the 'stuff' department, and try to donate and recycle extra items to sales etc. In the spring we have book sales, fabric sales and the like...the trick is to donate to them but not shop at them in return, although that is easier said than done. I think that many people never give up a lot of their items until they literally move house!
The month after I was diagnosed my sister came to stay with me and help me with much of what Kevin talked about getting done. At that time I did not know, and who does, if I would be gone in just a few months or if I would be a multi-year survivor so there was a sense of urgency to get it done. My sister works for an investment brokerage and deals with the issues Kevin talked about all the time in her work with their clients, and the difficulties that happen when these things are not done. Things can be really, really difficult when planning is not done and the survivors are not in the best emotional state to deal with them post-mortem. My sister was a huge help and got done in a few days what would have taken me at least a month to get done. It can be tough talking about these matters though with a close family member. The one thing I did not do and just couldn’t go there was what to do with my body after I died. I still do not want to touch that one yet.
As far as maintaining a positive attitude, once I got over the initial shock of diagnosis and getting past the dated information out there on life expectancy, I learned I could be a 15 year or more survivor or be gone in less than a year, but with current medical practice MM does get everyone in the end unless something else gets you first. And a cure in the next decade is a realistic possibility. If I am going to be a fifteen year survivor, especially VGPR or CR years, I just cannot see living those years being in a depressive mood worrying about the grim reaper of MM being just around the corner for me next month. What a waste that would be. People do not like being around depressive people. I have had relatives that were constantly worried and depressed that their health may fail at any moment, and they lived to an old age but could have lead happy lives, not a life I want to live. I am in VGPR and enjoying life as best I can, last year was rough one.
Ed,
I too believe we need to maintain a positive attitude, and I tried to convey that when stating more and more people are surviving longer. But I was also being realistic that unless a cure is found in the near future, or MM becomes treatable as a chronic disease, most of us will die from the disease - very gloomy topic as my last paragraph states, but I was using this as the reasoning for why we should make sure we have plans in place. Continue to keep that positive attitude and believe you will beat this disease - I hope everyone has that attitude.
Mike,
I can understand how someone that doesn't treat MM regularly could have outdated information but find it amazing that a prominent MM doctor would provide the prognosis you received. Don't know what doctor you eventually ended up with, but glad to hear you didn’t heed the "no hope" prognosis and have been going for three years. Also glad to hear you're putting things in order.
Pat,
I'm with you, most of the information I find tends to be relatively current and credible, and like you I settled on several preferred sites that can usually address most of what I'm looking for. I think newly diagnosed patients have it harder though because they haven't researched MM enough to easily filter the good from the bad.
I like your observation regarding stats (particularly since I have a math degree) and agree that the numbers can be twisted many different ways. And yes, I'm a young 54, with no high risk markers. I'm not even sure if my first doctor knew what the risk markers were, but my second doctor did and actually included that in his discussions with me.
Finally, feel free to make lengthy responses, I always enjoy reading your posts.
Ben,
I really thought a lot about writing this article, basically because I knew it would be as you said, sobering and depressing, but decided to go with the hope it could help some people and their survivors in the long run.
It's interesting you bring up how no one is guaranteed a long life. When people learn of my cancer and that it's currently incurable, most of them at some point make a statement to the effect "hey, anyone of us could get hit buy a car and die tomorrow". I know they mean well and this is meant to be a comforting statement, but for me, getting hit by a car takes you unexpected - not quite the same as knowing there's something other than old age actively working to kill you, perhaps within a few years.
But enough of the depressing stuff. I agree we all need to keep our hope intact and that given the continually increasing rate of advances in treatment, long term survival and an eventual cure is inevitable!
Ted,
I agree about how it will take a considerable amount of time for statistics to reflect more current results - kind of like a batting average, once it gets low it takes a long time and a lot of good hitting to get it back up again. I also agree we should continue to live - I recently posted (somewhere) that it's taken about a year, but my wife and I are now starting to make longer term plans again - what a joyous change.
Nancy,
It has been difficult losing my father (my mother died 15 years ago), particularly realizing that my sister and I are now the oldest left in the family tree. My wife and I are definitely feeling a lot better having our plans in order, though it took my MM diagnosis last year to kick start us.
I too have a lot of stuff, mostly tools, electronics, books, and sports, though I'm getting better at getting rid of the excess or the useless things. Going through my father's estate and seeing how much he's collected over the years has helped emphasize the practicality of living simply.
Eric,
It's great you had a sister that could help you, though I can see that could potentially be a bit harder emotionally to work through. Interesting about the difficulty deciding what to do with your body - I've known for some time I wanted to be cremated and my ashes buried - don't have much use for graveyards or a columbarium, just use me to fertilize a tree. Also glad to hear you're another one with a positive attitude and want to live to the end, however that occurs.
My doctor wouldn't give me a date range on prognosis of a worst case scenario. Instead he was positive and chose to take things a day at a time, citing that everyone is different in their handling of Multiple Myeloma. Later I saw one of the top professionals in the US in regards to both Mutliple Myeloma as well as stem cell transplants and in my first visit he complained that my doctor didn't do enough tests for him to make an accurate analysis but still said I had 5-7 years to live. He wanted to do a transplant ASAP. Went thru a harvest but not a transplant because it wasn't necessary as my M-Spike is now normal thanks to an aggressive approach to my chemotherapy and I have been off chemotherapy since last July, only taking Revlimid as a maintenance therapy.
I later attended a support group of people who have lived up to 18 years with the disease with several who never needed a transplant. There's success stories out there. It's important to find a doctor and medical team who will go to bat for you and be your advocate.
Encore! Encore! for Ben S.
Hey Ed,
AIDs was a death sentence for thousands when Magic announced. And for many, many patients still after he announced.
Magic is one lucky SOB for several reasons.
One, he agreed to help the Lakers stay under the CAP, which meant he needed a new health exam for Lloyds of London to insure him for the money he was waving forward,and that resulted in his AIDS being detected EARLY, at a time when folks were dying like flies.
Two, his doctor was David Ho at Cedar Sinai. again, Extremely fortuitous!!!
At the time, Magic was diagnosed, no one was treating AIDS before the T-cell count dropped to 200..David Ho, went against the 'standard of care' and believed, based on the pattern in patients he was seeing, that you should treat the virus early..hit hard, hit early was his thinking...and he was riiiiiight!!! In fact, David Ho, went on to develop the mathmatical model of viral progression which proved how the plasma viral load was logrithmic vs linear progression. When Ho presented that mathmatical model the room was packed with over 1K MD's at the Conference on Retroviruses and Opportunistic Infections that year, 8 huge screens all around room like he was a rock star. Ho went on to become Time Man of the Year and he now heads up the Diamond Research Institute (ElizabethTaylor).
Third, Magic had the money to use the drug cocktail Ho recommended, because the insurance company was only paying for therapy with low T cell counts, and Ho was not treating according to the 'standard of care' Point of fact, if I recall correctly it was not being called AIDS then but rather gay related auto-immune deficiency, so therapy early was 'experimental' if your T cell count was over 200.
In a sense I suppose you could say by being generous and helping the team, Magic didn't just help the team get KobeBryant , but averted the fatality of his disease, at the time. Outstanding good fortune!
And, if anyone wanted to avoid a death sentence like Magic, you need to do something for the team and then have a brilliant doctor and gobs of cash!!
I don't have Magic's cash but, my MM was caught early and I have selected a brilliant MM expert and know that God's will, will not take me where his Grace cannot keep me.
OH and about the internet,
The internet is full of excellent information, if you listen to seminars and/or webinars, where national and international MM experts present at the major professional medical meetings...i.e. ASH, and ASCO for MM.
IOW's it's not the internet it is the source that is used i.e. sites you visit.
No different than the library or newspaper...there are encylopedias or fiction books and then there is the NYTimes/Financial Times vs the Post/Enquirer.
On the upside: knowing you are dying (even if it is years away) certainly adds to today, doesn't it?
That's what I am finding, anyhow. I too did the "research" the first few days after dx, and I cried, got suicidal, and ended up on meds. I too got hold of my lawyer and did a will. Got hold of my local funeral home and started payments on my "forever home." Railed against the injustice of it all.
Now, some 15 months post-dx, and with a stem-cell transplant and Kyphoplasty behind me, life's "new normal" has a real vibrancy to it. Yes, there are major storm clouds always visible on the horizon, but so what? I have today, and it is totally awesome (most days).
The bible's teaching to live for today really means it... and I now try to do so as well.
Hi Kevin!!
This was a tough topic to write on and you did a great job!! And to have made posted the thoughts publically takes real strength of character.
Hearing an expiration date can make you depressed but eventually you realize you are more fortunate than others, who do not know to 'carpe diem' because they are thinking they have a long future. Whereas we, get to truly focus on and explore the things we really love and do things that bring us immeasurable joy. IOW's we no longer take each day for granted but live it to the fullest. Those other poor souls, miss out on all that joy cause they think they have time, when they just might have a heart attack while driving and expire suddenly and never experience the true joy of living. So, knowing your time is not unlimited is priceless.
Sorry to hear about the loss of your dad. Both of my parents are deceased.It's tough losing parents..we lose our childhood and become adult orphans even though we thought we were full grown adults until that moment, :0. You may find the writings of Gibran helpful at this time. His thoughts on grief and sorrow were uplifting to me. I am paraphrasing his writing...he said that your grief and sorrow is only as deep as the love you have in your heart for the person. And when you are sad and missing them, think of the joy and treasured moments you shared as that is what you are truly missing. When you do that it lifts your sorrow. Just just recalling their quirks, their sense of humor and all the love and happiness you shared pushes the grief away and you are embraced instead with all the love in your heart.
It works.
Kevin: Another great column! It is a difficult subject, but one we all need to address regardless of our health. Many of us, like me, have only partially completed these tasks. We tend to procrastinate...
I have most of it done, but I need the "trust". For those not in the U.S.; if you don't have your assets in a trust, the state you live in charges very expensive probate fees to process the assets in your estate. It's been on my list of things to do...need to move it up to the top of my list. Thanks for the reminder.
John F,
I'm doing similar to you, trying to go without the SCT if possible. Good to hear that you've been able to keep the M-Spike down without one and it's very encouraging to hear you've met people that have gone so long without one.
John S,
Yes, life has certainly taken on new meaning and I definitely approach each day different than I did before being diagnosed. I also find it's much easier to motivate myself to do things and avoid a "maybe later" later attitude.
suzierose,
No doubt, money and connections can definitely help get better treatment - particularly trial or experimental treatment not paid for or covered by insurance, or if you want to go overseas for treatment. I would never have been able to receive the treatment I've had so far if it hadn't been covered.
Thanks for the condolences. We had my father's memorial service yesterday, but approached it as a celebration of life. All-in-all it was a fine day and as I thought about it, decided that's how I should approach every day, as a celebration of life, and live accordingly (perhaps a topic for a column in the future).
Nancy D,
It's very easy to procrastinate on tasks like these. We'd done some planning years ago, but it took the MM diagnosis to get us to go back and revise/complete everything. Even still, we've learned more with my father's passing and discovered one or two more things to take care of. It's unfortunate there's so much to understand and there really isn't too much in the way of instructions to take you through everything - no wonder there's a need for estate attorneys.
I had MM. Operative word; HAD! I do not have it now. Don't know if I am cured. Don't care to dwell on that word at all. If I get it again, I will deal with it with the same alacrity and prudence I did the first time. Was out of the net for a year with that crap. It's now time to put things back in motion that were on hold; hence, remodeling the kitchen, bath, and building a pool (still can't swim cause of the port, dammit!).
Had all the bits and pieces of this article some 17 years before diagnosis (got MM at 45). Did not make a will, executors, lineage, etc., because I got sick. I did all that IN CASE I got sick! Lawyer up and get it done, folks. It takes a few hours and some signatures. If your life requires a lawyer anyway, it should already have been done!
Other than PN (horrid, but manageable), it's time to live, live, live as Auntie Mame advised...Life's a banquet and most poor suckers are starving to death!'
Ed Wolfman:
I'm with you on this never give up the ship, I to have out lived the inital guesstimate the Practicianers gave me (3-5 yrs) I was diagnosed in 2004 treated for 10 months with Thalidomide & Dex then taken off all cancer drugs ,I have been in remission since then and so far continue to get good blood test readings (no more bone marrow extractions) - about a year ago I had a PSA reading of 9.8 and was diagnosed with Prostrate Cancer had Prostrate destroyed with Liquid Argon -Prostrate cancer was sucessfully destroyed during this proceedure - my health is not the best but I am still enjoying doing some of the things I like to do such as tinker with my Old Cars & Trucks , mow the south 40 with my new Kubota Tractor, have a few horns of Grog with my buddies at the local Brew Pub. I of course wonder about the Stem cell treatment (which I have never had done)? things like would it be a good idea to have the stem cells extracted (per John F.)& stored if so how long is the shelf life on stem cells ?,I know Blood is only stored for a limited length of time. N.G.
Patd95,
Great attitude and like you, I'm now getting back to all the things that got railroaded with my diagnosis. When were you diagnosed, and what treatment did you receive? Also, what type of port do you have? I also have one, but was told I could still swim. I've even been playing hockey with it - just need to make sure it's protected from direct impact.
nipon ginko,
I think you, and Ed, and most others make it pretty clear that the best way to approach this battle is head on. It's great to hear stories like yours where you've been in long remission, particularly in this case without a SCT since that's also what I'm shooting for. It stinks that you've also had to deal with prostate cancer, but glad to hear it was treated successfully.
I had my stem cells collected for use in the future if needed. At the time, I also asked about how long they could be stored and was told up to 10 years, perhaps longer.