Birds In Spring: Thoughts About Survival
Getting a multiple myeloma diagnosis just stuns you.
That is, once you figure out what it is and what it means.
I’d guess that most people who are confronted with the news probably have never heard of myeloma. I can say that I’d heard of it, but knew absolutely nothing about it. I wasn’t even sure it was cancer.
Two things about myeloma stuck in my mind in the aftermath of my diagnosis in 2006: Incurable. Almost invariably fatal.
It didn’t take me long then to come to my senses.
When you’re told you have an incurable disease that’s usually fatal, you kind of sit up and take notice.
One of the nagging questions in the back of my mind was: How long do I have?
After all, when you strip away all the things you hear from patients, from their loved ones and caregivers, from the cancer researchers, from those thoughtful and encouraging things you read about living with myeloma, it’s all about survival.
As we approached my second appointment with the oncologist-hematologist I’d been referred to, I found I couldn’t bring myself to ask that question. So, I left that up to Linda, my wife.
When I was diagnosed, the conventional medical wisdom was that people lived an average of three to five years. That was already being challenged, however, by the impact of novel drugs and therapies.
In May of 2006, the oncologist to whom we posed the question about my survival gave me a few years beyond the average of the time.
It wasn’t that long ago that survival with multiple myeloma was not so good.
It’s been getting better lately.
Multiple Myeloma Opportunities for Research and Education (MMORE) states on its website that survival rates are now more like four to ten years.
Well, there are, after all, no guarantees in life. But, that doesn’t seem like a lot to me. Especially when you’re just past 60, as I was at diagnosis.
The Roman philosopher Cicero looked at survival this way: “No one is so old as to think he cannot live one more year.”
As a number of us myeloma patients – dare I say, survivors – live longer, the dynamics of the disease have changed a bit.
Dr. Sergio Giralt at Memorial Sloan-Kettering is one of those myeloma experts who have been so helpful to me. Dr. Giralt has gone out of his way at times to help me understand aspects of this disease and treatments.
For a lot of people with myeloma these days, he says, something else is likely to get us before the disease itself does.
He recognizes too, as I do, that there’s another side to this.
There are still a fair number of people who just don’t make it very long after their diagnosis.
A neighbor with myeloma, who lived only a few blocks away, and whose wife works with Linda, died earlier this year. Even with all the new treatments there are today, he barely made it two years.
The contrast between those who don’t really respond to treatment and those who are longer-term survivors must be striking to the loved ones left behind when someone passes away in a relatively short time.
It would seem to me that it would be hard not to get a bit resentful of the long-term survival of others when someone they care for is taken away so quickly.
We all do the best we can in living with this disease.
I have great respect when I hear stories of those who fight so hard for survival.
At the same time, I’m aware that, getting past the bad luck of getting myeloma in the first place, there are those who don’t respond well, and who don’t adjust or cope well.
I may respect them even more.
I’m not sure that others fully understand or appreciate the struggle for survival that most all of us living with myeloma face.
The challenges – mental and physical – can be great at any given time.
It takes a lot of courage for myeloma patients to stand up to them.
When all is said and done, the only thing we have left in myeloma’s wake is our dignity.
Lou Ganim is a multiple myeloma patient and columnist at The Myeloma Beacon.
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Thanks for your comments. Another thought for survival is attributed to the cancer statistician Doll “Death in old age is inevitable, but death before old age is not”. For those in "old age" the cancer diagnosis is simply a reminder that we all must leave this world and the MM is the method of departure. All the research and search for a cure is directed to those of us who do not as yet consider themselves to be in old age.
This is also a burden that only a MM patient can bear. Family and friends cannot experience an incurable disease vicariously. I am envious of them.
Coupled with the uncertainty of the prognosis -- even if one is "low-risk" and feels well -- are concerns about what happens if you can no longer work - and when that may occur. Health insurance? Life insurance? Mortgage insurance?
The excitement and promise of future plans is also down the toilet: retiring to a mountain resort town; traveling around the world - it is all somewhat wishful thinking. And I am not big on the bucket list mentality.
Contributing to a 401(K)? Good idea for my family - but not for me anymore?
And then there is that damm question of treatment, which is also a burden, because there is no set path: Is less more? Or is more more? I am responding well - but do I really want to go through protracted treatment -- at the risk of changing the profile of my disease - to achieve CR, which is itself a misnomer? Or should stop at an MGUS state and see whether I can keep it under control?
Will I spend the rest of my life obsessing about evey single blood test?
Then there's anger: If some patients live for 20+ years, why isn't there a damn cure? We can't be that far off, can we? What is missing? Adding one more reagent to Velcade might be good for FDA approval, but I see little that is curative in that approach.
This disease is really many diseases. And it would be nice to know which one I really have.
And then there is dignity. My disease was discovered by accident; no real symptoms. And I live my life normally (except for the noose around my neck). But increasingly, I find myself barraged by phone calls from medical centers and requests for appointments - and the tone seems to be: you are screwed, so we can call you whenever you want, inconvenience you as much as possible, and treat you like a hapless patient that must willingly comply with everything. That pisses me off. I have to meet for an hour next week with someone to discuss stem cell collection -- even though I am not getting a transplant. It never ends.
And with respect to prognosis, I can spin the numbers and predict more than ten years for me - -but then I wonder how much of that time will be fully consumed by chemotherapy and being filled with various blood products..... How fun...
And then there is this website -- which I keep swearing myself off of -- because it is mainly about misery and pain. (Yes it is).
Well said, well said. (From someone who is coming up on her 8th anniversary of being diagnosed with myeloma.)
The day my husband was diagnosed with MM "OUR" entire life changed, my husbands, mine, and my two daughters. I remember asking the Doctor what's Multiple Myeloma ? Is that some form of cancer? Is it serious? He will be fine right? And she just stood there as if she heard none of my questions with this bizzar look on her face that I will never forger. After the first two weeks in ICU because of renal failure, they started treatment. I spent hours & hours educating myself & getting more & more scared. My husband didn't want to hear or know anything, he would not even talk to any of the doctors. He was in complete denial. The doctors said 6 mounts to a year! I felt so alone already. I had him transferred to a MM specitly unit at another hospital an that's where he has had back surgery, two stem cell transplants and now continues to receive chemo after two 1/2 years in total remission. We will hit YEAR 7 this November ! My husband talks to the doctors these days but only to tell them jokes. Still wants nothing to do with any medical decisions. Caretakers and love ones also have it tough.
hI Lou, I like quotes too, and what Cicero said rings true to me also. I just plan about a year in advance, which is all I ever did anyways! There's no doubt that the myeloma diagnosis can throw one RIGHT off one's game, plus more! We are fortunate if we can get past the beginnings of it with dignity and improved health. Hope you are doing well! I always really enjoy reading your columns, and you raise really important issues too!
Hi Lou,
Enjoyed reading this. My husband was diagnosed in 2008 and all of the issues you wrote about ring true. There are so many ups and downs and my husband like some others has relied on me a lot to be his advocate as he is still too stunned at times to deal with it. We too have a friend who is in a hospice aituation right now. As you relate, I have had tremendous respect for what she has gone through and wonder how she has felt as my husband has not had it quite so bad YET!
I like the Cicero quote-so true.
Thanks for putting it out there. So many are fighting hard- gives me encouragement. My best to you.
Hi April - Thank you. Gary, I know what you're saying...unfortunately we don't come with a "use by" date.
Joe -- Great stream on the uncertainty, conflict and change a myeloma diagnosis brings to one's life.
Pat -- I think that myeloma and all that comes with it is hardest on the caregivers and loved ones. Seven years so far is great. I hope you guys have many more.
Another smart column, Lou. Hearing the common MM outcome would be one hell of a shock. I fail to understand how so many doctors, such as described by your readers, can't talk like human beings to one who has just been given the new, and then won't take the proper time to answer questions and offer reassurance and hope. At the very least, they need to have assistants who can do this. I have had a surgeon (for another condition) who does not have a comforting bedside manner but does have an assistant he turns everyone over to for the long discussions and question sessions. I give the surgeon credit for his awareness that patients need support. Also, I still hope you bind your columns in a book with a preface, etc. Every oncologist could give the book to their patients to have the benefit of your insights and wise words to give to patients and their families. Doable???
Good article. I have been doing a lot of research as I was just diagnosed at age 41 and with the IgA type. I am vey hopeful that I will have a good response and be able to have a longer life span. Who knows where we will be in 10 years. Maybe there will be a better way to manage MM. Thanks for your writing.
Hi Nancy -- Always good to hear from you...I agree -- it's hard to have "game" when myeloma keeps throwing stuff at you...
Mary Lou -- After my diagnosis and my early treatments, it took me a long time to take control of things on my own...for so long, I relied on Linda for all that, and she stayed on top of everything. But you know, in those earlier days (actually it covered the better part of two years), it took a lot off my mind because she was in charge and I could do whatever was necessary to survive as best I could.
Hi Susan -- So glad you dropped in and thanks for your perspective -- it's a really good point. And yes, you are right of course, I ought to do a book about this.
Hi Michele -- Thank you for your kind words. I hope too that you respond well and continue on for many years. You are so young compared to most of the myeloma patients, although they say we're seeing more and more younger people being diagnosed. Someone said recently that they were only 29 when they were diagnosed. Good luck to you.
Hello Everyone,
I was diagnosed with MGUS a few months ago (low risk) no biopsy necessary at this time. It was discovered when I saw my DR about a bruise on my leg that hadn't healed for months.
I still have the bruise and no explanation for it, I also went to the dentist for removal of a bridge and my gums were very irritated and it took a few months before it healed.
Anyone experience anything like this? I'm thinking of getting a second opinion because I've been feeling tired lately and short of breath at night too. Am I being paranoid?
Thanks
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