Pat's Place: Living The Life Of An Average Multiple Myeloma Survivor
One week ago, I celebrated an important milestone: I have survived 43 months with multiple myeloma.
What was so important about 43 months? That was the median life expectancy at the time I was diagnosed.
It is only human nature to immediately ask the question, “Doctor, how long do I have to live?” after you learn you have cancer.
My Mayo Clinic oncologist, Dr. Steven Zeldenrust, was forthright and honest with me when I asked him that question back in the spring of 2007.
Dr. Zeldenrust said that the average Stage II multiple myeloma patient lives 43 months. Undergoing a stem cell transplant wouldn't necessarily extend that number—nothing would.
I didn't realize it at the time, but the prophetic part of my visit that day wasn't learning my life expectancy. After all, I am here writing this column, alive and well, as I enter my 44th month.
No, the important thing about what my oncologist shared with me that day is this: I am an average multiple myeloma survivor.
I wasn't Stage I or Stage III—I was Stage II. My cancer wasn't progressing quickly, but my multiple myeloma had been around for a number of years before it was discovered. I had some bone damage, but my kidneys were still OK. And I was fortunate to not have any of the negative genetic issues that can make multiple myeloma even more difficult to treat.
I wasn't exceptionally lucky—nor was I unusually cursed. But a combination of the novel therapy agent Revlimid (lenalidomide), combined with dexamethasone (Decadron), was working for me.
Except for the fact that I am ten or fifteen years younger than many of you, I am the average multiple myeloma survivor—and I'm still alive today—even though the life expectancy numbers from less than four years ago say I shouldn't be.
Good news for me? Heck yes! But it is also good news for all of you!
Recent studies are indicating that our life expectancies have increased more than a year or two compared to my initial prognosis. But ongoing studies are likely to show even longer life expectancies.
Barring a serious and unexpected complication or unrelated catastrophic event, I will likely live longer than a year or two. I have yet to try a number of novel therapy agents that are currently available to me. I haven't had a stem cell transplant—but my cells are harvested and on ice, just itching to be used.
There are also newly developed, experimental drugs to try. If those stop working, there are dozens of combination approaches using two, three, or more of these same drugs, which may very well buy me some more time.
One or two more years? No way! I'm starting to think I'm going to be around for a long, long time.
All of which means most of you will be too. And that makes me very, very happy.
Feel good and keep smiling! Pat
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Thank you for your upbeat way of looking at statistics & those defining prognostics that researchers/doctors love: "median" and "average."
We MM people are all so very different that who knows when each of us will hit a wall in treatment? I am grateful for the novel drugs coming up and those currently in use. Since most of the time I feel just great & sparkling, I have a difficult time with this diagnosis. It's also a heady thing to think I had this years before diagnosis & nothing showed up on annual blood tests until Sept. 2008. As for your transplant on hold, for me the ASCT kept me off meds for about a year, and it was a big disappointment that it couldn't have lasted longer after 3 months of work at the hospital. Now with Rev/dex to control MM that shows at less than 1 I face the astronomical expense of this drug. Still, I too believe I will live a longer time than what the articles say. I remember my doctor saying something like seeing me in "10 years."
Suzanne-
I'm sorry your SCT only worked one year. Discouraging. Good thing there are so many novel therapy drug options available--along with a number of older, "tried and true" standards. Let's make a date to meet for dinner in 2020! Pat
My wife is in the same boat as you and has had the same treatment except she took Velcade with the rev/dex. she is now 50 and visits the doc. Every 6 mos for visit and Zometa.
Her only complaint is severe nerve damage in her feet which bothers her more in the evening.
She is also enjoying the possibility of a long life with MM.
Very encouraging news for you and for all of us challenged with MM.
Here's to another 10 years...and beeeeeeyyyyoonnnnnnnnnnnnddddd....
Pat - great news for you and your family!!! I have MGUS, so I have not developed in MM and hopefully never will, but I an encouraged by your book and your articles - so, please keep them up for all of us that need your advice and encouragement! Keep up the upbeat attitude and continue to fight!
I feel the positive "vibe" out there and it helps! Thanks for sharing, all!
David, give my best to your wife. I also have numb feet and it is worse at night. My hands also are stiff and cramped. That's worse in the am. A small price to pay to be able to enjoy this perfect day (mid 70's and not a cloud in the sky) here in beautiful Weeki Wachee.
I spend two days in cold, rainy Scranton, PA. Then returned here to unusually cold (for Tampa) temps. I could really feel it! My back and hands were stiffer than normal. I could feel the "hole" in my hip and missing ribs. These warmer temps are welcome. Never thought a former "musher" (we had 8 rescued sled dogs at one point and rode his and her dog sleds) and ski instructor would be afraid of the cold. Guess multiple myeloma can lead us in unexpected directions--trust me, I never dreamed I would want to or need to live in Florida!
Pat
I remember as I was doing "research" on our treatment for Dave, I learned that there were indeed long term survivors and the number was growing. The statements made regarding the research of MM was that the # of survivors was "medically insignificant". Meaning that, that there were not enough long term survivors for anyone to make sweeping claims about a particular treatment course. I told Dave, "while it may not be medically significant, it would be personally significant, if you were one of those people." And that is the point of view we took throughout our journey. Its a good feeling to see this paradigm shifting. More and more are making it beyond the "averages" and then some.
Some of us in the MM community make jokes about finding MM survivors. We say, the reason you can't find them is they are out living their lives! As well they should. With the advent of tools like the Internet and great sites like TMB, we are meeting and hearing about those who have beat the odds and it feels really great.
I'm happy for you Pat!
Thank you so much, Lori! As some of you know, Lori is an outspoken caregiver advocate. She promotes aggressive action and demands excellence. Dave is a lucky guy! Pat
I enjoy your articles. I'm new to MM and I was interested in your comment about not having a SCT yet. Is there a medical reason why you haven't had one? I am scheduled to have a SCT in January 2011 but I'm wrestling with the recommendation. I was also told that it would not extend the length of my life but it would improve its quality, whatever that means. I would appreciate your comments.
Hello - my husband was dx in Feb. 08, he was 48 and our 2 boys were 3 & 5 at the time. His primary GP advised me to "go home & get his affairs in order". I left the hospital broken. Well that was almost 3 years ago & Scott is alive & well. His kidneys were failing at the time of DX and he as on dialysis for a year - right through his stem cell transplant. His kidneys improved and are functioning at approx 30% & he no longer requires dialysis. Scott gets blood work done every 4 months & is seen by his oncologists every 6 months. He is very busy "living" as are we all. I am not concentrating on paying the bills off like crazy anymore, we pay the mortgage ( I stretched it out when he was diagnosed) and we are using the money for travel and fun with our children while we can. If Scott's MM comes back I know those opportunities may be limited. Some people think we are crazy & should be preparing for the "worst", I believe the "worst" will have a harder time finding us if we are having a good time & enjoying each other now. Besides - who needs to live in dread every day when MMer's are living longer & longer. I now actually have something real to worry about & it has stopped me from fretting over all the little stuff. Scott is watching his boys play hockey & swim in the ocean - life is good. His SCT was in Aug. 08 and he has been on no medication or chemo other than a blood pressure med since. I do have him on Vit d, curcummin , resveratrol etc.
Good luck to everyone - Shannon
Hello Earl-
That's a big question. You can find info about the topic of whether to transplant or not in The Myeloma Beacon Forum or on my blog. Just type in stem cell transplant and twenty or more articles will pop-up. I just finished a long conversation with a patient from Alaska. Did you know there is no where in the state to get a SCT? Disappointing. Anyway, she is trying to decide what to do. My advice is always use the least invasive, dangerous therapy first. If that is the case, one would tend to wait until at least first relapse before attempting a SCT. But I am not a myeloma doc and shouldn't be giving you medical advice--at least not on the record! Good luck! Pat
Congratulations on beating one of those pesky statistics! My unprofessional theory is that there are likely more people surviving well beyond all the numbers, but because they are doing well--they are likely not being counted in many of the trials or studies. Stage III here--alive and well 7 years after diagnosis. It's good to get the word out about these things. Thanks.
Thank you! Glad you are doing so well, too! Pat
Hi Pat,
Greetings from Argentina and thank you for your inspiring words. I read eagerly all you posts.
My wife has been diagnosed with a Plasmacytoma that later progressed to Multiple Myeloma (or Mieloma like We say in spanish) nine years ago. She has been on Revlimid plus Dex for the past 2.5 years and doing very well. And I know from our meetings with other patients many people with 15 plus years since diagnosed.
It's great to live in the 21st century and have that many treatment options.
The average life expectancy is just a number to be used by the scientists and should be ignored by individual patients.
Keep going
So glad your wife is doing well! Thanks for your inspirational comments. Best of luck to you both! Pat
All, I just was diagosed stage 1 today..I had a feeling from reading on sites like this that was my outome. My Onc wants me to start w/25mg Revlimid with 4mg Dex as a start..Any thoughts if this is too aggressive. My BMB is 10%, IGG is 0.94 so CRABs, but pretty bad PN.
regards,
Scott
AZscott-
Do you mean 40 mg dex? That would be once a week. This is standard maintenance therapy dosing. I don't think it is too aggressive. I, too, had PN even before I started treatment. Get your numbers down and you could cut-back dosing, dropping dex or possibly stop treatment altogether. Consider holding off on a stem cell transplant if your numbers come down. Get your cells harvested--then I would wait. Good luck! Pat
From all information I have gathered, if you are young-ish, most researchers are still recommending an early transplant. And some researchers are recommending tandem transplants. (back to back transplants). It is a lot to digest but make sure to get several opinions so that you are comfortable with the path you take to fight this beast. Good Luck! Stan
You are correct, Stan! But I know many patients who are doing just fine and delaying transplants or skipping them altogether. Several opinions are a must! Great advice- Pat
Thanks Pat.
I see that you have your stem cells "on ice". I do too.
Do you know if anybody has looked into the timing of harvest and whether that effects the outcome of transplant?
In other words, if early harvest maybe later transplants are just as successful as early transplant?
May 201l be the best year yet for you! Stan
Hello, Stan-
My understanding is there is no difference between harvesting and proceeding directly to transplant or harvesting and then waiting. As far as when to transplant goes, a recent study seems to show a survival benefit to getting a transplant right away after initial induction. Jury is still out on that. My oncologist thinks the longer you wait the less effective the transplant. Not much, if any, data to support that position either. Hope this helps- Pat
Hi Pat,
What is your rationale for waiting for a SCT? I have one scheduled in early January but I would like to know your thinking on the topic.
Thanks!
Earl
Hello Earl-
Have you had your stem cells harvested yet? How long have you been on maintenance? When were you diagnosed? So many questions...
Glad to help- Pat
Just a comment on waiting for SCT. While there is question about effectiveness and delay, one thing is for sure without question, you will be older. Age and your condition is a consideration. How old you are at the time of delay should be considered and what you can anticipate your condition will be to stand SCT will be at a time you delay to.
I had Auto and Allo at age 61. I am now having Mini-Allo at age 66. This is a research protocol and Mini does not require chemo or radiation so it is much better to tolerate at my age.
All I want to offer here for consideration is that your age and condition be part of your delay analysis! Don't wait until it is too late!
Hugh
Great point, Hugh! One of the reasons I decided to go now. Good luck with your mini-allo. Hey, I thought an allo was supposed to "cure or kill you." Sounds like it did neither. But 5 good years? Or lots of host/graph?
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