The Fickleness and Unpredictability of Multiple Myeloma

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BY JIM OMEL

One of the most predictable things about myeloma is its devious unpredictability.  Why do half the people who get this cancer die within 5 years, despite receiving the best treatment they can find? Why do the other 50% live longer than 5 years, some much longer? A member of my support group (Willie…..real name) had a transplant about 12 years ago and has had no therapy since then.  He has had no relapses and continues to enjoy normal labs. Why?

I have had myeloma for 19 years and have led my support group for the last 17 years. I fully expected to die many years ago, and have remained the only survivor from our original group. I attended most of their funerals.  Recently it was necessary to fill out a form briefly listing my original year of diagnosis and relapses. I wrote, “Initial dx in 1997, relapses in 2000, 2006, 2010, and ‘any day now’”.  I have no symptoms, am taking no maintenance meds, and have had normal labs.  Despite these 6 glorious drug-free years, I can truthfully say that ‘any day now’ accurately describes my fear of recurrence ever since I stopped Revlimid and Velcade in 2010. Every deep ache or lasting pain reminds me that each of my relapses came with bone erosion and unrelenting pain.  I fully anticipate that the next lab will be the one that shows an abnormal immunoglobulin electrophoresis or serum free light chain rise.  I don’t consider my myeloma return as “if”; it is considered “when”.

All of us with myeloma were shaken and terribly saddened by the sudden death of our energetic friend, Liz Smith Conley.  Lizzy sought and received the best care possible.  Why was her cancer so aggressive?  Why did Pat Killingsworth suddenly die from myeloma after educating himself and studying best treatment options?  Likewise Mike Katz, and the list could go on and on…. On the other hand, why does Ron from my group (real name) continue to be free of myeloma despite no treatment for many years, just like Willie?  Why did dear Jim (real name) suffer aggressive relapse a few months ago after about 13 years of no treatment whatsoever?

Experts tell us that myeloma is at least 7 different diseases, defined by their genomic characteristics and risk status.  I understand that, and realize patients with 17-p53 deletion have high risk myeloma.  Why then has Nancy (real name) who has that ominous chromosomal feature done so well?  Each month she greets me with a smile and a reminder that she and Jerry pray for me every night. I know she means it.  Does God hear her?  Why have I been so lucky the last 6 years and so many, many people more deserving of grace than I suffered recurrence and death?  Sometimes I feel “survivor’s guilt” that I have been blessed with ‘myeloma light’ despite my broken back and ribs.

Andrew Gordon is an excellent writer for the Myeloma Beacon.  In his October 8 essay he explained his mental quandary over stopping all drugs and probable development of secondary MGUS.  He said, “Why do I have this nagging sense of concern?” and noted that even the most optimistic among us have moments of doubt.  He reported, “It seems odd that, now that things appear to be as good as I could hope, I cannot seem to let the ap­pre­hen­sion go”.  Andrew…..me too!  Even after 6 years of CR I feel exactly the same way you do.

Cherie Rineker wrote an equally inspiring column Oct 6 for MyelomaCrowd in honor of Lizzy Smith Conley and told of the remarkable similarities between these myeloma warriors.  I read it to my wife this morning stifling the same tears Cherie describes in her final paragraph.  Everyone with myeloma can identify with Cherie’s stirring comment about “the only fear she has left” being how her daughter will cope with her death if she doesn’t make it.  Me too Cherie!  Who will push my wife’s wheelchair and dress her each morning and feed her if I die of myeloma?  This cancer is so horribly unpredictable.  When will mine become active again?  When will the shifting clonal tides of myeloma make it aggressive and deadly for me?  For Willie?  For Ron, Nancy, Jim?  When? (not if).

Life is absolutely not fair.  What is fair about a child with brain cancer?  Why must Cherie and Jenny and all of us suddenly cope with Lizzy’s young death?  What is fair about her two children abruptly losing their mother?  Life is not fair and never will be.  We must however live and enjoy each day God gives us without ever knowing what day the oil will run out in our personal lamp.  We all will die.  How can we live and enjoy the happiness that is possible each day if we let the fear of that death consume our thoughts?  I hate myeloma and its fickle unpredictability.  It is no worse however than the sudden diagnosis of inoperable stomach cancer which blind-sided my brother just three months ago, or the unrelenting progressive multiple sclerosis my wife endures every day.  Life is not fair but God doesn’t give us more than we can handle.  Myeloma remains bitterly incurable.  We are developing better answers and accurate measurement of sustained MRD.  Confirmed test accuracy of this deep response will eventually give those of us waiting for the other shoe to drop an objective measure of peace.  I will write more about MRD in an upcoming column.

Each day is a gift from God.  Enjoy them all.

Jim Omel MD

 

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About Author

Jim Omel MD is a retired family practice physician from Grand Island, Nebraska who has had myeloma since 1997. He is active in many areas of cancer patient advocacy, with a special interest and focus on multiple myeloma.

6 Comments

  1. Great post Dr Jim! You write our words and story. Wow have you had a lot on your plate too! You and your family members, and the irony of you being a physician! That’s a lot of illness in your family! I too, don’t get why some of us do ok for years, and others like Lizzy and Pat, treat so aggressively and boom, gone :(( So incredibly heart breaking. I’ve been in this awful, yet wonderful online myeloma circle of friends since my Dx 12.30.2009. I have followed so many via the Beacon, Myeloma Crowd, personal online blogs, my blog, etc. I belong to a local support group too, and am amazed how well some do, and others struggle and struggle, then gone in months or years. I’ve had the standard Rev + Dex, then prep for an auto SCT July 2010, with CR. Maintained CR with lowest dose Rev for 18 months. Within 9 months off all meds, MM came roaring back summer 2013 and I’ve been back in treatment ever since, with my IgA and M Protein gaining ground monthly. But I’m coming up on my 7 year anniversary, and count my blessings daily. And I too, continually ponder, why me, why you, why them, why anyone, why Lizzy, why Pat, etc. Oh, the betrayal of our bodies. Thanks for a great post Jim. I’m adding your link to my blog! Stay well, and wishing the best to your family members too. Julie

  2. Well said Jim! I often wonder these same things. I just lost my dad on September 14th. There have just been so many taken from us too soon. We had often related to Pat and Lizzy. All took slightly different paths with the same result… Why?

    When my dad was first diagnosed in 2012, it all seemed OK even though he had a lot of bone damage and was diagnosed with stage 3 IGG Kappa… Quickly got into remission after SCT and RVD treatment, wasn’t considered high risk, was on the low dose of Revlimid for maintenance. Myeloma let him live a couple quieter years, wondering when it would come back. Would he get a shorter remission, or lucky enough to get a longer remission? No matter what, you question everything every step of the way. Is maintenance better? Could you ever be drug free? Why can some and others can’t? Then February 2015, it reared its ugly head and came back with a vengeance. He ended up on a clinical trial of pomalidomide, ricolinostat and dex for about 3 months and had to stop because it quit working. Then was on cytoxan, kyprolis and dex until his allo transplant in June of this year with his perfect, sibling match. Too many complications in the end from the transplant, which was even hard for doctors to understand. Maybe it’s because he was heavily pretreated, maybe it’s because he had an aggressive form of Myeloma, and maybe it all just comes down to genomics.

    I don’t understand it and I don’t understand why we have lost all these amazing warriors far too soon! They fight so hard, have such a strong will to live, but just like Cancer doesn’t discriminate, neither does death. Just is that much more important that we keep searching for those answers and supporting research to help us find that cure.

  3. I just lost my husband on September 9th to this horrid disease. He fought long and hard with dignity and courage. He was 70 and was in good health up until the time he was diagnosed 4 1/2 years ago. He kept a positive attitude up until the end. We miss him terribly but know that now he is at peace and Myeloma free. Hopefully, someday they will find a cure for this horrible disease.

  4. Thank you for this post. I was diagnosed in January of 2014 and had my sct in June of that year. I was doing fine until a couple of months ago when I started coming out of remission. I, just like Cherie, focus on what my 21-year-old daughter will do when her only parent is gone. It feels like now I am beginning a descent and I hope it is not a quick one.

    Thank you again for your inspiring message.

  5. Hi Jim, I loved your article! Thank you!! Yes, This crazy disease is fickle indeed. Lately I have started talking to my friends about the reality of my life cut short. Though most won’t hear of it, I have told them they must allow me to talk about it. I have asked them to be there for my daughter when my husband may have a tough time with the emotional, or girl aspects of raising our daughter. Of course, if I am given more years, this will not be an issue, but I feel like I need to prepare not only myself, but my husband and my friends for what may ly ahead if this new drug doesn’t work. As far as my eleven year old daughter, she still believes that we have conquered MM, and there is no reason why I should have her think any different at this point.

  6. Thank you for this wonderful, insightful article. I was diagnosed in March, 2015, and have had a very good partial response to drug treatment, but none of my doctors will offer a prognosis, for the very reasons you so eloquently describe.

    Indeed, the only way to deal with this unpredictable monster is to trust G-d and to appreciate the many gifts He bestows upon us every day. It is a strategy that many of us have a hard time learning, but it is indeed the only way.

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