Thanks to new, record breaking therapy advances, most multiple myeloma patients are living somewhat normal lives. A large majority of newly diagnosed patients are able to achieve at least a partial response—many even better. Relapsed patients also have lots to be hopeful about. Again, most patients who relapse are able to find a combination therapy which helps.
But I would like us all to pause for a moment to remember the patients that aren’t doing so well – that aren’t responding to Revlimid, or Velcade—or who suffer a re-lapse after only a few short moths after undergoing a painful and risky stem cell transplant.
Patients like Rebbecca, from a suburb of Tampa, Florida. Rebbecca has already lost kidney function and is undergoing renal failure from the effects of multiple myeloma. She has very little bone involvement—and her bone marrow numbers are good. Unfortunately, since her kidneys are already damaged, Rebbecca’s doctors don’t feel she can tolerate Revlimid or Velcade. So Rebbecca is forced to endure a toxic chemotherapy treatment using Cytoxan, and will probably loose her beautiful long hair, just in time for her transplant. (Where she probably would have lost the hair anyway) Yuk!
Then there is my friend Karl, who has had adverse reactions to both Revlimid and Velcade. And what about Ardy, a delightful, thoughtful young woman who, while undergoing her initial chemotherapy prior to transplant, suffered a reaction with an anti-fungal medication she was taking and is now legally blind. Those of us who are doing well should stop and remember that all myeloma patients don’t respond successfully to therapy. That some are already sick, have chromosomal deficiencies which cause their multiple myeloma to be more aggressive, or have other pre-existing conditions which take away the hope of using optimum therapy options. We should remember the average myeloma patient is still 68 years old when they are diagnosed and—what works for someone under fifty in relatively good health—may not work for a 74 year old with high blood pressure, arthritis, peripheral neuropathy or drug allergies.
I was reminded about all of this while reading an e-mail from a reader who responded to my column last week in the Myeloma Beacon. Let me share part of what Bob had to say:
Your latest article about Watchful Waiting caused me to write this note, and I’d like to explain why. Speaking solely for myself and not the usual Myeloma patient, my waiting is akin to living the life of King Damocles. Perhaps you know the story. A man wishes the crown so badly that he uses any methods to get it. He finally succeeds, but his throne, upon which he must sit, has a sword hanging above it suspended by a single human hair. At any time the hair might break, the sword falling and impaling him. He does get his throne at last, but the anticipation of his death drives him insane…
All therapies for me have failed, doing more damage than good. So I sit in a state of suspended animation as I wait to hear what the next bone survey will bring. Almost completely disabled now, I haven’t the luxury of moving about and trying to achieve any normalcy in life. Instead, I have hour upon hour to sit and think. One can only watch so much television, or read books. For a person of high passions and activity through his life, it’s torture to be confined. But my bones have become, as one of my oncologists described, like thin shelled eggs almost desperate for the opportunity to break. My own skeleton will no longer bear my own weight. My dreams are invaded by nightmares, my digestive systems nearly destroyed by anxiety as I watch and wait.
So I am one whose life is watchful waiting; but not watching to see when my cancer will spike, but when my frame will collapse. It brings the question as to whether it will kill me, or disable me even more; perhaps to the extent of that I be placed into induced coma to live out the remainder of my life unconscious to shield me from the pain.
I made this reply off forum, because I support the positive attitude your writing exudes and I applaud it. I do not want to shatter anyone’s hopes; especially those of the uninitiated who desperately need a reassuring word and attitude…
Thank you, Bob—and well said! Patient writers like myself walk a fine line between staying positive and realizing there are still those out there who are suffering from severe bone pain, who’s kidneys have failed or who’s family is making the difficult decision to seek help and comfort in hospice care.
Bob’s blog, Deludia, is, by his own admission, a “bit dark.” But this is his reality. Bob is disappointed by the care he has received from the VA and he’s in pretty bad shape. I read his site from time to time and appreciate the point he is trying to make: Reality bites!
So feel good and keep smiling, but please take time to remember our fellow patients in pain—and patients who aren’t doing so well and may not be here next year. Pat