Multiple Myeloma an incurable disease, but I have spent the last 25 years in remission using a blend of conventional oncology and evidence-based nutrition, supplementation, and lifestyle therapies from peer-reviewed studies that your oncologist probably hasn't told you about.
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My multiple myeloma diagnosis didn’t instill wuithin me with any sort of connection with the past. When I was told that I had 3-5 years to live I didn’t feel the connection between the past and the present the way Kate Bowler, the author of the article linked below, did. Facing death caused a mix of fear, anger and denial.
I was desperately searching for therapy options like the newly FDA approved therapy, opdivo (selinexor) down the page.
I felt the connection Kate writes about, but not until years later. During my active therapy I just felt angry, scared, sorry, etc. I guess I was still working through the five stages of grief.
The challenge of a multiple myeloma diagnosis, especially advanced MM aka end-stage MM, is that every medical professional they talk to tells them that MM is incurable but very treatable. In addition to hearing the word “incurable” patients and caregivers can’t help but feel confused.
Looking back on 25 years of conventional (FDA approved ) and non-conventional therapies, what have I learned? Should MM patients have hope?
First and foremost, let me say that when a person has been diagnosed with cancer, having hope is critical to their survival. Because the majority of cancer diagnoses in the U.S. are early stage cancers, the average five-year survival rate is going to be higher.
However, if your cancer is 1) advanced or 2) incurable then it may be difficult for you to have much hope. When your oncologist tells you that your cancer, multiple myeloma, is incurable, you won’t feel much hope.
The question then, is what should oncology say to a patient with a MM diagnosis? Oncology is simply being factual when they tell newly diagnosed MMers that their cancer is incurable. Undergoing toxic chemotherapy has never cured anyone of multiple myeloma. Conventional oncology can provide longer and longer remissions with higher and higher price tags. But every MMer eventually faces multidrug resistance (MDR) and fewer and fewer therapy options.
When I faced MDR and my oncologist told me that nothing more could be done for me I simply didn’t believe Dr. Rassiga. I was relatively young and otherwise healthy so I thought there must be some therapy out there beside toxic chemotherapy. And there was. I underwent what my brother-in-law calls a quack cancer therapy. I reached complete remission in 17 months where I have remained ever since.
Some people have accused Stanislaw Burzynski, the doctor who developed the therapy that cured me, as selling false hope. What do you think?
Please watch the video below to learn more about the evidence-based, integrative therapies to combat treatment side effects and enhance your chemotherapy.
Have you been diagnosed with multiple myeloma? What stage? What symptoms? Scroll down the page, post a comment or question and I will reply to you ASAP.
“DURHAM, N.C. — I once imagined my life as an uninterrupted line from birth to decline. There would be some creditable achievements and great love sandwiched in the middle, of course, but time was a durable thing.
I stood on the precipice of each new year with my checklist of resolutions in hand. I would achieve tenure, master the Russian language and visit the world’s largest statue of Paul Bunyan and his majestic blue ox, Babe, in Bemidji, Minn. My family can testify that I come by this brand of pragmatic determinism honestly. My grandfather Gerald Bowler lived in a small town in western Canada near the intersection of Bowler Place and Bowler Avenue. According to family lore, he had stared with a determined expression at an empty field for a long time with his hands on his hips and the subdivision simply materialized.
But after I found out at age 35 that I had Stage IV cancer, time did not point toward the future anymore. It was looped: Start treatment, manage side effects, recover, start treatment. I lived in the present tense.
Even the seasons began to fade. The spring used to be about grading papers near the duck ponds at Duke, and summer was a long Canadian road trip to debate the merits of curling. Is it a sport? Isn’t it just a hobby? The fall was consumed by preparing lectures for seminary students and customizing Halloween costumes that could fit over snowsuits, and the winter began with the first inflatable reindeer terrorizing the lawn. The future had been as real to me as the present or the past.
Christian theology has rich categories for the future, about the kingdom of God turning the world on its head, but I was hearing little of these ideas. Instead, my fellow believers assured me that my interrupted life would be finished in heaven. Satisfaction guaranteed! Their version of hope for me was an act of deferral to a time and a cosmic place where God would make all things right. But the sicker I became, the more “hope” was a word that pointed to the unbearable: a husband and a baby left behind, an end without an ending.
I was confident that hope had its uses, but I began to think of it as a kind of arsenic that needed to be carefully administered. As far as I was concerned, it poisoned the sacred work of living in the present: taking my medication, asking about a friend’s terrible boyfriend and counting my son’s eyelashes as he slept in my arms. I wanted to be alive until I was not.
I tried to explain this to my friend Warren, an esteemed reverend-doctor who wears his clerical collar even on Tuesdays. I teach at a divinity school that trains pastors, so these are the conversations we have in the hallways, and I told him that I had given up on the future.
After a long pause he asked, “Would you agree that true happiness is to enjoy the present without anxious dependence on the future?”
“I’m really hoping you are going to tell me that Jesus said that,” I said. “This is a trap, isn’t it?”
“That was Lucius Seneca, the ancient philosopher of Stoicism,” he said, laughing. “Look, it takes great courage to live as if each day counts. That was a fundamental insight of Stoicism. But we Christians are a people who must live into the future.” I had no idea what he meant. The future was a cliff.
Worried I would not have a future, I tried to live without one. I sowed myself into the moment with its needles and white blood cell counts, diaper changes and grocery pickups. But even as I resolved to keep myself in the present, the future kept interrupting. I was scrambling to find my son, Zach, a larger onesie or discovering that Christmas had now become the season of “Please don’t pull that off the tree.” I finished the book I never thought I would see published, and I drove my 70-year-old father to a re-creation of Noah’s ark in Kentucky simply to amuse him. The heavens wheeled and the seasons turned as we were pulled beyond the everlasting moment.
The Stoics considered time to be cyclical, an eternal recurrence of motion from fire through the creation of elements back to fire again; the Enlightenment saw time as the arena of progress, a moral motion toward improvement and perfectibility. Much of Christian theology rests on the image of God as the ultimate reality beyond time and space, the creator of a past, present and future where all exists simultaneously in the Divine Mind. But where does that leave the bewildered believer who cannot see the future and whose lantern casts light only backward, onto the path she has already taken?
Approaching the new year, I wondered how I might renew hope for a future I can no longer see. So I rummaged around for inspiration in well-used daily planners and to-do lists, only to discover a stack of cards I had intended to mail long ago. Thank you for reintroducing me to tuna casserole. Thank you for inviting Zach to make a maze out of boxes. Yes, my dog often licks the television and thank you so much for taking him. There were photos that friends had hung by my bed of our last (surprisingly violent) round of Mennonite board games and of my misguided attempt to take my cello Christmas caroling. Someone had framed an image of Zach, grinning on my lap, my chemotherapy fluids hidden by a series of elaborate sock puppets we had created.
The terrible gift of a terrible illness is that it has in fact taught me to live in the moment. But when I look at these mementos, I realize that I am learning more than to seize the day. In losing my future, the mundane began to sparkle. The things I love — the things I should love — become clearer, brighter. This is transcendence, the past and the future experienced together in moments where I can see a flicker of eternity.
So instead of New Year’s resolutions, I drew up a list for 2019 of experiences that had already passed: a record not of self-mastery but of genuine surprise. 1. My oncology nurse became a dear friend. 2. Even in the hospital I felt the love of God. 3. Zach is under the impression that I never get tired. These are my small miracles scattered like bread crumbs, the way forward dotting the path behind me.”
End stage multiple myeloma is, by definition, when a MM patient reaches multi-drug resistance (MDR). Basically, if you’re a mm patient who has tried and failed all other FDA approved MM therapies then you MM grows until you die.
According to the study linked below, about 40% of MM patients responded to selinexor. Of those who responded, approximately 25% “signficantly knocked down” their MM.
“This trial tested selinexor with dexamethasone, a combination that significantly knocked down the cancer in more than a quarter of patients, including two patients who went into complete remission… This therapy caused at least a minimal response in almost 40 percent of patients who had multiple myeloma, a cancer of a type of white blood cell called a plasma cell.
“This study proved that a novel, first-in-class drug with a new mechanism of action can kill a patient’s cancer cells,” said the study’s senior author…”This proved that the drug worked in patients who had exhausted every other treatment and who would have been placed on hospice care otherwise.”
The clinical trial, called the STORM Part 2 Study, studied the response of 122 patients taking selinexor and dexamethasone, both oral drugs, in trials across the United States and Europe. Mount Sinai enrolled a quarter of the patients in the international study.
Patients generally saw a response to the drugs within one or two months. While there was no organ toxicity, side effects included low blood count without bleeding, nausea, vomiting, lack of appetite or fatigue.
“This study is meaningful for patients with multiple myeloma who haven’t had success on multiple other therapies…” “An increasing number of patients have resistance to the standard drugs used in the treatment of multiple myeloma, and the overall survival in these patients is short, sometimes less than three months.”
Selinexor is also being investigated in multiple myeloma in combination with other approved multiple myeloma drugs as well as in other malignancies such lymphoma and ovarian cancer…”