Recently Diagnosed or Relapsed? Stop Looking For a Miracle Cure, and Use Evidence-Based Therapies To Enhance Your Treatment and Prolong Your Remission
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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End-of-Life Myeloma- Palliative Care
“Compared with those who never received palliative care, those who received palliative care in any setting fared better, with a higher likelihood of enrollment in hospice…”
When the newly diagnosed multiple myeloma (NDMM) patient is given their prognosis of 5-7 years, possible end-of-life situations are not discussed.
These patients are not told that the last year or two of the prognosis is probably filled with pain and suffering. Quality vs. Quantity of life is rarely discussed with oncologists.
Once the NDMM patient undergoes 4 or 5 rounds of chemotherapy aka remission, relapse, remission, relapse, etc. his/her remissions get shorter, adverse events (side effects) become more and more serious and his/her MM becomes increasingly resistant to all types of chemotherapy regimens.
I know this because I reached end-stage multiple myeloma myself. I had undergone
- Induction therapies
- High-dose cytoxan
- Autologous stem cell transplant
and my remissions were becoming shorter and my MM was becoming resistant to all different chemotherapies.
The months before I reached end-stage MM I underwent palliative radiation. I was experiencing a great deal of bone pain in my hip and lower back. Walking was becoming difficult. I can envision my oncologist having a conversation about me with my radiation oncologist.
“Don, I want Mr. Emerson to undergo another round of radiation to his lesions in his lower spine.
But Nate, Mr. Emerson has already had two treatments of radiation to his spine. A third could cripple him.
Don, this is palliative therapy. It will nuke David’s MM and ease his extreme bone pain. Frankly, I’m not worried about Mr. Emerson’s long-term health…”
At the time, I did not understand the difference between curative and palliative therapies for my MM. And no one tells you that you are undergoing palliative therapies- therapies that will make you feel better but will, in no way, cure you.
In the defense of my regular oncologist and my radiation oncologist (Nate and Don respectively), the local radiation did nuke my MM and it did reduce my bone pain within weeks. And yes, it crippled me eventually. But my doctors couldn’t have known that I found a non-conventional therapy that put me into complete remission a couple of years after I underwent palliative radiation therapy.
That non-conventional “quack” therapy is discussed in another series of blog posts…
My point is that once a NDMM patient’s standard-of-care therapies stop working, once a person’s MM become resistance to all conventional therapies, he/she becomes end-stage and experiences a painful next few months/years until he/she dies.
Numerous studied document the benefit of palliative care. Please read the studies below. Palliative care is not hospice care. Two different things.
If you have any questions about conventional or evidence-based non-conventional therapies or if you have questions about palliative care for the MM survivor, scroll down the page, post a question or a comment and I will reply to you ASAP.
Thank you,
David Emerson
- MM Survivor
- MM Cancer Coach
- Director PeopleBeatingCancer
Recommended Reading:
- Surviving Multiple Myeloma- Post-Cancer Fear
- A Long-term Multiple Myeloma Survivor’s Diet, Nutrition Plan-
- Multiple Myeloma Survivor- Chemotherapy, Heart Failure-
- Multiple Myeloma Chemotherapy = Accelerated Aging
Outpatient palliative care may have distinct benefits for patients with cancer
“Palliative care appeared associated with increased hospice utilization and advanced care planning among patients admitted to an inpatient oncology unit, according to study results published in JCO Oncology Practice.
Additionally, patients who received outpatient palliative care had shorter hospital length of stay and longer hospice length of stay, researchers noted…
Rationale
“Palliative care is a specialized type of medical care that focuses on improving quality of life for all patients and families facing a serious illness,” Jonathan C. Yeh, MD,researcher at Beth Israel Deaconess Medical Center and Harvard Medical School, told Healio. “It is delivered by specially trained physicians, nurses and nurse practitioners, as well as other supportive staff such as social workers, interfaith chaplains and pharmacists. However, many individuals have not heard of palliative care or may believe that it is the same as end-of-life care — but this is not true…”
Compared with those who never received palliative care, those who received palliative care in any setting fared better, with a higher likelihood of enrollment in hospice (78% vs. 44%; P < .001), having do-not-resuscitate status (87% vs. 55%; P < .001), having advanced care planning documents (53% vs. 31%; P < .001), and dying at home or in inpatient hospice care (67% vs. 40%; P < .01)…
Implications
The findings add to those of many other studies within the past 10 to 20 years that show the benefits of palliative care, Yeh told Healio…
“It is tragic that despite more than a decade of evidence and society guideline recommendations, we are still failing to provide what we know is a helpful service for patients and families...”
Booklets, Videos Fail to Increase Understanding of Noncurative Intent
“Patients Cling to Hope
“Educational videos and booklets that provided detailed information on outcomes and prognosis for patients who underwent palliative chemotherapy were no better than usual care at helping the patients understand that treatment was very unlikely to cure their cancer…
The goal of the work was to address a known problem in oncology: patients often don’t understand that there is only a very remote chance of cure with palliative chemotherapy (PC). Discussion about response rates, prognosis, the purpose of treatment, life expectancy, and other topics are often omitted from the consent process. When they are discussed, “it’s often in relatively vague terms, for example, that ‘chemotherapy might buy you some more time,’ rather than giving specific estimates or ranges of estimates,”
Resources available to support informed consent (ie, consent documents and chemotherapy educational materials) do little to fill these gaps,” the investigators write in their report. The resulting “misconceptions undermine the validity of informed consent and have been linked to burdensome end-of-life care.”…
The patients were given five regimen-specific booklets with five companion videos. The materials described infusion logistics; potential benefits and response rates; adverse effects; alternatives; prognosis; and other matters. The materials “were direct about the noncurative potential of PC,” the investigators say…”
Effectiveness of a Multimedia Educational Intervention to Improve Understanding of the Risks and Benefits of Palliative Chemotherapy in Patients With Advanced Cancer
” Does a video/booklet intervention that integrates authentic patient narratives to convey palliative chemotherapy risks and benefits improve patients’ understanding that cure is very unlikely?…
Providing a palliative chemotherapy educational video/booklet did not meaningfully improve patients’ understanding of treatment risks and benefits, suggesting that future studies would need to examine intervention modifications or an alternative delivery strategy to improve outcomes…”