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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Treatment for end-stage myeloma is limited… and may not be what you think. Though the article linked below discusses all three type of blood cancer- leukemia, lymphoma and multiple myeloma, this post focuses exclusively on myeloma.
Let me stress that I understand the desire on the part of family and caregivers of myeloma patients to push for more therapy to buy the MM patent more time.
Having said that, as a MM survivor myself, let me say:
Pushing the patient, their oncologist, family member to try one more round of chemo can lead to an expensive, painful last few days or weeks.
End-stage myeloma refers to the advanced stage of multiple myeloma, a type of blood cancer that affects plasma cells in the bone marrow. In this stage, the disease has progressed to a point where treatment options are limited, and the focus often shifts to palliative care, which aims to relieve symptoms and improve quality of life rather than curing the disease.
Key characteristics of end-stage myeloma include:
What the article below says to me is that oncologists may be the wrong people to turn to in your pursuit of treatment options for end-stage myeloma.
Consider talking to a palliative care. Symptom management may be the best treatment option for end-stage myeloma.
David Emerson
“Blood cancer death rates have dipped in recent decades, dramatically boosting 5-year survival rates in leukemia, lymphoma, and myeloma. Still, the three diseases were expected to kill more than 57,000 people in the United States in 2023 — almost 10% of all cancer deaths.
As a result, hematologic specialists frequently have to grapple with dilemmas related to the end of life. This, of course, isn’t unusual in medicine, especially the field of oncology. But blood cancer poses unique challenges in its final stages, and research suggests that hematologic specialists are especially likely to pursue intensive treatment for patients with terminal disease.
Here are five things to understand about navigating end-of-life care in blood cancer.
In patients with solid tumors, it can often be fairly simple to determine when a patient is reaching the final stages of illness. “Once a patient has metastatic disease, it is usually not curable, with few exceptions…”
At that point, he said, the focus of treatment can transition from curative care — with the goal of getting rid of the cancer and restoring health — focusing on prolonging life, reducing symptom burden, and improving or maintaining quality of life.
But in blood cancer, the process is more complex. “There may still be a chance of cure, even with widespread disseminated disease and even in heavily pre-treated patients,” he said…
Research suggests that patients with blood cancer are more likely than those with solid tumors to undergo intensive therapy at end of life. Hui led a 2014 study that found patients with blood cancer are more likely to have chemotherapy treatment, emergency room visits, and intensive care stays during the last 30 days of life.
Research also suggests that hematologic specialists may be less comfortable with discussions about death and hospice care than are their fellow oncologists…
“We know from the literature that the more patients understand about their prognosis and the serious nature of their illness, the less likely they are to consider life-prolonging therapies,” Hui said. “It’s not easy to help them understand their illness, navigate the uncertainty, and make these emotionally laden decisions.”
Indeed, research suggests that about half of cancer patients don’t have conversations about end-of-life matters until it’s too late, said Anthony L. Back, MD…”
The best approach is to discuss patient wishes early in the treatment process, he said, even though “it feels very awkward” to confront someone with the prospect of death. It can be a good idea to discuss patient wishes whenever a new line of therapy is started, he said, “even when it’s very clear that everyone thinks the next round of treatment should be happening…”
Patients look at end of life differently, making it especially important to talk to them about what they’re feeling. Patients in their eighties may focus on their legacies and wrapping up their lives, Back said, whereas “50-year-olds will often feel like they’re being forced to walk away from responsibilities to raise their kids and provide for their families.” Young people, faced with the prospect of an early death, “may feel totally ripped off.”
In all cases, Frank prefers to be “brutally honest” with patients with poor prognoses — “I don’t think there’s a safe option that I can give you” — while urging them to get a second or third opinions if they wish. And he often adds that clinical trials may be options. “I don’t slam doors,” he said. “I gently close them.”
In some cases, the patient makes the call to close a door when Frank would prefer to continue with aggressive treatment. “I have to partner with them and pair the treatment options to what their values are,” he said. “If you’re saying you’re done, we’re done.”
“A lot of patients feel comfortable seeing you, your nurse practitioners, and your infusion nurses. The team has taken on huge importance to them, and they’re like part of the family,” Back said. “They worry if they say no to treatment, all of that will stop and they won’t come back to clinic anymore.”
In addition to worrying about losing the expertise and resources of the clinic, patients may also feel as if they’re being abandoned, he said. “They’re very aware that other patients never come back and never see the doctor.” And that’s not all: Patients may even fear that they’ll disappoint their medical team by stopping therapy.
The best strategy is to talk with the patient about what the path forward will look like, Back said. “If you say, ‘I’ll see you in a month,’ that means they haven’t lost contact. That can be tremendously reassuring.”