Early Palliative care is NOT end-of-life care for MMers. For the sake of this blog post, the phrase “advance care planning” or “symptom management” makes more sense.
We all think it is over when we MM patients reach end stage multiple myeloma (MM). Well, I am here to tell you that IT IS NOT OVER. I can say this because I myself was end stage. It was early palliative therapy that managed my symptoms (bone pain) so that I could undergo non-conventional therapies to reach remission.
The fact is that conventional oncology can’t cure multiple myeloma (MM) patients. Eventually, MM survivors experience symptoms such as bone pain (me), that requires symptom management aka palliative ca
The benefit of early palliative care for MM patients is well-documented.
For the sake of this blog post, the phrase advance care planning or symptom managment makes more sense. Thinking and talking about EPC is NOT giving up.
Early palliative care for multiple myeloma patients:
- is proven to reduce hospital readmissions,
- reduce intensive-care transfers and
- extends a MMers overall survival and quality of life
I was diagnosed with pre-MM in early 1994. After my second relapse, I began to experience real bone pain in my iliac crest (hips). I underwent palliative radiation therapy to quell this pain. And it worked like a charm.
The interesting part of this story is that looking back, it is clear that this radiation therapy was not intended to be curative. In fact, I’m sure that the radiation oncologist knew that giving my more radiation to my spine would cause long-term problems for me. But I was focused on the short-term problem of pain management not the long-term problem of nerve damage.
So yes, I had reached end stage myeloma but didn’t want to give up. I underwent therapy to manage my end stage symptoms.
Further, all myeloma patients and survivors must at least start talking to their caregivers about advance care planning. If you don’t begin talking about your wishes/preferences, you may very well undergo aggressive therapies that are not curative but may only ruin your quality of life. In addition, these aggressive therapies may cost tens if not hundreds of thousands of dollars.
Lastly, I need to stress that you, the MM survivor, should not wait for your oncologist to begin the conversation.
The shocking ending to this chapter of my MM experience is that the radiation as palliative therapy enabled me to find and begin a controversial cancer therapy that I began in 11/97 and achieved complete remission by 2/99.
I don’t think it is too much of a stretch to say that palliative care saved my life…
I am a MM survivor and MM cancer coach. If you need help managing cancer let me know. For more information about cancer care including palliative therapies, scroll down the page, post a question or comment and I will reply ASAP.
thank you,
David Emerson
- MM Survivor
- MM Cancer Coach
- Director PeopleBeatingCancer
Recommended Reading:
“Evidence for the benefits of early palliative care (EPC) in patients with solid tumors is strong, but EPC has received scant attention in hematologic malignancies…
The proportion of patients reporting moderate-to-severe pain decreased significantly from baseline to the final follow-up:
- worst pain decreased from 57% to 18%, whereas
- average pain fell from 24% to 2%.
The percentage of patients reporting no pain interference increased significantly from baseline:
- general activity,
- sleep, and
- mood.
Physical and emotional symptom burden also improved, with significantly fewer patients reporting depression. Most patients (86.6%) were alive and still attending the Multiple Myeloma Palliative Care Clinic at study end.
CONCLUSIONS: These findings indicate that EPC is feasible in patients with multiple myeloma. Pain and other symptoms were well controlled.
“Expanding the evidence that palliative care has measurable clinical benefits in cancer patients, a new randomized study has found that patients who receive palliative care starting soon after the cancer diagnosis have a reduced risk for death at one year compared with patients whose palliative care is delayed by three months...”
“The study reviewed 2,353 inpatient encounters that included palliative care physicians, who focus on alleviating pain, side effects, and improving quality of life for patients and their families during a serious illness. After the model was implemented at Duke in 2011, the analysis showed, there was a 23-percent decrease in the number of patients readmitted to the hospital within a week of discharge. Patient transfers to the intensive care unit also decreased by 15 percent, and patients were discharged from the hospital about eight hours sooner, on average. During the same time, hospice referrals increased by 17 percent.
The findings emphasize the value of implementing palliative medicine soon after a cancer diagnosis rather than waiting until later in the disease’s progression. The new approach allows patients earlier opportunities to discuss their care goals and quality of life, which is becoming a central issue among health policy leaders…
“Palliative-care teams offer comfort and support, relieving pain and easing stress, for patients of all ages who often are still receiving care from other doctors for their underlying disease or condition. Evidence from several studies suggests that delivery of palliative care combined with treatment for such illnesses as cancer, heart failure, a stroke, emphysema or kidney failure helps patients live longer than those who receive treatment only for the disease.
Diane Meier is director of the Center to Advance Palliative Care, a national organization based in New York that helps start and sustain palliative-care programs around the country. The Wall Street Journal recently sat down with Dr. Meier at her office in New York City to talk about her work…”
“Patients with hematologic malignancies endure immense physical and psychological symptoms because of both their illness and often intensive treatments that result in significant toxicities and adverse effects.
Compared with patients with solid tumors, those with hematologic malignancies also experience high rates of hospitalizations, intensive care unit admissions, and in-hospital deaths and low rates of referral to hospice as well as shorter hospice length of stay.
In addition, patients with hematologic malignancies harbor substantial misperceptions about treatment risks and benefits and frequently overestimate their prognosis.
Even survivors of hematologic malignancies struggle with late effects, post-treatment complications, and post-traumatic stress symptoms that can significantly diminish their quality of life.
Despite these substantial unmet needs, specialty palliative care services are infrequently consulted for the care of patients with hematologic malignancies…
Unmet Palliative Care Needs in Patients With Hematologic Malignancies
Table 1 lists the palliative care needs of patients with hematologic malignancies during key phases of their illness, including during treatment, during survivorship, and at the EOL…
In a cross-sectional study of 180 patients with hematologic malignancies who received their care at a tertiary hospital, patients experienced a mean of 8.8 symptoms.[17] The most prevalent symptoms were:
- lack of energy,
- difficulty with sleep,
- pain, and
- dry mouth,
which affected 40% to 70% of study participants.[17]…
