Newly Diagnosed Multiple Myeloma Patients Don’t Know What They Don’t Know- Multiple Myeloma Cancer Coaching provides actionable therapies to treat both your myeloma as well as treat your body.
I was diagnosed with a single plasmacytoma of bone (SPB) in February of 1994 and then diagnosed with full multiple myeloma (MM) less than a year later.
I was told that my blood cancer was incurable. As my story explains, I did exactly what my oncologist prescribed. That’s why I say that I wish I knew then what I know now.
From your oncologist’s perspective, if you stick only to conventional therapies, MM is incurable. Conventional oncological treatments do not cure multiple myeloma but they will cause short, long-term and late stage side effects.
The “standard-of-care” for all newly diagnosed myeloma patients is aggressive “potentially curative” therapies. Yet no one has ever cured their myeloma with conventional therapies.
Experience, research and working with myeloma survivors since my complete remission in 1999 has taught me that managing multiple myeloma is about two things:
- treating your myeloma
- treating your body
Only by walking the fine line between the damage done by myeloma and the damage done by chemotherapy and radiation can you achieve both length of life and quality of life.
According to the first study linked and excerpted below, about 9% of newly diagnosed multiple myeloma patients (NDMM) achieve a long progression-free survival (PFS). Unfortunately, these patients are
- young as MM patients go
- early stage MM (stage 1)
- low risk (no genetic abnormalities)
If you are not young, not early stage and not low-risk then, according to the research below, your average first remission will be about 2-3 years and your OS will be about the average of 5-7 years.
To make matters worse, according to the second study linked and excerpted below, if you do achieve a long progression-free survival (PFS) and a long overall survival (OS) you stand a good chance of living with short, long-term and late stage side effects. Specifically:
- endocrinopathies,
- musculoskeletal disorders,
- cardiopulmonary compromise and
- subsequent malignancies.
According to the study, you will live in debilitating pain for the rest of your life.
My point in telling you all this is not to be gruesome and depressing.
My point is to explain what is called the “standard-of-care” for NDMM patients. Basically, the SOC for average MM patients is much too much chemotherapy, way too much toxicity in my experience.
Yet, board-certified oncologists, as intelligent and well-trained as they are, must prescribe what the Food and Drug Administration has approved as the SOC. This is how the FDA chooses to standardize MM treatment. This is how medicine works in the United States.
Chemotherapy may be necessary to stabilize your MM. But you may not need as much chemotherapy as the SOC prescribes- induction chemo regimen (RVD), an autologous stem cell transplant (ASCT) and maintenance therapy.
- Consider a therapy vacation once you have stabilize your MM.
- Consider evidence-based, non-toxic therapies to help you heal while managing your MM.
- Learn about both conventional chemo regimens, kidney, bone, nerve and brain health.
- Learn what to do when you become relapsed/refractory.
- Learn why treatment must be very different for the elderly MM patient.
- Learn about complimentary, integrative, and nutritional MM therapies.
To learn more about “a better way” please click the banner above this blog post or email be. I will reply to you ASAP.
Thanks very much,
David Emerson
- MM Survivor
- MM Cancer Coach
- Director PeopleBeatingCancer
____________________________________________________________________
Recommended Reading:
______________________________________________________________________
“Between January 1994 and December 2010, 406 consecutive newly diagnosed MM patients received first line therapy in the Department of Clinical Therapeutics (Athens, Greece).
All patients had symptomatic disease, based on the IMWG criteria of that period (at least one CRAB symptom to start anti-myeloma therapy). Thirty-six (8.8%; 23M/13F) patients achieved a PFS of at least 7 years (long PFS group) after frontline treatment.
The median PFS of these 36 patients is 10 years, while the other patients had a median PFS of 22 months…
In conclusion, our study in an unselected group of patients, the majority of whom did not participate in clinical trials, showed that 9% of patients with newly diagnosed myeloma experience prolonged PFS of more than 7 years (median: 10 years) even in the era of CC or first-generation novel agents.
These patients have:
- low risk disease,
- mainly of ISS-1 or -2,
- no high-risk cytogenetics,
- no or mild renal impairment,
- and achieve deep responses after ASCT
“However, hematopoietic stem cell transplantation (HSCT) survivors are at risk of developing long-term complications, such as
- endocrinopathies,
- musculoskeletal disorders,
- cardiopulmonary compromise and
- subsequent malignancies.
These complications have a direct impact on the morbidity and mortality experienced by HSCT survivors. Two-thirds of HSCT survivors develop at least one chronic health condition; while a fifth develop severe or life-threatening conditions. HSCT patients who have survived for at least 5 years post-transplantation are at a fourfold to ninefold increased risk of late mortality for as long as 30 years from HSCT, producing an estimated 30% lower life expectancy compared with the general population…
“Hematopoietic stem-cell transplantation (HSCT) is the transplantation of multipotent hematopoietic stem cells, usually derived from bone marrow, peripheral blood, or umbilical cord blood.[1][2][3] It may be autologous (the patient’s own stem cells are used), allogeneic(the stem cells come from a donor) or syngeneic (from an identical twin).[1][2]
It is most often performed for patients with certain cancers of the blood or bone marrow, such as multiple myeloma or leukemia.[2] In these cases, the recipient’s immune system is usually destroyed with radiation or chemotherapy before the transplantation. Infection and graft-versus-host disease are major complications of allogeneic HSCT.[2]”
