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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You’ve been diagnosed with an incurable blood cancer called multiple myeloma (MM). Your oncologist is encouraging you to have an autologous stem cell transplant (ASCT). An ASCT is the “standard-of-care” for the treatment of MM and, according to your oncologist, it is “potentially curative.”
According to the FDA, an ASCT is “safe and effective.”
Many studies explain that MM patients are living longer. I’ve read about MM patients living for more than 20 years.
Please don’t misunderstand me. Longer life, longer OS as oncology says, is great. Certainly ever longer OS is worthy of an ASCT which is aggressive, high-dose chemotherapy. Right?
Here’s the problem. As I see it anyway. For every newly diagnosed MM patient (NDMM) who lives for 15 or 20 or more years, there are thousands of NDMM patients who experience:
And even those long-term MM survivors- MM patients who live for more than 15 years- according to the research linked and excerpted below, even these survivors live with long-term and late stage side effects.
Believe it or not, I am okay with that. As long as it is the NDMM patient who chooses to take the risk. Sadly, I’ve never met a MM survivor who told me that his/her oncologist explained to them before their ASCT, that they might live for 10, 15, even 20 years but the ASCT would increase their risk of a host of really nasty side effects, including a treatment-related secondary cancer and death.
Two real life examples of long-term MM survival. Both MM survivors had an ASCT.
James Bond, the longest living MM survivor that I know, underwent multiple transplants. Both autologous and allogeneic. Jim wrote a book about his MM experience called The Man in the Arena: Surviving Multiple Myeloma Since 1992.
I enjoyed the book very much. I recommend reading it to all newly diagnosed MM patients. Jim and his wife Kathleen take the ups and downs of long-term and late stage side effects with aplomb and grace.
I am the other long-term MM survivor. My ASCT resulted in short, long-term and late stage side effects and an end-stage diagnosis in September of 1997. An alternative therapy put me into complete remission where I remain to this day.
My point is that both Jim and I represent opposite ends of the high-dose, aggressive ASCT picture. One ASCT “worked” and one didn’t. Yet we both developed serious life altering adverse events. Neither of us were told that the therapy were were about to undergo would result in so much potential damage to our bodies.
If you are a newly diagnosed MM patient, what would you say? Would you take the risk? I really am curious. I haven’t asked him but I’ll bet that Jim Bond would do it all again if he had the choice. I, on the other hand, would not.
I would take the control side of the cure vs. control debate in multiple myeloma.
If your oncologist comes to you and offers “potentially curative” therapy, yet with real risks, what would you do?
“However, hematopoietic stem cell transplantation (HSCT) survivors are at risk of developing long-term complications, such as
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. 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).
It is most often performed for patients with certain cancers of the blood or bone marrow, such as multiple myeloma or leukemia. 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.”
Autologous Stem Cell Transplantation (ASCT) early in the treatment of the newly diagnosed myeloma patient results in a longer progression-free survival (PFS) but not longer overall survival (OS) according to the NEJM article linked and excerpted below. That much is clear. The rest of the details may not be so clear.
The most frequent question I read in online MM groups is from newly diagnosed MMers trying to decide if and when they should undergo an ASCT. Their challenge is that high dose chemotherapy followed by ASCT means lots of toxicity. The benefits of all that toxicity are not clear. The drawbacks of all that toxicity are clear.
As I see it, the main benefit of ASCT is your chance at a better response.
High-dose chemotherapy followed by ASCT does result in a greater response meaning higher
As I see it, the main drawback of ASCT is your risk of side effects.
ASCT patients face a slightly higher risk of death, and treatment-related secondary cancer. More importantly, grade 3 or 4 adverse events that were significantly more common in the transplantation group than in the RVD-alone group were
Just as important as the evidence-based risks and benefits are the human side of the equation. Are you the type of person who is willing to take risks in order to have a chance at a longer remission of living without MM? Conversely, are you the type of person who is okay riding the MM rollercoaster. Meaning how do you think you’d feel riding the ups and downs of remission, relapse, remission, relapse, etc.
Regardless of what type of person you are, the studies convey averages. There is no guarantee of anything. You remission may be months or years. I believe in the benefits of evidence-based, non-toxic therapies such as nutrition, supplementation and various lifestyle therapies. But the benefit of MM therapies outside of FDA oncology is debated.
“The length of time from either the date of diagnosis or the start of treatment for a disease, such as cancer, that patients diagnosed with the disease are still alive. In a clinical trial, measuring the overall survival is one way to see how well a new treatment works. Also called OS.”
Progression-Free Survival (PFS)-
“The length of time during and after the treatment of a disease, such as cancer, that a patient lives with the disease but it does not get worse (relapse). In a clinical trial, measuring the progression-free survival is one way to see how well a new treatment works. Also called PFS.”
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Multiple Myeloma IT Response Alphabet Soup- MRD, sCR, CR, VGPR, PR…
“High-dose chemotherapy plus autologous stem-cell transplantation has been the standard treatment for newly diagnosed multiple myeloma in adults up to 65 years of age. However, promising data on the use of combination therapy with lenalidomide, bortezomib, and dexamethasone (RVD) in this population have raised questions about the role and timing of transplantation…
Median progression-free survival was significantly longer in the group that underwent transplantation than in the group that received RVD alone (50 months vs. 36 months)…
Overall survival at 4 years did not differ significantly between the transplantation group and the RVD-alone group (81% and 82%, respectively). The rate of grade 3 or 4 neutropenia was significantly higher in the transplantation group than in the RVD-alone group (92% vs. 47%), as were the rates of grade 3 or 4 gastrointestinal disorders (28% vs. 7%) and infections (20% vs. 9%)…
In the RVD-alone group, treatment was discontinued in 32 patients (9%) because of adverse events, and two treatment-related deaths occurred. In the transplantation group, treatment was discontinued in 39 patients (11%) because of adverse events, and six treatment-related deaths occurred…
Grade 3 or 4 adverse events that were significantly more common in the transplantation group than in the RVD-alone group were
SECOND PRIMARY CANCERS:
The incidence of invasive second primary cancers was 1.1 cases per 100 patient-years in the RVD-alone group and 1.5 cases per 100 patient-years in the transplantation group…
Five cases of acute myeloid leukemia occurred: 1 in the RVD-alone group and 4 in the transplantation group…
In conclusion, we found that consolidation therapy with high-dose chemotherapy plus transplantation was associated with longer progression-free survival than RVD therapy alone. This benefit must be weighed against the increased risk of toxic effects associated with high-dose chemotherapy plus transplantation, especially since we found that later transplantation might be as effective as early transplantation in securing long-term survival.”
“This study documents frequent endocrine disorders during the first year after autologous stem-cell transplant. Despite a tendency to improve, in more than half of the cases, the complications persisted for more than 1 year. Therefore, to diagnose and correct early and late endocrine dysfunctions, endocrine screening is required during the first year in all patients undergoing autografting.”