MM patients who undergo an autologous stem cell transplant and DO achieve a long overall survival (15 years!) develop a variety of long-term and late stage side effects including:
Hi David- What supplements did you use? I have already had an autologous stem cell transplant. I’m 31 yrs old. Any other tips? Sally
I will link the MM CC supplementation guide below. In it I spell out all supplements that are apoptotic (kill) to MM as well as what supplements I take.
As for managing your MM, 31 years of age is young as MM patients go. I was 34 at diagnosis and I was off the charts young.
Years of research into MM has taught me that the MM standard-of-care. (SOC), does not apply to people like us. The average MM patient is 69 years of age and is diagnosed at stage 2 or 3. Yes, 4-6 rounds of induction (RVD) followed by an ASCT followed by maintenance therapy (10 mg of revlimid) is fine for the average patient. Unfortunately, you are not
the average patient. Not by a long shot.
The two studies below use numbers/statistics to outline two important findings about long-term MM management.
First, that only (9%) the youngest, healthiest, lowest risk MM patients achieve an above average, 10-15 year, overall survival. Single digits, best case…
Second, those MM patients who undergo an autologous stem cell transplant and DO achieve a long overall survival (15 years!) develop a variety of long-term and late stage side effects including:
- cardiopulmonary compromise and
- subsequent malignancies…
All to say, if your goals are for more than a 15 year survival and/or if you were not the healthiest, lowest risk, stage 1 patient, you will face challenges.
The good news is that a low dose therapy approach, utilizing integrative therapies provides a different therapy plan than the SOC approach taken by conventional oncology.
To use a time-worn analogy, MM is a marathon, not a sprint. Especially when the patient is as young as you are. Your goal is to avoid MDR aka multi-drug resistance. The less chemo you have, the longer you can avoid MDR.
I’ve thrown a lot of info at you. Let me know if you have any questions.
- MM Survivor
- MM Cancer Coach
- Director PeopleBeatingCancer
“Advances in the management of multiple myeloma (MM) led to a significant prolongation of overall survival (OS), mainly of the younger patients; almost 10% of them experience more than 10-year OS…
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.
Long PFS patients were younger (median age 56 vs 68 years; p<0.001), had bigger body surface area (median: 1.85 m2 vs. 1.76 m2; p=0.013) and lower ECOG performance status (score 0-1: 71% vs 52%; p=0.014) compared to all others.
- Long PFS patients had higher hemoglobin,
- higher platelet count and
- higher creatinine clearance ;
no patient in the long PFS group presented with CrCl <45 ml/min at diagnosis).
There was no difference between the two groups regarding percentage of patients with high LDH, presence of osteolysis, type of myeloma (IgG vs IgA vs others), levels of serum and/or urine M-protein, and percentage of plasma cell infiltration in the bone marrow.
However, more patients in the long PFS group had ISS-1 or ISS-2 disease (86% vs 61%; p=0.002) and normal pattern of marrow infiltration in the MRI of the spine and pelvis (24% vs 15%; p=0.035).
Regarding chromosome abnormalities at diagnosis, no patient in the long PFS group had high-risk cytogenetics (defined as presence of del17p, t(4;14) or t(14;16) vs 32% in all other patients.
“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.
The high burden of morbidity experienced by HSCT survivors makes it critically important that there is standardized follow-up of HSCT survivors at high risk for post-HSCT complications.
The Center for International Blood and Marrow Transplant Research/European Group for Blood and Marrow Transplantation/American Society for Blood and Marrow Transplantation and the Children’s Oncology Group long-term follow-up guidelines offer such standardized care. Future steps include wider dissemination and refinement of these guidelines.
The high burden of morbidity suffered by HSCT survivors necessitates that strategies be developed for the prevention or early detection of these complications. However, many survivors are no longer under the care of transplant centers and community healthcare providers may be unfamiliar with the unique needs of HSCT survivors. Despite the differences in approach used by the organizations described above, having a set of consensus -based guidelines represents a huge first step in standardizing the long-term follow-up of HSCT survivors. The next important step is to ensure that these guidelines are disseminated and accepted by the healthcare providers, as well as by the agencies that reimburse the costs of screening tests. Adherence to these guidelines, the yield from benefit of recommendations and cost–effectiveness of standardized follow-up of the HSCT survivors will provide evidence for refinement of these guidelines.”