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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“hematopoietic stem cell transplant (HSCT) survivors are at risk of developing long-term complications, such as endocrinopathies, musculoskeletal disorders, cardiopulmonary compromise and subsequent malignancies.”
Hi David. I was diagnosed with Multiple Myeloma. I have been told to have four cycles of the drugs you mentioned (RVD induction therapy). I am currently just halfway through the second cycle.
Wondering if I need to do the stem cell transplant. I am 54 only thing weird was my IgA protein numbers which are now in the normal range.
Had a few broken ribs over the summer and some pretty painful back spasms but most are getting better now. Doing the Velcade Revlimid treatment. I like reading your story so positive.
Going into Mass General for 2 weeks for an ASCT at such an early stage scares me. I think with better diet, supplements, etc. I can keep it under control.
Would I still have to take the revlimid or a thing outside of chemo?
I appreciate your time and comments!!!! Bob
Just making sure I understand your history.
Your question “Wondering if I need to do the stem cell transplant” depends on your priorities.
I need to confirm your goals.
You are young as MM goes at 54. My thinking is that your time horizon is decades. I’m confirming this because the average MM survival is 5-7 years. Your therapy plan should take that statistic into account.
You experienced bone damage at diagnosis. This is relevant because it indicates that you were at stage 2 or 3 when you were diagnosed.
You say that your IgA levels are in the normal range after four cycles, four months of induction therapy of RVD?
In order to talk about an autologous stem cell transplant, or I should say, the pros and cons of an ASCT for you, I need to look at your
Long story short, Brad, you are facing the choice discussed in the cure vs. control linked below. Research shows that an ASCT will result in a host of short, long-term and late stage side effects with a small chance of a longer PFS aka first remission.
Working to control your MM will result in few if any side effects but a shorter PFS, more in and out of remission, relapse.
Thats a simplified pro/con discussion- I can provide more info with your specific diagnostic info.
Let me know, thanks.
“Advances in transplantation techniques and supportive care strategies have resulted in a significant improvement in survival of those who have undergone treatment. 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.
“Although not often openly acknowledged, “cure vs control” is the dominant philosophical difference behind many of the strategies, trials, and debates related to the management of myeloma. Should we treat patients with myeloma with multidrug, multitransplant combinations with the goal of potentially curing a subset of patients, recognizing that the risk of adverse events and effect on quality of life will be substantial?
Or should we address myeloma as a chronic incurable condition with the goal of disease control, using the least toxic regimens, emphasizing a balance between efficacy and quality of life, and reserving more aggressive therapy for later?
To be sure, if cure were known to be possible (with a reasonable probability) in myeloma, it would undoubtedly be the preferred therapeutic goal of most patients and physicians. But this is not the case. Myeloma is generally not considered a curable disease; however, new definitions of cure have been suggested, including operational cure, which is defined as a sustained complete response (CR) for a prolonged period.1,2 Cure vs control is debated because the strategies currently being tested are not truly curative but rather are intended to maximize response rates in the hope that they will translate into an operational cure for a subset of patients…”