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Newly Diagnosed- Multiple Myeloma Cancer Coaching Program?
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.
Hi David- I am a newly diagnosed multiple myeloma patient. What is involved with the Multiple Myeloma Cancer Coaching Program? I am going to see my specialist in Boston on Oct. 6th next week.
My goals are to beat MM and get another 25 years in on this earth. I am 58 yrs old, I have 4 kids, my youngest is 12 years old and I need to be here for at least another 10 years and do not want to damage him with worry and anxiety about my condition.
3 years ago I was told I had smoldering MM and started a nutrition program with a practitioner who used muscle response testing. Things stayed rather steady for 2 1/2 years. Last March when Covid came to town I had begun a carrier change from sales based job to a Carpenter / Contractor position. Something I have done in the past and enjoyed more than the sales jobs that had worn on me for 14 years.
I had stopped going to the muscle response testing person and became less focused on my health and supplements, “covid state of mind.” I had missed an appointment ‘test’ in Dec. 2019 and they pushed out any testing in the spring. In August my test numbers came back high and my Dr. advised me to seek immediate counsel in Rochester NY and advised a SCT would be in order.
That said I trust her 100% and tend to let her take on the heavy lifting of worry and research.
I have no symptoms however my PET CT scan showed 1 leason in my sacrum region. Matt
Hi Matt-
Thank you for registering for the Multiple Myeloma Cancer Coaching Program. Below please find my write-up of your diagnostics, key issues to understand and possible therapy plans for you to consider.
The bottom line is, even though you are early stage MM, a lesion in your sacrum necessitates either local radiation or chemotherapy.
- Bone Marrow biopsy of 9/2- Early stage mm (19%) but monoclonal abnormalities
- Kappa FLC at 780- high but not too bad- increased to 847 by 9/23
- Lambda in normal range-
- LDH- 145 normal (120-246 range)
- Complete Metabolic Panel- all normal- creatinine, BUN, all normal- no kidney involvement
- B2M is high at 3.2- stage 1-
- Complete Blood Count- Red, White blood cells, hematocrit, hemo, all low- only slightly low but Mike, are you out of breath, fatigued?
- IgA is high at 2745- (range is 40-350)
- IgG is a bit low
- IgM is in range
- SPEP- m-spike of 1.4
General Issues to Discuss-
1) With a low m-spike of 1.4, no kidney damage, no bone damage, low % of plasma in your marrow, you are early stage-
2) I can make an argument for continued pre-MM diagnosis. The main issue is your genetic abnormalities.
3) Possible therapy plans-
a) standard-of-care induction, ASCT, maintenance therapy-
b) low dose therapy, supplementation
c) combination of A and B- standard induction, low dose, supplementation as needed
Let me know if you have any questions.
Thank you,
David Emerson
MM Survivor
MM Cancer Coach
Director PeopleBeatingCancer
Recommended Reading
- Multiple Myeloma Side Effects- Radiation-Induced Lumbosacral Plexopathy
- Antioxidants During Chemotherapy/Radiation?
- Multiple Myeloma Cancer Coaching Program
Treatment of Myeloma: Cure vs Control
“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…”
Genetics of multiple myeloma: another heterogeneity level?
Conclusion
“Despite the use of the most promising genomic tools (GEP, SNP array, and NGS), MM remains a very heterogeneous disease, with no unique common mutation. The NGS studies in the past 5 years have characterized the suclonality concept. Even though NGS data can be considered disappointing because they do not show common mutations that could define subentities, they are nevertheless important because they confirm the wide molecular heterogeneity of the disease and the frequent occurrence of some supposedly “driver” mutations only in subclones.
This finding is important not only for our understanding of the biology of these genes in MM, but also for the hope of targeted therapies. It is clear that improvement in our understanding has been incremental and not exponential with successive utilization of various technologies and the molecular dissection of the disease, especially in the demonstration of suclonality. The objectives of future studies will be to analyze the 100 to 200 recurrent mutations (clonal or subclonal), in homogeneously treated cohorts of patients, in order to understand their significance in the evolution of MM, but also to learn how to deal with them in order to propose the best treatment to patients.”
Multiple Myeloma Cancer Coaching Program
“Hi, my name is David Emerson, and I’ve been a Multiple Myeloma survivor since 1994. I have been in remission since 1999.
No, you did not read that wrong. I am still here 25 years later, and I spend my days helping Multiple Myeloma patients decipher both the disease and the treatment options available with a heavy focus on treatment outcomes and patient experience.
I believe that informed patients make better healthcare decisions, and that pursuing evidence-based therapies shown to make a difference in your treatment outcomes is better than looking for a miracle myeloma cure.
But I made mistakes along my own Multiple Myeloma journey.
A lot of mistakes…”