“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?”
Hi David- I am 71 years old and was diagnosed November 13 2020 in stage 1 with IgA multiple myeloma. I was walking through a stand of dead trees and heard a limb crack above. I snapped my head back and felt a crack in my neck. The mri showed a crack in the C2 and a small lesion. They gave me the news at the Hospital in Tupelo MS. The next day I was on my way to Moffit in Tampa FL. I live in Naples FL only a hundred miles away.
I got the kyphoplasty a couple of weeks later. My team of Doctors scheduled my treatment of RVD- lite to start January 4 2021. I became very sick by that day with my calcium level being 15.8. They admitted in the hospital that day for a week until my numbers came down before starting treatment.
Five cycles of treatment and an Autologous Stem Cell Transplant in June. Did very well through the transplant very few side effects. My m-spike started out after the transplant at .03 and began to slowly climb each week to .63. Did a bone biopsy and found seven percent still.
I started back on RVD-lite plus Darzalex. Every week for eight weeks, every other week for 12 weeks, then once a month. Sorry for the long story but I wanted you to know my story to now.
My question is can you survive very long with your bone marrow biopsy indicating monoclonal proteins of 7-10 percent?
Also, I’m very concerned about my kidneys. My oncologist has me on 800 mg of Acyclovir daily for 6 months. Even my kidney Doctor is concerned of the length of time for that high dose.
My numbers are all very good for my kidneys and my liver and my heart is very strong with clear arteries.
I registered for the Multiple Myeloma Cancer Coaching Course last week. Am slowly working my way through it.
God bless everyone with this dreaded desease and I hope everyone is able to live a long quality life. Rod
Your introduction to MM sounds similar to my own. I presented originally with a lesion in my fifth cervical vertebra. Kyphplasty had not been invented when I was first diagnosed so I underwent local radiation once the lesion was surgically removed. I developed radiation-induced xeroxtomia and dysphagia. I think kyphplasty is a better long-term therapy for neck lesions.
Moffitt is a top notch conventional MM center.
To answer your question “My question is can you survive very long with your bone marrow showing 7-10 percent?”
the answer is yes. In your case however, your kidney health may complicate your health. Or I should say your light chains may complicate your kidney and heart function which may then complicate your long-term survival.
In the article linked below titled “Treatment of Multiple Myeloma- Cure vs. Control”
Dr. Rajkumar questions the benefit of high-dose, aggressive, toxic “potentially curative”
therapies that are effective at killing MM yet also cause a great deal of damage aka short, long-term and late stage side effects to the patient.
Controlling MM with lower doses of therapy, according to Dr. Rajkumar may be a better method for balancing both quality and quality of life for MM patients.
I mention this debate because your question of living a long life with a small amount of MM (monoclonal proteins) IN your bone marrow, is what Dr. Rajkumar is getting at. MM survivors can lead normal lives with small amounts of MM in them just as well as MM patients who undergo LOTS of chemotherapy in an effort to reach complete remission.
The question specifically for you and your therapy going forward is, “what is the right balance of MM therapies that “control” your MM without causing too much damage to your kidney health?
Not all MM therapies cause damage to your kidneys. However many therapies can damage your kidneys. Your long-term focus then, is to balance MM health with kidney health.
I will include a guide about kidney health. My research and experience is that controlling MM with low-dose, less toxic therapies combined with evidence-based, non-conventional therapies, many that have shown the ability to both kill MM as well as enhance kidney function, are the best way to manage MM for the long-term.
Let me know if you have any questions.
MM Cancer Coach
“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?