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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Hi David- I was just diagnosed with myeloma stage 3 in Aug. and started on Revlimid, Velcade, Dexamethasone (RVd), and now Zometa. This has been since mid September.
I have this cycle and one more before I get the Bone Marrow treatment in mid to late December. I also did 14 low dose radiation treatments on my left hip for severe pain. They did help, but my long suffering lower back has not been as cooperative.
I take 10 mg Hydrocodone, 1/2 the time 5mg for the sometimes electric shock jolts and constant pain. I have developed some issues.
My feet are swelling and toes are numb, fingertips sometimes get numb, don’t sleep well, having trouble breathing, my sinuses are constantly blocked and hard to clear even with my Neti Pot. I am beginning to think the cure is worse than the disease.
My wife wants me to follow a diet based on the work of Dr. Johanna Budwig. The Oil Protein Diet cookbook. Looks promising, though I’m old school, so a tad of resistance from me.
Any encouragement or guidance would be appreciated, as we both are in our mid sixties, and things are not going as well as I had hoped. My Dr. is encouraged by my weekly blood tests, so I got that going for me. Thanks and good health. Bob
I am sorry to read of your myeloma stage 3 diagnosis and associated health challenges. I can offer possible ideas, possible non-conventional therapies but I need to know more about your MM diagnosis.
To begin with, revlimid, velcade and dexamethasone (RVD) is the standard-of-care (SOC) for all newly diagnosed MM patients like you.
The goal of beginning therapy (induction) like this is stabilize your MM. Put you into as deep a remission as possible (MRD, sCR, CR, VGPR, etc.) See below.
My guess is that you were myelom stage 3 when you were diagnosed last August. It sounds as though your bone involvement was pretty extensive. If you have an imaging study of some kind (MRI, CT, PET, etc.) I can tell you more about your situation. Please let me know.
As for your bone pain going forward:
As for numbness to your fingers and toes, it is possible that you have the first signs of chemotherapy-induced peripheral neuropathy (CIPN). This is a common side effect of velcade and possibly of revlimid as well.
While there are a few non-conventional therapies shown to help the numbness and burning that comes with CIPN, the most effective therapy is to either reduce the dose of velcade or stop it completely. You will have to talk to your oncologist about this.
Keep in mind that autologous stem cell transplantation (ASCT) is high-dose chemotherapy. Chances are any side effects that you are currently experiencing on RVD induction therapy will get worse with an ASCT.
Consider harvesting your stem cells once your finish RVD induction therapy as your MM will be at a low at this point, and wait before deciding to have an ASCT.
Research shows that there is no difference in your overall survival aka length of life, if you have an ASCT sooner or later. Heal now, more chemo later if needed.
I have given you a lot to think about. Let me know if you have any questions.
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|sCR||CR as defined below plus normal FLC ratio and absence of clonal cells in bone marrow3 by immunohistochemistry or immunofluorescence4|
|CR||Negative immunofixation on the serum and urine and disappearance of any soft tissue plasmacytomas and < 5% plasma cells in bone marrow3|
|VGPR||Serum and urine M-protein detectable by immunofixation but not on electrophoresis or > 90% reduction in serum M-protein plus urine M-protein level < 100 mg/24 h|
|PR||> 50% reduction of serum M-protein and reduction in 24 hours urinary M-protein by >90% or to < 200 mg/24 h
If the serum and urine M-protein are unmeasurable,5 a > 50% decrease in the difference between involved and uninvolved FLC levels is required in place of the M-protein criteria
If serum and urine M-protein are not measurable, and serum free light assay is also not measureable, > 50% reduction in plasma cells is required in place of M-protein, provided baseline bone marrow plasma cell percentage was > 30%
In addition to the above listed criteria, if present at baseline, a > 50% reduction in the size of soft tissue plasmacytomas is also required
|No change/Stable disease||Not meeting criteria for CR, VGPR, PR, or progressive disease|