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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Dear MM Coach- I was diagnosed with multiple myeloma (MM) in September 2014. I had an autologous stem cell transplant (ASCT) Feb 18, 2015. I went 2 years with no chemo or treatment. Then my Kappa light chain started to inch up. Got to 400 and I was put on 4mg of Ninlaro & Dexamethasone on a 1,8,15 and then off regimen. Last two year I have been on Ninlaro every other week. No Dexamethasone for the last year.
Kappa numbers have stayed steady at 35 with a ratio of about 1.3. I just stopped taking the Ninlaro to see if my numbers go up or maintain. My other concern is my kidney function. My kidney capillaries wee plugged up with the MM and I took some stone root for a couple of years to help get them to where they are at right now.
My creatinine was 6.9 when diagnosed. It has been down around 3.0 since the stem cell transplant but not much lower. I hae been taking CBD full spectrum 30MG capsules for about a month twice a day. I will continue twice a day until my next lab tests are done at the end of October.
Do you think I am on the right track or not? Any information would be appreciated.
My spouse is not against CBD but not really for it yet.
I will list the issues below that I consider to be important to your situation. I will also make some suggestions below.
1. “ I had an autologous stem cell transplant (ASCT) Feb 18, 2015. I went 2 years with no chemo or treatment.”
I’m going to assume that your ASCT went well and that you achieved at least a complete remission which is why you chose to stop all chemo after you finished your ASCT.
2. “Then my Kappa light chain started to inch up.”
My interpretation of a slowly increasing KLC is that you were slowly relapsing.
3. “Got to 400 and I was put on 4mg of Ninlaro & Dexamethasone on a 1,8,15 and then off regimen. Last two year I have been on Ninlaro every other week. No Dexamethasone for the last year.”
By itself a Kappa light chain of 400 doesn’t mean that you have to begin therapy again but that was your decision so no problem. 4 mg of Ninlaro is a low-dose maintenance therapy. Assuming you are not experiencing chemotherapy-induced peripheral neuropathy, you should be fine.
4. “Kappa numbers have stayed steady at 35 with a ratio of about 1.3. I just stopped taking the Ninlaro to see if my numbers go up or maintain.”
It seems to me that your low-dose maintenance of Ninlaro has worked well (“numbers have stayed steady”) again, assuming that you are not experiencing any side effects. As for discontinuing your low-dose ninlaro to see how your MM reacts (up/down/steady), I will discuss evidence-based non-conventional, non-toxic therapies below.
5. “My other concern is my kidney function. My kidney capillaries wee plugged up with the MM and i took some stone root for a couple of years to help get them to where they are at right now. My creatinine was 6.9 when diagnosed. It has been down around 3.0 since the stem cell transplant but not much lower.”
Kidney damage is a common symptom of MM. I have linked general info about Stone Root below. Your creatinine should be between .6 and 1.2 milligrams (mg) per deciliter (dL) A reading of 3.0 mg/dl is high. I will link an article about non-toxic therapies to further improve your kidney function below.
My answer to your question “Do you think I am on the right track or not?” is that you’ve done fine for the past five years. My experience and research tells me that before long you will:
My belief is that you should combine conventional with evidence-based non-conventional, integrative therapies to enhance the cytotoxicity of the therapies plus reduce the toxicity of the chemo regimens. The article below that cites curcumin as an integrative therapy for lenalidomide (revlimid) is an example of what I’m talking about.
I will include the MM integrative therapies guide with the email version of this reply.
Let me know if you have any questions.
Hang in there,
“Stone root is an herb. It has a strong, unpleasant smell that some people consider overwhelming. The root and rhizome (underground stem) are used to make medicine.
Stone root is used to treat urinary tract problems including bladder pain and swelling (inflammation), stones in the kidney and elsewhere in the urinary tract, and excess uric acid in the urine. It is also used to increase urine flow to relieve water retention (edema)…”
“If you’re interested in taking natural approaches to enhance your kidney health, talk with your doctor and consider consulting a qualified health professional.
Kidney cleanses vary in approach. Here’s a look at some of the most common types of kidney cleanses…
Here are several science-supported methods for caring for your kidneys and reducing your risk of kidney disease:1
“Conclusion: Curcumin exerts a cytotoxic effect additive to that of lenalidomide on H929 myeloma cells, and it also enhances the chemo-sensitizing effects of this agent.”