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David,
I was told by my neurologist this week, that my comprehensive metabolic panels were abnormal, for example, 663 for free kappa Lt chains, range is 3.3-19.4, H very high, and i have stage 3 Neurapathy, now he believes i may have Multiple Myeloma, which is the ‘root cause’ of the Neurapathy. Thus, i have been referred to the cancer center oncologist for further testing, including a bone marrowbiopsy! omg! I dont know what questions to ask the oncologist and treatment appears to be chemo radiaton and stem cell transplants? What about nonconventional treatment, i dont know if my neurapathy body can handle chemo, chemo inflames Neurapathy?????????????? please advise? Thank you
ReplyHi Dan-
I understand that abnormal test results can cause anxiety. The challenge is that a thorough diagnosis of MM, if that’s what you have, requires a complete diagnostic work-up including a CBC, metabolic panel and a bone marrow biopsy.
It is important to remember that the FDA approved standard-of-care therapy plan of induction therapy, an ASCT and maintenance therapy, is the therapy plan that is recommended but NOT required. Meaning, your goals, diagnosis, etc. dictate your therapy plan. You are the patient, you are in charge.
Regarding questions to ask your oncologist, at this point, it is better to listen to him/her, to understand what they are recommending at this point. Once you understand what your oncologist is recommending, ask two simple questions-
1) how many MM patients have you treated in the past month? Your goal is to figure out if the onc. is a MM specialist.
2) What stage of MM am I? Like all cancers, the patient’s stage is important and directly relates to the patients therapy plan. If your onc. says that staging is not important, it means that the onc. takes a one size fits all approach to treatment.
Yes, there are many evidence-based non-conventional therapies shown to both combat MM as well as support your immune system including nutrition, supplementation and lifestyle therapies.
These therapies have not been evaluated by the FDA and therefore are not FDA approved.
A small dose of chemo, for example, can stabilitze your MM and reduce your neuropathy. Keep in mind that without knowing your diagnosis, it is premature to discuss your future.
I understand that waiting for information can be agony. My adivise is to take a deep breath and take things one step at a time. Get all of the Recommended tests done and email me again for more recommendations.
MM, if that’s what you have, is very treatable. Hang in there and keep in touch.
Good luck,
David Emerson
ReplyI have been a mm patient for 9 years. Many ups and downs in this period. Last week I had three transfusions as my haemoglobin levels had dropped to 34. After the tfs my level had gone up to 88. Naturally I felt quite good. Presently I’m on lenalide and have been for 6 months. Prior I was on revlimid for 4 or more years. A natural remedy I also take are spricot kernels about 35 a day taken in small doses throughout the day. My specialist hase just reduced my dose to 10mg. Initially taking 20mg then down to 10mg.
In your article you talk about nutrition. Can you enlighten me with more info? Also I wish to embark on fenben.
I’m losing confidence in the pharmaceutical remedy but I inderstand fenben increases efficacy of the chemo.
I thank you for your detailed review of your personal experience.
There is so little written about mm
Thank you.
Rob.
Hi Rob-
It sounds as through you have done as well as can be expected. It is expected for conventional theories to become ineffective after a time. I will email the MM CC nutrition guide to you.
Good luck,
David Emerson
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