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Just got a diagnosis of MGUS this week. I’ve been called a hypocondriac, weird, and all kinds of names because for 6 months now I’ve had some bizarre symptoms. No one has addressed except my PCP, just this week. He’s been working on it , due to my symptoms. 75LB weight loss, this is within the last 6 months. I’ve had 2 leg bloodclots , bone pain. When I tried to explain my foot pain I think the doctor thought I was really a quack. WHEN he put them all together he guessed what I had is MGUS. Going to see a doctor who specializes in blood cancer. Is it normal I’m not afraid? I think I’ll do what he tells me and hope for the best.
ReplyHi Leona-
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David Emerson
Reply[…] MGUS-“Comparatively Lower Life Expectancy?” […]
Reply[…] MGUS-“Comparatively Lower Life Expectancy?” […]
Reply[…] MGUS-“Comparatively Lower Life Expectancy?” […]
Reply[…] MGUS-“Comparatively Lower Life Expectancy?” […]
ReplyI am pretty sure I have MM I recently was changed from MS with neuropathy to Chronic CIPD. Treatment is not working. it has been 6 painful years and still not doing any better. IVIG just stopped due to complications. I am pretty sure that the Diag is incorrect and I am awaiting the transfer of records to UCLA to finalize for second opinion. I can tell you I am in enormous amounts of pain.
I just hope this gets figuered out soon.
Hi Mistie-
I am sorry to read of your health challenges. You are correct to want/need another diagnosis. There are many MM specialists in LA that you can
talk to. Hang in there and good luck,
David Emerson
Reply[…] Diagnosis, Prognosis- Risk of Progression to Multiple Myeloma, “Comparatively Lower Life-Expectancy” […]
Reply[…] Diagnosis, Prognosis- Risk of Progression to Multiple Myeloma, “Comparatively Lower Life-Expectancy” […]
ReplyMy sister was just diagnosed with mgus. She starts chemo 6/25. You are a survivor. I’m interested in all your knowledge
ReplyHi Debby-
I am sorry to learn of your sister’s mgus diagnosis. MGUS is a form of pre-myeloma. like colon polyps, DCIS, barrett’s esophgus this is a diagnosis that causes concern but it is not cancer. Most MGUS patients live with this stage for years, many not knowing they have it. I don’t want to contradict her oncologist but I don’t believe she should begin chemotherapy. Not even low-dose. I do not want to cause concern with you both but my experience is that she must think long-term-20-30 years long-term not 10 years.
I am happy to communicate further on this issue. It is up to you.
Thanks,
David Emerson
ReplyHi Karen,
While slowly creeping up pre-MM can cause anxiety keep in mind that there are both MGUS and SMMers who have lived with pre-MM for years, even decades. There are a host of non-toxic therapies supported by research that cite the ability to reduce the risk of full-blown MM.
David Emerson
Reply[…] Diagnosis, Prognosis- Multiple Myeloma, “Comparatively Lower Life-Expectancy” […]
Reply[…] Diagnosis, Prognosis- Risk of Progression to Multiple Myeloma, “Comparatively Lower Life-Expectancy” […]
Replyhi. i was diagnosed with MGUS at age 35. I am a caucasian female. my m spike at diagnosis was .3 I was diagnised incidentally by a hematologist that i saw for fatigue. four yrs later it is .5. I am IgG lambda. no other issues. FLC ratio normal. i live my life in fear of this and it is really taking a toll on me. i tried curcumin but it killed my stomach. any additional dietary advice? i know i am low risk by definition but i want to do everything i can to halt progression. even though it has only snuck up from .3 to .5, it still worries me because i am so young (and i hopefully have many years ahead) but those are also years where the paraprotein can continue to grow.
ReplyHi Joann-
I am sorry to read of your MGUS diagnosis. You are smart to think long-term I know if several MGUS survivors who have lived with pre-MM for years. Several things. First, yes, there are evidence-based, non-toxic therapies such as curcumin proven to reduce the risk of pre-MM becoming full blown MM.
Regarding curcumin. Consider taking a brand of curcumin that is both highly bioavailable as well as contains ginger to calm your digestion. I will link below. Further, consider starting with one capsule (400mg) a day for some time to give your body time to get used to it.
Regarding evidence-based therapies to reduce your risk of pre-MM becoming full blown MM, please consider the pre-MM cancer coaching guides. The guides are inexpensive and all are complete with research linked to therapies.
Let me know if you have any questions.
Thanks
David Emerson
ReplyHi i was diagnosed 3 yrs ago with mgus. I am now a 48 male . In good health , eat clean and do a lot of exercise. I have my nx appointment in November. Can you explain to me what are the numbers i should ask for as all i keep getting of my doc is . Paraprotein isnow 38 .. it dont mean anything to me !! Thanks mick (uk)
ReplyHi Mick-
UK/European units of measurement is different from the US. I think you mean that your paraprotein, commonly referred to as an “m-spike” is 3.8 or maybe even .38. The definition of MM is an m-spike over 3.0. When you meet with your oncologist the first issue is to determine if you have gone from MGUS to full blown MM.
If you have graduated to MM, you are in a very early stage. This is good as this is a prognostic indicator of longer overall survival.
So to answer your question above, ask your onc. if you are still MGUS or now MM? Your therapy plan will vary depending. Lastly, I am both a long term MM survivor and MM cancer coach. Either MGUS or MM, if you would like to learn more about evidence based Non-toxic MM therapies let me know.
thanks and good luck,
David Emerson
ReplyHello David. My name is Charmaine, newly diagnosed with MGUS this July 24, 2017 with an M-spike of 0.7 g/dL, the IgG type, free kappa Lt chains 21.9 mg/L, and free lambda Lt chains 35.1 mg/L. I am 59 years old. I suffer bone pain and have had peripheral neuropathy in my feet since January 2014. My doctor suggested “watch and wait” but I am beginning to order the top supplements as suggested (Omega 3, Selenium, Vit E, Chlorella, Vit D, COQ10, Tumeric Curcumen, B Complex, and Reserveratol). I am overweight for my height of 5’9″ (260 lbs) so have a new commitment to get out there and exercise by walking every day and a new zeal for an organic diet and no processed meats. Need your input for details in bone therapy, mind-body therapy and detox therapy? Also what is your input on my labs at this point.
ReplyHi Charmaine-
I am sorry to learn of your MGUS diagnosis. Though your numbers are all quite low. For example an m-spike of less than one is practically normal.
As for your symptoms, While MGUS is considered to be asymptomatic, it is common for MGUS patients to experience PN, bone pain, etc. Your goal will be to return to normal status through lifestyle therapies such as frequent, moderate exercise (walking is great), supplementation (be sure to use the most bioavailable formulas), nutrition, etc.
As for evidence-based bone health, mind-body and detox therapies, the 6 guides included in the pre-MM Cancer Coaching program are based on my research, are inexpensive and comes with a money-back guarantee. I will send you a link (to your email address) to the free webinar to learn more.
Let me know if you have any other questions.
Hang in there,
David Emerson
ReplyHi, I’m so glad I found this site. An M spike was found in my blood last September, but my VA doctor overlooked it until Dec. I was sent to Hem/Oncology in January. He said he’d see me back in a year. I requested that he check my blood again at the 6 month point and he agreed. I was recently called by my Primary care physician and told that my liver enzymes are now abnormal. I’ve waited for a week for my oncologist to call, but haven’t heard from him. So frustrating! Anyway, If I show you my labs, could you suggest ways I can “treat” my MGUS? I’m eating clean, I take supplements including D2 10,000 IU, B12, Fish Oil, CoQ10 and others for specific ailments. I am unable to take the curcumin or Sacred Frankincense because of gallstones. I know this is long, please forgive me. I’m very confused and scared.
FREE KAPPA 32.4 High mg/L 3.3-19.4
*FREE KAPPA/LAMBDA 1.06 0.26-1.65
*FREE LAMBDA 30.5 High mg/L 5.7-26.3
BETA 2 MICROGLOBULIN 0.18 mg/L ><=2.51 blood
Monoclonal band in the gamma region. Immunofixation confirms an IgG-kappa paraprotein. The monoclonal spike is approximately 0.3 g/dL.
PROTEIN,TOTAL 7.3 g/dL 6.0-8.6 Details
Hi Gaela-
It sounds as though you are doing almost everything you can to reduce the risk of your MGUS becoming frank MM. Your m-spike is low, your protein is with in range, your free light chains are a bit out of range but not bad so you look pretty good. My guess is that this is why your oncologist is not calling you. There are a couple of other therapies discussed in the pre-myeloma cancer coaching program but you look like you are fine.
David Emerson
ReplyI was recently diagnosed with MGUS, the IGA variety. I don’t know how long I have had it. Because I haven’t had a doctor until just over a year ago. The first time I saw my doctor for a physical was a year ago this last January and my Total Protein was 8.4. This past January it was still elevated and I was sent to a Hematologist / Oncologist that determined I had MGUS. He said my IGA is @ 0.9g/dl. I have been taking Curcumin, Turmeric, Resveratrol, Green Tea, Beta Carotene and Grape Seed Compound for probably ten years. Is this hereditary? Any suggestions? My doctor tells me I shouldn’t concern myself!
ReplyHi Philip-
Your m-spike is small at .9 and if you are supplementing then my guess is that your diet is also pretty clean and you also may exercise or keep active. All good. While I can’t completely agree with your oncologist to not concern yourself at all, I will say that you are pretty low risk.
Yes, there are a few other evidence-based therapies shown to reduce your risk of advancing to multiple myeloma even more but as long as you are not experiencing any symptoms (bone pain, nerve pain, kidney damage) I would say that you are fine.
How old are you? Any other health issues?
David Emerson
Reply[…] Diagnosis, Prognosis- Risk of Progression to Multiple Myeloma, “Comparatively Lower Life-Expectancy” […]
Reply[…] Diagnosis, Prognosis- Risk of Progression to Multiple Myeloma, “Comparatively Lower Life-Expectancy” […]
Reply[…] Diagnosis, Prognosis- Multiple Myeloma, “Comparatively Lower Life-Expectancy” […]
Reply[…] Diagnosis, Prognosis- Risk of Progression to Multiple Myeloma, “Comparatively Lower Life-Expectancy” […]
Reply[…] Diagnosis, Prognosis- Risk of Progression to Multiple Myeloma, “Comparatively Lower Life-Expectancy” […]
Reply[…] Diagnosis, Prognosis- Multiple Myeloma, “Comparatively Lower Life-Expectancy” […]
Reply[…] Diagnosis, Prognosis- Multiple Myeloma, “Comparatively Lower Life-Expectancy” […]
Reply[…] Diagnosis, Prognosis- Multiple Myeloma, “Comparatively Lower Life-Expectancy” […]
Reply[…] Diagnosis, Prognosis- Multiple Myeloma, “Comparatively Lower Life-Expectancy” […]
Reply[…] Diagnosis, Prognosis- Multiple Myeloma, “Comparatively Lower Life-Expectancy” […]
Reply[…] Diagnosis, Prognosis- Multiple Myeloma, “Comparatively Lower Life-Expectancy” […]
Reply[…] Diagnosis, Prognosis- Multiple Myeloma, “Comparatively Lower Life-Expectancy” […]
Reply[…] Diagnosis, Prognosis- “Comparatively Lower Life-Expectancy” […]
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