General Comments

13 thoughts on “General Comments

  1. Joan Biggs

    I have had a mgus for 9years,when first diagnosed ,i had severe bruising ,weight loss and was given cyclophosfomide,nephechristine and solumedral,ALSO there was von willebrandts (aquired) which caused me to have several bleeds and severe bruising.This stablelised after chemo and the protein electrophoresis test showed 3 ,the first being 7,i have never felt 100%, but the bruising and kidney bleeds stablelised.Recently however I started experiencing weight loss,loss of appetite due to evening nausea,also extreme fatigue There has been an increase in the level to 6 and my haemotologist wants me to have bone scans.My body feels achy and I just feel unwell,the nausea is really getting to me.I know that there is something wrong..im worried this could be progression of the mgus.What do you suggest?

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  2. Joy

    Hi. I’m not sure where to post a general question here. This looks like an excellent blog with lots of good info.

    I have had dx MGUS for about seven years, though I’m sure it started 10 or so years ago. I’m 58. It’s climbing now, it was 1.2 when dx, and at last checkin had jumped four numbers to 2.2. So I have to start doing something! Supplements, and thanks for your recommendations here on those; I’m also working with an ND who is giving me lots of Standard Process supp’s to fight cancer (plus a thyroid condition).

    My questions are kind of general at this point: Has anyone here heard of or tried the Budwig protocol? Specifically the flax oil/cottage cheese mixture? I am starting to do that. I just wonder if it would be effective here.

    Also, diet: anyone find that the raw food, vegetarian way of eating is helpful? Is it really that important to give up meat, like some of the anti-cancer books say? I have a hard time without a lot of protein.

    Thanks for being here,
    Joy

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  3. Jennifer Holland

    Thank you for this blog. I was diagnosed with smoldering myeloma on May 6, 2011, so my journey is just beginning. Your blog has been an immediate source to turn to for information…and for hope. Thank you so much.

    Jenn Holland
    Erie, PA USA

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  4. lee

    thank you so much beautiful Margaret. i found you researching curcumin bioavailability for a different
    health problem which i have chosen to treat thru the kind of continuous research which you are doing. i guess you must spend as much time on PubMed as i do, but i am very happy (is it the turmeric?!) to find the other sites you mention. just found a new to me one- naturalpedia- might be good.

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  5. Ron

    I got back my first lab while on curcumin. I was taking Meriva 250mg SR one twice a day for eleven weeks.My monoclonal spike remained at 1.2 and my Kappa light chain went from 4.10 to 3.83 mg/dl. The lambda light chain went from .99 to .85 mg/dl so the K/L ratio actually jumped from 4.14 to 4.51.
    I am thinking about going to 250mg Meriva SR two caps twice a day
    Last June my monoclonal spike was 1.0 g/dl and my Kappa Light chain was 2.73mg/dl, and Lambda light chain was .71mg/dl with the K/L ratio being 3.85. So the jump from last June until the December lab was pretty large. I started the curcumin about two weeks after the December lab.
    Ron

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  6. Ronald Sanders

    I like many am always looking for the next super supplement or medication that shows promise in addressing our MGUS,Smoldering Myeloma or Multiple Myeloma. Many of the aforementioned do indeed aid us in our wellness quest. I then questioned what could enhance or inhibit our responses to these supplements/medications. The obvious answer to me, was our own bodies functioning. The big players that we can control actually start with our diet. This subject seems to have a strong yea or nay response with most people. Many have said eat what makes you happy and many have said a special type of diet makes them feel better. We live in a foodcentric world and this can make it somewhat difficult to ensue a healthy eating lifestyle. If eating what momentarily pleases me also pleases my myeloma cells then I choose to make those cells very unhappy. Quickly laying out the problem,it starts with increased insulin response,increased IGF-1, increased fat cells (especially visceral fat). When we have excess fat cells there is a decrease in the cancer fighting adiponectin,with an increase in fatty acids that serve as nourishment for our myeloma cells. Bottom line is, the beer,wheat, bellies, love handles what ever you want to name them are actually acting as an additional endocrine organ in our bodies doing nothing but negative things. I urge you to google adiponectin myeloma, body fat myeloma, IGF-1 myeloma, and read these studies. It was enough for me to justify a low carbohydrate, moderate protein,moderate fat diet,which will also aid and/or reverse metabolic syndrome,type two diabetes,and generally reduce inflammation.

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  7. Paula NZ

    I agree Ronald and came to the same conclusion..
    If you google Dr Mercola and Natahsha McBride she is a biochemist and treats ADHD children in the UK for years, wtih amazing results.
    At one point in her interview with Mercola she mentions the candida/fungi/immune/bone marrow connection…see what you think I came across this a few months ago..

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