Life with Myeloma

I am a U.S. citizen, 45 years old, married to an Italian, and I live in Florence, Italy. In 1999, I was diagnosed with Monoclonal Gammopathy of Undetermined Significance or MGUS, for short, of the IgG k type. At that time, I did not understand what MGUS entailed, exactly, and that it was important for me to have blood tests done every 6 months. Back then, I had two teaching jobs and no time to do any research about MGUS. I promptly forgot all about it.
Until about four years later.
In 2003, another routine (so I thought) blood test showed that the amount of this abnormal protein in my blood had increased. My GP made the implications of MGUS clear to me, and sent me to a haematologist at Florence’s main hospital, Careggi, which has a well-known Haematology Center.
I started looking up MGUS on the Internet. I soon had a clear picture of what might lie ahead unless the amount of paraprotein in my blood remained stable. But it didn’t. It kept increasing. Slowly but steadily.
My MGUS finally progressed to MM, or multiple myeloma, in late 2005. I received the MM diagnosis on December 30, based on a BMB (bone marrow biopsy) taken in November. At that time, 50 % of my bone marrow was compromised. Even though I had been expecting this progression, I admit that I was shocked to see the words multiple myeloma printed out on the test result. Not one of my happiest moments.

Discovery of Curcumin

I soon got on my computer and began researching my options. I looked at conventional and alternative treatments. One day, while scrolling down the list of clinical trials on the Multiple Myeloma Research Foundation website, I noticed that there was a curcumin clinical trial taking place at the MD Anderson Cancer Research Center of the University of Texas. Curcumin? A joke, surely.
I searched the words curcumin and myeloma on Google, and came upon the studies published in Blood (February 2003 and April 2004). I read all I could about curcumin. In the end, I was convinced. I had to try it.
Clearly, because I live in Italy, participating in the curcumin myeloma clinical trial in Texas was not an option. However, my main problem was that I had no idea how much curcumin I should be taking. In the beginning, I also mistook turmeric (the spice) for curcumin (turmeric’s active ingredient). In Italian, these are very similar words, hence the confusion. Indeed, I bought a huge supply of turmeric, which, more than a year later, I am still using in my cooking!
I wrote an e-mail to the head of the MD Anderson curcumin research team, Prof. Bharat Aggarwal, attaching my test results. I didn’t really expect him to answer. But answer he did, with a very nice message, encouraging me to try curcumin, and explaining the difference between turmeric and curcumin. He included the initial eight-week curcumin protocol. I ordered curcumin, and started the protocol, after having blood tests done and consulting with my haematologist and family. After eight weeks, I redid my blood tests, and for the first time since 1999, my IgG count had gone down, from 34.5 grams per liter to 29.8 grams per liter. Success! Since then, my IgG count has gone a bit up, then a bit down, but my markers are generally stable. A recent BMB (January 2007) showed that the level of malignancy had decreased by 20 % , from 50 to 40 %. An excellent result. My haematologist told me recently that my MM is inactive: SM, or smoldering myeloma.

My story continues…

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3 Comments

  1. Hi Margaret,

    I’m another with MGUS (almost smoldering myeloma) and would like to keep it that way! I’m planning to propose a curcumin protocol to my hematologist. But I haven’t seen a protocol anywhere. I know that you take 8 G of curcumin, preferably with an oil, and 15 minutes after taking quercetin. But questions remain:

    * Do you take all 8 grams at once?
    * Is there a best time, i.e. just before bedtime?
    * Best taken with a meal, before, after?

    Anything else about the specifics that you can share?

    Thanks, Don

    p.s. I added a link to your blog from mine: minnesotadon.blogspot.com

  2. I would like to know where you bought your corcumin, margaret and also how much and how you took it each day..with oil, the pepper? thank you

  3. Hi Margaret,

    I deleted your email by mistake, so here I am. I thought you might be intrested in this re absorbtion of vitamins with Aloe Juice which I use. I am taking it now right after Curcumin then green tea. Will keep you posted. In fact, the only brand I suggest is Lilly of the Desert. See link below. I have been on it for a year know for cancer with amazing results as you know with everything else, but never knew it increases abosrtion in a scientificly backed method.
    INTERNAL BENEFITS

    Aloe researchers report that when taken internally, aloe vera coats the lining of the digestive tract allowing absorption of the aloe polysaccharide. Recent studies have shown benefits of using Aloe when taking supplements versus using water. One study showed an increase of over 204% absorption of Vitamin C & E when using Fillet gel. Another study showed an increase of 210% absorption of Vitamin C and 180% of Vitamin B12 when using Fillet juice. Whole Leaf juice resulted in 140% increase of Vitamin C and 160% increased absorption of Vitamin B12.

    Antioxidant support
    Joint and Muscle health support
    Digestive support
    Gastrointestinal Relief
    Increased Absorption
    Immune Support

    I looked up PubMEd and it is true!
    Please see www.http://www.lilyofthedesert.com/aloe_story.html

    Be well and blesings

    Louise

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