Margaret's Corner

LIVING WITH SMOLDERING MYELOMA

MY DISCOVERY OF CURCUMIN

with 16 comments

I soon got on my computer and began researching my options. I looked at conventional and alternative treatments. One day (January 2006), 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 8 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!

Curcumin and Myeloma Blog

The focus of my blog will be on my personal experience with multiple myeloma and curcumin. However, I will also write about other alternative treatments with which I have direct experience or that look particularly promising. When I was diagnosed with multiple myeloma in late December 2005, my Italian haematologist suggested that I do two cycles of Velcade, and then have an autologous SCT in the summer of 2006.

When, shortly thereafter, I approached him with the curcumin-myeloma studies, he was very polite, but I could tell he was sceptical. However, he agreed that postponing the Velcade treatments for eight weeks wouldn’t make much difference in my case, so I went ahead with the curcumin protocol. Some time after reading my March 2006 test results, my first curcumin results, my haematologist told me that he was sprinkling turmeric over his food. Like me, my family and friends, he was stunned by these positive results.

My discovery of the curcumin-myeloma studies and clinical trial changed the direction of my treatment. I have never had chemotherapy. There has been no need for it. Curcumin has kept my myeloma stable for more than two years, now. My quality of life is very good, even though, like all myeloma patients, my other immunoglobulins are low, which means that I try to avoid crowds during the peak flu and cold season. When I get a cold, I usually develop a cough and have to take antibiotics. In 2006 I came down with a very bad case of pneumonia that quickly turned into pleurisy. It took me a couple of months to recover completely.

But apart from that, I enjoy life here. I am married to a wonderful Italian, and we have 4 house cats. We live in a row house surrounded by green fields and hills, under Fiesole. It’s like living in the country, but it’s a five minute walk to the nearest bus stop and a short ride to the city center.

Life is good.

Written by Margaret

March 17th, 2007 at 5:43 am

Posted in

16 Responses to 'MY DISCOVERY OF CURCUMIN'

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  1. I’ve been diagnosed with smoldering myeloma. I’ve been to M.D. Anderson and went through a battery of test. This is the first time that I’ve heard of a study with curcumin. Please advise what the protocol is.

    Thanks, Karen

    Karen B

    19 Oct 10 at 11:16 am

  2. Hi Karen, Well, if you are being treated at MD Anderson, that gives you a huge advantage, since you can go talk to wonderful Prof. Bharat Aggarwal, who works there. He is THE curcumin expert. If you scroll down my Pages (on the right), you will find all the info you need: curcumin-myeloma studies, warnings/side effects, the curcumin protocol (that Prof. Aggarwal gave to me in Jan 2006) and so on.
    Let me know how things go…and keep smoldering! :-) Important thing: have your vitamin D levels tested!

    Margaret

    19 Oct 10 at 10:46 pm

  3. Buongiorno Margaret,
    ho letto con attenzione buona parte del tuo blog che ho trovato molto interessante e mi complimento con te per l’utile iniziativa.
    A mio marito, 45 anni, è stata diagnosticata la MGUS
    a marzo 2010. E’ sotto controllo da un ematologo e sta ripetendo gli esami del sangue ogni 4 mesi.
    Dagli ultimi esami di novembre risulta una lieve progressione della componente monoclonale (circa 200 mg/anno) con normalità di indici collegati all’evoluzione della malattia. Ha eseguito aspirato midollare e l’infiltrato midollare plasmacellule è minimale, l’emocromo è ok e sono assenti Zone di osteolisi nelle aree esplorate con le radiografie.
    L’ematologo dice solo di attendere, quando ci saranno i segnali della malattia si comincerà a prendere in considerazione l’utilizzo di farmaci o altro.
    Anche io ho iniziato naturalmente a cercare in internet e anch’io sono arrivata alle ricerche sulla Curcumina e all’ MD Anderson Cancer Center. Abbiamo richiesto un appuntamento per maggio quando mio marito ha in programma un viaggio di lavoro a Houston e sto attendendo risposta.
    Nel frattempo chiedo a te un consiglio: ritieni sia utile l’utilizzo della curcumina anche in MGUS? In che dosi? Quali altri prodotti che non abbiano effetti collaterali consiglieresti di provare per scongiurare l’evolvere della malattia?
    Ti ringrazio e ti auguro di continuare con ottimismo nella tua lotta. Silvia.

    Silvia

    8 Feb 11 at 4:53 am

  4. such an insightful blog. My mother (a stage 2B Breast cancer warrior– diagnosed 15 months ago), has been drinking turmeric juice for almost a year now, not reading any clinical studies until a month ago..

    it seems you have been on it since 2008.. are you also taking conventional treatment?

    Lanie

    4 May 11 at 5:15 pm

  5. Hello Margaret – I am ‘smoldering’ and have enjoyed your blog for several months. I work at NIH and wanted to let you and your readers know that there is a presentation titled “NCI Frontiers in Nutrition Online CME Series – Is Curcumin the Spice of Life? Hear the Evidence on May 17!” “We (NCI) invite clinicians and researchers to register for the first free webinar in NCI’s Frontiers in Nutrition and Cancer Prevention Series. Experts in the field of nutrition will update you on the role of curcumin, from basic science and clinical research to future directions.” I don’t know if you have followers in Washington, DC or the DC metropolitan area, but they may want to check it out (if they are a clinician or researcher). Registration is available at http://prevention.cancer.gov/webinar-registration/20110517 .
    Best,
    Cathy in Maryland

    Cathy

    11 May 11 at 2:02 pm

  6. please leave your e-mail—Marg—or phone…..important—-

    janice

    24 May 11 at 1:13 pm

  7. Hello. I would like to know more. I was diagnosed with MM in Feb 2009. Thanks for anything you can send me.

    Troy

    11 Jun 11 at 4:06 am

  8. Hello Margaret,

    My mom was diagnosed with smoldering MM 2 days ago, and I’ve been scouring the net looking for information and natural treattments. I bought turmeric today, but after reading your blog I realize I need actual Curcumin. I live in Ontario, Canada how do you recommend I get a ahold of curcumin powder? Thank you for sharing your story, I feel hopeful about this curcumin research.

    LA

    2 Jul 11 at 5:41 pm

  9. Hello My mother has been diagnosed with MM since 2005 she just need therapy this year in March 2011. My nother is 71yrs old and participated in a clinical study with a combo of two medications including chemo. Well that was a horrible experience we thought my mom was going to die.She is now horrified and will not do anything if it is not natural my question is she is currrently on supplements but she is also on a blood thinner so can she take the ccurcumin protocol while on a prescribed blood thinner?plz advise

    Leslie

    18 Aug 11 at 9:02 am

  10. HOW DO YOU USE THE CURCUMIN AND IN WHAT FORM
    I PURCHASED PILLS IN HEALTH STORE
    ALL THE BEST

    JOE

    15 Sep 11 at 4:32 pm

  11. Margaret, very interesting non medical advice-luv it.
    I have another thought for you. I have used Elderberry concentrate (no sugars of any type)for 3 years now for colds and flu virus, I take it everyday durring flu season or if I run into someone sick on the off season. When I cannot get the concentrate I use the pill form, veggie coated capsuls preferred, but either liquid or pill form is good, whatever you have access too. I am amazed at the results, I am colds’ and virus’ free for 3 years now. Thank You, Barb in Minnesota

    Barb Gilligan

    19 Sep 11 at 6:47 am

  12. Salve Margaret,
    al mio rientro a casa dopo l’incontro odierno con il Dr.Kyle a Firenze, mi sono fiondato sul tuo blog ed ho navigato un pò in giro per attingere notizie sulla Curcumina…
    Consentimi qualche domanda :
    1. dosaggio?
    2. effetti indesiderati o controindicazioni?
    3. a parte gli effetti positivi su di te, hai notizia di altri successi?
    4. il farmacista che la prepara (lo sentirò domani) ha bisogno di una ricetta medica con dosaggio oppure con i valori delle mie analisi è in grado di procedere?
    Ti ringrazio per l’attenzione e per quanto vorrai farmi sapere.
    Giuseppe – Modena -

    Giuseppe

    20 Oct 11 at 1:33 pm

  13. Hi Margaret, I started treating my dad who suffers from non small cell adenocarcinoma with Curcumin. Week one he took 3 grams with Dr Best Curcumin 1000mg with Bioperine. Then 6g the week after, 2 1000mg after meal. He takes the curcumin pills after taking flaxseed oil. After this, he noticed the palm of his hands turning yellowish, perhaps from the color of the Curcumin. Is this normal? Should I decrease his intake? Other than that there are no other side effects.

    Thank You!

    Hanji

    23 Oct 11 at 11:12 pm

  14. Hi Hanji, I’m testing those same pills now, too, so I know exactly what’s going on: there is some powdery (curcumin) residue coating the pills, so you have to wash your hands carefully after taking them. It has nothing to do with absorption…nothing weird is going on, believe me. So, no worries! Just make sure that after taking his pills, he washes his hands with very warm water, so that the residue won’t stain his hands and everything he touches. :-)

    Margaret

    23 Oct 11 at 11:17 pm

  15. Good Morning Margaret,

    My husband has MM as was diagnosed in Nov 2008. He has been through many chemo drugs and his platelets are now too low to receive any more chemo. I was thinking of starting him on curcumin. Is it still working for you?

    Sally

    24 Oct 11 at 10:52 am

  16. Hi Sally, if it weren’t still working, I’d have to stop writing this blog. :)
    I’ll write you a private note tomorrow. In the meantime, check out my Protocol (sent to me in 2006 by Prof. Aggarwal, so it’s not something I dreamed up out of the blue) and my page on side effects. Scroll down and look on the right.

    Margaret

    24 Oct 11 at 11:00 am

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