Cool weather. Cool weather has finally arrived. It was 9 degrees Centigrade in our back yard at 7 AM this morning, and it went up only to 20 degrees this afternoon. Yippee! Ah yes, I am a cold weather person. How I ended up in one of the muggiest hottest cities (during the summer months!) in Italy is beyond me. 😉 Oh but it is such a glorious day today, sunny and cool!
Cool blog comments. I have been getting some really great blog comments as well as some good feedback (both private and public) from the MM listservs these days. Obviously, a different kind of cool from weather cool ! Please, everyone, read Wally’s comment (yesterday’s post) and either post a comment re. his comment (!) or write me a private note. Thanks! Many things occurred to me after reading it.
My blog’s purpose. When a friend pushed me to create a blog about my experience with curcumin, I had no idea where it would lead. I thought, well, why not? I have always enjoyed writing and kept a diary for decades, until I started graduate school and was too busy studying and teaching. So, initially, I saw it just as a sort of electronic diary. Then two things started happening: 1. people were actually reading my blog AND sometimes leaving comments (yahoo!), and 2. I got hooked (on blogging!) once I began spending more time looking up the craziest-sounding natural extracts, from baicalein to gossypin and guggulsterone, and realizing that their amazing anti-cancer, perhaps anti-MM, potential. I started thinking, Why are these non toxic substances not being studied in every single cancer lab??? Where are the clinical trials??? I soon discovered why. Wally’s comment explains it well. Speaking of Wally, he is one of my most stimulating posters. And he asks me tough questions (in private messages until now), such as where do you want to go with your blog? My answer so far has been, more or less, nowhere in particular. And it’s true: when I first started blogging I simply wanted to find a non toxic protocol that would keep me stable and perhaps (I hope!) benefit some others â‚¬”those reading my blog pages and my MM listserv posts. But perhaps he is right. Perhaps I should be more ambitious and aim to put a dent in the status quo. I am open to suggestions.
Clinical trials. I have a general comment on this topic. Even if the results of the curcumin-MM clinical trial, so anxiously awaited, are not what we all hope, will that change my mind about curcumin? Of course not. I will continue to take curcumin and I will take anything else that shows promise in vitro and in vivo against MM and has been tested for centuries by populations all over the world, thus demonstrating non toxicity. There has to be a scientific base for anything I take, of course. This is not to say that I don’t have any faith in clinical trials. But I must say that I often base life choices on my instinct (with a factual basis). So far, it has served me well.
Cool MM listserv discussion. This is a related topic. We are having an interesting alternative versus conventional discussion on one of the MM listservs nowadays. One list member told us that her husband’s oncologist had APPROVED his taking curcumin (he has SMM). I was amazed. This would not have happened a few years ago, I am convinced of that. So the word IS getting out. I do have a final suggestion: those who are interested in curcumin or other alternative treatments might think of bringing up this topic with their doctors, family and friends. Spread the word. Show that there is interest in alternative remedies (that work, obviously). That could be a first step. Once doctors realize that many of their patients are taking these natural substances, well, perhaps things might start changing. As I said in a previous post, we can help our doctors think outside the box. It’s not much, but it’s a start. And perhaps my story will stop being anecdotal. Some day.
Margaret, I fully endorse the suggestions you have made above, and want to add my two cents worth.
FIRST, I greatly admire and applaud what you are doing–you are taking charge of your health. Your doctor is in charge of your illness but you are, as all of us should be, in charge of our health. Being in charge of your health means studying nutrition, biology and the way the body functions deeply enough so that you know what you must do to maintain your health and ward off diseases that can arise from poor care of your body. Most docs don’t do this for you.
SECOND, you are also taking the next important step by helping your doctor to help treat your illness successfully, by studying and finding alternatives for which there is substantial evidence that they may assist your health problem. You are researching these alternatives in sufficient depth to gain confidence in their safety (first requirement) and their probable efficacy, so that you can make a decision to try these alternatives, as supplements or alternatives to the armamenterium of drugs that your doctor can offer.
THIRD, you are working with your doctor, informing her about the results of your research so she can help avoid you going off half cocked. But we all must be aware that most docs are so busy that they can’t keep up with all the voluminous literature coming out, even in their own speciality. But in the area of non FDA approved supplements they don’t even try, because they can’t prescribe them anyhow, because their insurance won’t let them. Some doctors might APPROVE what YOU decide to do, but never expect them to PRESCRIBE an alternative like curcumin. I endorse your suggestion to readers to bring up the subject of curcumin with their doctors, but warn them not to be too discouraged when they get a negative reaction. Key thing is to do your own research and be on firm ground that the stuff has a good chance of helping, plus assurance that it won’t hurt you. 99.99% of the doctors have not done the research about curcumin that Margaret has done (they are too busy) and can’t thereby give a guided opinion. But they will give an opinion nonetheless.
As you know I used to work as a business analyst. At one stage in my career I was a business planning manager for a medium-sized US pharma company. I soon learned that the best drugs to develop were those where you could get a repeat prescription from the patient. If you produced a universal panacea, you would only sell it once.
It was even worse if you couldn’t patent the drug because any company could sell it and you would have lots of competition.
But we shouldn’t be too harsh on the pharma companies. Drugs take a lot of time and money to develop and everybody wants a return on their investments – at least I do.
The bottom line is that it is unlikely that the miracle cure we seek for MM will come from pharma companies – although they might well develop products that will keep us alive and stable.
So where is a CURE going to come from? Our best hope is medical charities, government funded research, or ourselves. My money is on the latter because we have most to gain.
So, how do we take this forward? Well, why not set up our own clinical trials. Perhaps you could get some advice on this (Carmen Wheatley in Oxford might help).
We would just do what we are doing anyway – take our curcumin, or whatever – but be consistent with the dosage between blood tests and not take anything else. It would also be important to keep accurate records.
We could submit our results to you and you could publish them in your blog. If you get enough records and anything looks promising, then the professionals might take note. If they don’t, I’m sure a lot of MMers out there will be interested.
I agree with you that it’s best to try alternative remedies while you are at the MGUS or SMM stage. Apart from what I have written about pharmaceuticals above, I believe that if natural substances work at all, they are likely to be much more subtle.
If you are going to crack a nut with a pin you need plenty of time. If you haven’t got time then by all means use a sledgehammer – which is what most of the current MM drugs seem to be anyway.
This doesn’t mean you can’t crack a nut with a pin – you just need a lot more patience and persistance. However, the end result can be so much more satisfying.
Finally, I’m a cool person too – it must be something to do with the BV 🙂
Great to read your blog. My husband has metastatic melanoma and is still alive after 8 years, although struggling. I appreciate the amount of work that you have done re alternative treatments. Peter is taking 10g of curcumin in coconut milk, 5g twice a day, 3 green tea tabs, Co Q10, MGN 3, milk thistle and a few other vitamins and minerals. I am also rubbing tumeric in caster oil onto his tumours. It’s great to read all the info you have acquired because after 8 years, i am getting very tired and need to piggy back on other’s info. There is a great deal of reading for me to do here. Thanks.
My name is Wiroj from Thailand. I’m very interesting about curcumin for treating MM and I used it to treating my father (with MM stageIII) for 4 months ago (Curcumin 8 grams/day with bioperine taking with fish oil) and Chemotherapy (cyclophosphamide with prednisone).
In Genneral my father have some improved in eating and fatigue (he has no pain) but the blood count still not improved (need blood transfusion 2 time per month).and weight loss (this is very concern for me)
I have read your blog every day for more information about alternative therapy for MM (very useful and logical). Anyway I found artical (as following) about improving soluble of curcumin but I lack of knowledge of biochemical and need you to interpretation of this artical to apply for taking curcumin for enhanching theraputics MM.
Thanks you very much. and sorry for my poor English languge.
Improving the solubility and pharmacological efficacy of curcumin by heat treatment.Kurien BT, Singh A, Matsumoto H, Scofield RH.
Arthritis and Immunology Program, Oklahoma Medical Research Foundation, Oklahoma City, OK.
Lipid peroxidation has been implicated in a variety of diseases. 4-Hydroxy-2-nonenal (HNE), a major oxidation by-product, is cytotoxic, mutagenic, and genotoxic, being involved in disease pathogenesis. Naturally occurring pharmacologically active small molecules are very attractive as natural nonsteroidal anti-inflammatory agents. Interest has greatly increased recently in the pharmacotherapeutic potential of curcumin, the yellow pigment found in the rhizomes of the perennial herb Curcuma longa (turmeric). Curcumin is efficacious against colon cancer, cystic fibrosis, and a variety of other disorders. Curcumin’s full pharmacological potential is limited owing to its extremely limited water solubility. We report here that the water solubility of curcumin could be increased from 0.6 mug/ml to 7.4 mug/ml (12-fold increase) by the use of heat. Spectrophotometric (400-700 nm) and mass spectrometric profiling of the heat-extracted curcumin displays no significant heat-mediated disintegration of curcumin. Using an enzyme-linked immunosorbent assay that employed HNE modification of solid-phase antigen, we found that the heat-solubilized curcumin inhibited HNE-protein modification by 80%. Thus, inhibition of HNE modification may be a mechanism by which curcumin exerts its effect. We also report a simple assay to detect curcumin spectrophotometrically. Curcumin was solubilized in methanol and serially diluted in methanol to obtain a set of standards that were then read for optical density at 405 nm. Curcumin in the heat-solubilized samples was determined from this standard. Heat-solubilized curcumin should be considered in clinical trials involving curcumin, especially in the face of frustrating results obtained regarding curcumin-mediated correction of cystic fibrosis defects.
I hope you won’t mind me replying to Wiroj through your blog but I found out that there is evidence that the Thai spice Galangal might be helpful for MM. I think they are talking about Greater Galangal here (there are 2 types). Like Curcumin, it is a member of the Ginger family and is frequently used in fish soup in Thailand. See the links below.
Hope this helps.
Hi Wiroj, please don’t apologize, your English is just fine! What you sent to me is so exciting, thank you soooo much, that I will do a bit of research and write a post about it. But, just quickly, it would appear that heating curcumin would improve its water-solubility, thus bioavailability. Fantastic news. I am off to do research immediately! And to heat my curcumin! 😉
And Paul, of course I don’t mind. On the contrary, this is how great information is exchanged among us. In this particular case, though, I wrote a post on Languas galangal back in April. See my “Ginger” Page (right-hand of your computer screen). You will find some info there. Keep up the good work! And thanks, Margaret
I wanted to let you know that I read your posts first thing in the morning every single day. I never write comments due to lack of time, but I appreciate deeply in my heart your hard work and perseverence. You are doing a good deed for all of us. I hardly ever have any time to do research online, so you are my encyclopedia.
Regarding heating curcumin, I wanted to share with everybody that I do it with mine. I do not like the taste or smell of the coconut milk, so I heat up a little bit of organic milk and dissolve my curcumin in it. I also add to that solution fish oil from a capsule.
At work the other day, I ran out of milk, so I heated up some water and even though it took longer for the curcumin to dissolve it finally did. I also added the fish oil.
I have been taking curcumin for a couple of years now, and my numbers have never been better. Only twice during this time my IgA has gone up, but it has gone down again. Right now it is 526, only 58 points above normal.
To all the curcumin takers, please continue to do so. It works.
What you are doing with curcumin, resveritrol, etc. then writing about it is extremely valuable to us mmers our there. Thanks and keep up the good work. David
I suppose you know that you are now on Google?
So the World is starting to ‘beat a footpath to your door’!
I know you only wished to have a small blog but these
things gather momentum until you are carried along.
I hope the pressures will not be too great.
I read and re-read Wally’s message, and I completely
agree. It is well supported by Paul’s message who
wisely points out that the big pharmaceuticals
are in business for profits and too much ‘success’
will lead to ruin.That is the way the world goes round
I’m afraid. In fact,there are some rather nefarious
characters about who adopt disruptive tactics with
unkindness and insults to discredit those who
digress from the ‘orthodox paradigm’.
They attempt to suppress free discussion in
order to protect the interests of big business.
I sincerely hope they never come here, but if
they should you may wish to consider a log-in
procedure for your blog to keep them out.
With regard to funding for trials on ‘alternative’
therapies, (I use quotation marks because in my
book medicine is medicine is medicine) the way
forward is through political decisions which will
lead to Exchequer grants from the government.
I see no future in private appeals to the public.
Government grants are not implausible since the
resulting saving to public funds will be substantial.
The problem will be to get over the circular argument
which could cause deadlock:
“We cannot support research without
evidence that it will work.
We cannot say that it will work
without the evidence of research.”
Maybe the lure of political success will push
our leaders into doing something, but that’s
the way forward as I see things.
Hope this doesn’t sound like the rant of a
Grumpy Old Man. I confess I qualify.
Best wishes from your elderly friend
Blogging is, indeed, wonderful. I have different blogs for different reasons. I even have a secret blog!
I have, as I type this, been having an interesting email conversation with Dr. Aggarwal. I’ll quote it here:
Do you know whether Curcumin interferes at all with the mounting of a cell and humoral response to SOX-2 on myeloma stem cells? The study on SOX-2 was done at Rockefeller University by Madhav Dhodapkar.
Whether curcumin modulates SOX2, is not known.
I can imagine that trying to provoke or simulate immunity to SOX2 may be that “silver bullet” that we all are hopefully anticipating. Meanwhile, since so many MGUS patients are now taking curcumin, it is urgent to also find out whether it may actually downregulate
SOX2 immunity with unfortunate results in terms of MGUS to MM conversion!
Now I am trying to interest both Dr. Aggarwal, and Dr. Dhodapkar in finding out whether curcumin down-regulates the anti-SOX-2 mechanisms. Meanwhile all you MGUS patients out there, be cautious about taking large amount of curcumin until we find out whether it down-regulates the immune response to SOX-2, for it is this which seems to make the difference between MGUS and MM. For MM patients, it’s a different matter, because for them the immune response to SOX-2 has apparently never developed or has already given up.