Even though my blog reader D. had told me some time ago that my blog might be mentioned in the BBC radio station that had interviewed her for the programme they were doing on turmeric, I was happy about that, of course, but I hadn’t really gotten too carried away…until today, when I found and actually listened to the programme, which is available online, right here: goo.gl/Gmda8N
Dieneke’s case study is mentioned toward the end of the programme, so please be patient. It’s a very interesting programme, anyway. With a nice turmeric-based recipe or two, which never hurts!
I have to admit that I got a bit teary as I listened to Dieneke (no point in trying to protect her privacy anymore, since her name is mentioned during the programme!) and her oncologist discuss her case…Teary in a good way, of course!
And at this point I would like to thank blog reader Jan who posted a lovely comment on my April 20th post…the comment that inspired me to have a look for the programme in the first place (but I didn’t think I’d find it):
“On Sunday 28th May 2017 ( repeated on Monday 29th) I listened to a programme on BBC radio 4 FM called ‘The Food Programme ‘. It was talking about health benefits of turmeric and in particular curcumin. The contributor to Margaret’s blog called ‘D’ was interviewed about her use of curcumin and how her MM has stabilised now for five years. Her oncologist was also interviewed and the study was mentioned. It all sounded very positive about curcumin. ‘D’ also said that she had discovered curcumin on Margaret’s blog. The programme presenter called Sheila Dillon also has MM and as I recall had a SCT a few years ago.
I’ve had MM for seven years and have been following Margaret’s blog since then. Have tried numerous alternative treatments but due to extreme pain had five months of Velcade etc last year. Pain now coming back so thinking of doing curcumin. Hadn’t done it before for various reasons.
Margaret this is so exciting! Your curcumin protocol and your blog has been talked about on the BBC!
Thanks so much for all your great work. You’ve kept me going over these seven years.
And ‘ D ‘ thanks to you too for your major contribution .
Best wishes to all,
And finally, thank you, Sheila Dillon and BBC Radio 4, for this very interesting programme! 🙂
Well deserved and about time. The amount of people that found out about what protocol to follow over the years and are still alive. For one, I probably would be dead if I had not found out through your blog.
Thank you from the bottom of my heart
My best wishes to you, and thanks a lot for sharing your experience here..also thAnks to Margaret of course for keeping up this blog with so much useful information:)
Since I’ve read your case, I’ve checked Dr.Zaidi at the Barts hospital but there is not much information at the hospital website. There is only an e-mail address (its a gmsil one) mentioned in the case study. I was thinking about getting an appointment from him, do you know what’s the best way to get in touch with him?
Really appreciate your help!
All the best,
I was diagnosed with MGUS in 2012. As you well know, when a diagnosis has such dire potential, the watch and wait protocol is excruciatingly difficult. What recourse do we have other than to immerse ourselves in research, hoping to find some shred of evidence that there may be options for taking control or at least feeling in control. I was extremely fortunate. It did not take very long to stumble across your blog, with all your carefully documented and summarized research provided here for all to consider. I was a willing student and I found a wonderfully able teacher. I read ever archived blog. I read replies. I absorbed them all. I now check-in twice a month. Five years after my unwanted “incidental finding”, I am happy to report that all of my numbers are currently within normal range (with the exception of that pesky M-spike).
Margaret, I can’t possibly convey in words how grateful I am for your diligent research. Your blog was precisely what I had hoped to find. But more importantly, your strength, your humanity and your willingness to share with others is what truly saved me. You saved me from my great despair, giving me courage and resolve not to succumb to my fear. There can be no greater gift than hope, courage and love. At the end of my days, and every day in between, I will be eternally grateful and thankful for you.
Be of good health,
Great I will listen to it now. I am so so grateful that I discovered your blog. Please know how much you help people going through such a difficult time. Thank you.
This case report is so helpful and encouraging. I gave a copy to my doctor last week. People can slide the player along to 22:35 which is where the interview begins. Many thanks to Margaret and Dieneke for sharing this inspiring experience.
That is great you gave a copy to your doctor. That was exactly the purpose of the programme. To spread the word, whether it is the medical profession or individuals.
I share the feelings of Ms Kathy.What amazes me is your deep understanding of scientific research and the strain you have taken to document it for others. All across the globe many lives would have got saved including that of my wife because of your selfless and dedicated actions spreading well over a decade.My thanks and compliments.
My mum was diagnosed as having 3rd stage MM, severely anaemic and a bit of kidney damage due to the plasma cells accumulation in 2014. We did not do chemo, sct or anything conventional with the hospital except for blood transfusions. However we did try herbal and alternative treatments which has kept her stable.
Now we are trying out 8g of curcumin daily.
So far we have done 8 weeks. Her haemoglobin has not shown improvement yet. However have not checked myeloma panel as we have an unsupportive doctor(unfortunately) so probably on the next visit.
How long did D take to shown an improvement?
Thank you so much..
Hoping for the best
Good you are trying now the 8g of curcumin daily. The haemoglobin isn’t necessarily the right marker to show you the improvement. You will see the improvement through the MSpike, or Paraprotein how it is also called. In my case it stopped going up and actually went down. However over the 5 years it has been a very slow process and sometimes it remains stable, it might go up and then goes down again. After the case study came out, I actually started taking 9g daily. The reason is that it seems that the consistency of one of the 3 curcumins in the C3 formula was changed. The manufacturer doesn’t think that it made any difference, but it now seems to work again – It was going up for a time. The 8g dosis has been used as a basis since Aggarwal did trials with mice, but it seems that higher doses are tolerated according to the manufacturers.
I hope this helps
Thanks Dieneke for your reply!
It is a mystery how these markers go up and down..sometimes on the same routine it goes down and suddenly it goes up..and we keep on trying to pinpoint the causes..did we do something wrong? ..
I wouldn’t know the answer. So many things that might influence it. With the paraprotein that result often differs from lab to lab. So best is to look at the trend. hemoglobins I always look at but that is more important when they are getting very low and you need a blood transfusion. I have had many of those when I was having the chemo.
Thank you D!
All the best to you too 🙂
Hi my husband has had MM for 11 years and is now having to start chemo again
Where can we get a reliable source of curcumin please. We
Have bought turmeric but I don’t think that is strong
Doctors Best brand with C3
Yes, Vitacost is a good source, but you can find other, cheaper places online. I take the Doctors’ Best curcumin (the one-gram tablets). D. Best used the C3 Complex curcumin that has been used in the MM, MGUS, and SMM clinical trials. Sometimes Amazon has some good offers for D. Best. Shop around…that’s my advice…
How did you find out that the consistency of one of the 3 curcumins in the C3 formula was changed? These manufacturers seem to change formulations and dont inform the public.What brand of curcumin do you take (if its possible for you to tell us?)
I always take a Sabinsa brand-either Drs best and supplement with Vitacost C3. I actually open Vitacost capsules and cook with that curcumin inside in soups, stews,curries and even scrambled eggs. I otherwise take Drs Best which is a tablet.
It was so encouraging to read your story. You are an incredibly brave woman to do this because most, if not all Drs I have had dealings with are downright anti and sneering about curcumin.
And Margaret, thanks again for all that you have done in being so wonderful-sharing and researching all this info.
Thank you for the very interesting question. After my case study was written up and ready to be published my paraprotein/M-Spike started to go up and for a year I tried to figure out what caused it, but couldn’t get to the bottom of it. Then a friend of mine said, well take one more pill as maybe they changed the formula. I am taking Dr Best C3 curcumin, and the key ingredients are the three types of curcumin, hence C3. Now I happened to have an old pot (500mg which I didn’t use) and indeed one of the three curcumins had changed – there was less of it. I emailed Dr best who confirmed that the manufacturer Sabinsa changed the specification. I also emailed Sabinsa who then replied that they didn’t think it would make any difference. However I had read that up to 12 mg curcumin per day is safe, so I just increased to 9. Since then my paraprotein went down slowly, and stabilised. I don’t know what the latest results are. And of course this is not scientific as it is just me experimenting. It really needs a clinical trial to find out what we are all struggling with. Maybe Margaret knows more?
What were the alternative treatments that kept your mom stable from 2014 to 2017?
Wishing your mom a speedy recovery.
My wife has been taking 8g tabs of Dr’s best c3 curcumin well over year and the recent tests shows all her parameters are normal.However of late she has diarrhea once or twice a day.She takes one loperamide tablet and it goes away. But comes back.Of late it’s frequency is showing an increase.I have a feeling that sometimes the curcumin may have part.My question to you is whether you have any similar experience and if so how do you combat it
I have never had diarrhea because of taking the curcumin. I do know that if you take the C3 pills in 500mg pills then you get yellow. The reason is it seems that the coating is of a difference substance.
But maybe Margaret knows more.
My best wishes to you Dieneke … and Margaret thank you so much for doing this blog. I wish you both well and congratulations for the blog being on BBC!
The blog is a huge support for my mom, who’s following the 8g curcumin protocol since the beginning of 2016. It has shown progress and her Paraprotein levels went down to 21 from being 26 and 24. Her HB was stable arround 8.6.
But recently it’s going up again 26,29,32 and the most recent is 35… and her HB is 7.1. This is within 6 months. She was taking 4 tablets of Dr’s best 1000mg in the morning and 4 tablets at night until June 2017. She changed it to having all the tablets at once at night and increased to 9 tablets few weeks ago to see if it changes anything. She hasn’t started Chemo yet as she’s afraid of it from the beginning.
Dieneke, can you please explain how you take the 9 tablets of curcumin, What is it meant by you having it empty stomach? What time do you have dinner and do you have the tablets few hours after dinner?
That is good to hear that your mother’s paraprotein has been going down when she started to take the curcumin. As expected. My reasoning is that curcumin works, so it should not go up. But the problem is the bioavailability, ie the absorbtion in the body. I am still testing this out myself, but in answer to your questions, I try to take the 9 tablets a couple of hours after my meal and at least 1 hour before going to bed. It doesn’t always work like that, so I am not too bothered. Evenings I also find the best time as it is away from any medicines you might take so there is no interference. My reasoning for taking them all at once is that at least that way more stays in the body. But others do it differently and the actual protocol that Margaret followed all those years ago says 4 pills twice daily.
Now I am taking the curcumin with lukewarm water with a spoon of apple cider vinegar with the mother in it. This is to help the absorbtion. But it is probably too soon to know whether that works. I think that we desperately need a clinical trial to resolve lots of issues we are all struggling with.
I hope this helps.
Thank you very much for the reply. It’s very helpful.
I wish you all the best!
Thank you Dieneka. If any one has any other alternative,I shall be grateful for their advice.
Al the best to you.