This is the title of a case report concerning a blog reader with whom I’ve been corresponding for years now. Her case report has been the main object of our most recent exchanges, as you can imagine. We couldn’t wait for it to be published.
Well, this morning I received a note from her, telling me it had finally been…published! And so I sat down and wrote this post…I’m so amazingly excited for her…
Here’s the link to the FULL case report: goo.gl/YCMR0A
As you can see, it’s very easy to read…
An excerpt from the Discussion: “The fact that our patient, who had advanced stage disease and was effectively salvaged while exclusively on curcumin, suggests a potential antimyeloma effect of curcumin. She continues to take daily curcumin and remains in a very satisfactory condition with good quality of life. This case provides further evidence of the potential benefit for curcumin in myeloma. We would recommend further evaluation of curcumin in myeloma patients in the context of a clinical trial.”
I couldn’t agree more!
P.S. in a recent comment, blog reader Charlotte brought the case report to my attention (thank you!). But I had just lost my mother, and, to be honest, I barely glanced at the abstract…I didn’t make the connection…until this morning, of course…
This is great news – thank you for sharing it with us! There are so many curcumin options to choose from…is it possible to find out what kind of curcumin she takes?
Indeed, a wonderful case report. Typically HBOT is seen used in conjunction with other interventions, such as intravenous ascorbate, a ketogenic diet, etc. Do you know what additional changes she may have made to her lifestyle? Also, what is the rational for a single large dose of curcumin, given the short half life would one not see better results with mutilple smaller doses throughout the day?
Hello Benjamin
I really didn’t make any other changes to my diet. I am not good a that.
Re rationale for taking it all at once, the bioavailability and the fact that the absorption is very bad, so my reasoning is that if I take it all at once, hopefully less stays in the system. And it works for me so really don’t want to change it.
D.
Hello Margaret, thank you for posting my case study. Long awaited and i am so pleased that at last it was published. Not easy because registrars are busy so it was thanks to eric lowe from myeloma uk who offered the help of his medical writer. My consultant was brilliant, and overall it was a great team to get it done.
Now of course this would never have been possible without Margaret who put me onto curcumin in the first place. and at times has given me advice. Her story and inspiration is massively impressive and I hope that Margaret’s case is written up and published.
With regards to the questions – it is also in the report – i have been following the protocol of Dr Best C3 curcumin with bioperine – 8 grammes a day at night on an empty stomach. This was the initial protocol.
Anyway do ask me any other questions.
Best
D.
Hi D.
I was so pleased to read the report – how wonderful!
I am also wondering about the hyperbaric oxygen chamber. How did you arrive at doing such a treatment?
Does your doctor have any opinions on whether it has helped re the myeloma? The research paper only mentioned it once, so it isn’t clear….
Thanks!!!
Hello Michelle
I started with the hyperbaric oxygen because after the last failed attempt to harvest stem cells my neutrophils were very low. I thought that the oxygen would boost the neutrophils. My consultant contacted Whipps Cross hospital where they offer hyperbaric oxygen. Unfortunately they didn’t accept me as for myeloma no clinical trial has been done . Informally the director of the centre at Whipps cross directed my to MS Centres who offer oxygen treatment.
It was mentioned in the report as I started that at the same time. But I don’t think it directly contributes, although probably it has been strengthening my bones – but again I don’t know that. I go on a weekly basis. Normally it is very expensive but at the MS Centre I now pay £15 per session. A session is 15 minutes to dive down (ie get to pressure), one hour with oxygen masks when you breath pure oxygen and 15 minutes to dive up.
I initially heard about oxyfgen therapy from someone in the states.
In 2008 I was diagnosed with MM. I had over 150 lesions on my arms, legs, and head. I was definitely a case of Swiss Cheese. I did my research and found MIRT (Myeloma Institute for Research and Treatment) at the University of Arkansas. After 3months of treatment including a SCT I returned to my home in North Carolina. I found Margaret’s blog and decided at that time that I would take Curcumin-based on her research. I started taking LifeExtensions Super Bio-Curcumin (2x400mg twice a day). That was 9 years ago.
I did have 3 years of Maintence with Velcade. I was told that due to the severity of my case it would probably return fairly soon after the SCT. Well, today, I am STILL Cancer free. I believe that Curcumin is the reason that I have not had a relaspe. And if it weren’t for Margaret great blog, I might not be here today to w\rite. this. Now at 75 yrs, I am healthy, active and happily retired. Thanks for my life Margaret.
Are you still taking velcade and did you change your diet? I am newly diagnosed any info you can share will be great.
Hi Michael,
Are you still taking velcade or any other treatment with the curcumin and did you change your diet?
Hi,
My wife is SMM patient for the last two years. After a six month chemo with dex and lenalidomide ,she is now on a maintenance doze of 10 mg of lenalidomide per day.From April 2016 ,inspired by Margerret ‘s experience ,she has been taking Drs best C3 Curcumin 8 g per day split into 4 dozes.I have also been taking advice from Dr Aggarwal as well who had been a great help.Now she is on complete remission even though my oncologist does not fully support our resorting to curcumin.All her symptoms of mm have disappeared though the side effects of her maintenance doze linger.Thanks to curcumin and its proponents, Margerret and Dr Aggarwal.
Hi Prabha,
This is Praveen from Chennai,India.
I am mgus for 3 years’.now my haemoglobin is slowly dropping.just want to know if you are from India which brand to buy and dosage.
Thank you
Parveen.
Hello Parveen
I forgot to reply to this question, but I take Dr best C3 Curcumin. This has three types of curcumin. The manufacturer of this is Sabinsa. They are an Indian Company but have branches also in the US. They seem to support a lot of research I found out and sent me an amazing book with studies for a wide range of illnesses including 3 on myeloma. I only found out about them after the study was published but I have been in touch with them.
Best
D
Hi D,
In the study it is mentioned Hbas9.7.
Did it also improve with circuit.
Thank you so much for sharing this.
It is helping so many of us.
Praveen.
Hello Parveen
Yes over the period that the study covers (until Jan 2016) my hemoglobin improved from 9.7 to 12.3. Other markers have been going up as well.
Best
D
Hi D.
So glad to read of your recovery. It’s very heartening to read. Thanks for sharing. Did you commence with 8 – 1000 mg capsules or did you first start with smaller dosage. My husband is currently refractory and resistant to current regime. We are seeking viable options that could be helpful immediately.
Please explain the oxygen treatment referred to in the case study.
Thanks again for sharing.
Hello Anne
I actually started with less per day and built it up slowly over a month. I followed the protocol that Margaret outlined in her blog a while ago now.
Make sure that you buy the 1000mg tablets and not the 500mg. The coating on the 500 mg tablets are different, and another patient who took those got yellow because of the coating.
Hope that helps.
I did not start with a smaller dose. I had no side effects taking 800mgs twice a day.
Hi D.
Thanks for the clarification on the curcumin supplement. I’m also interested in knowing if you changed your diet in any way, such as going vegetarian or vegan, or did you just eat a normal diet?
Thank you!
Hello Camille
No I didn’t really change anything in my diet. I generally eat pretty healthy but sometimes do like my wine, or sweets etc
Best
D
Hi D
Glad to hear the curcumin is working so well for you and that your condition has been stable for several years. I have a couple of questions
Did you have Cytogenetic analysis done early on and if so what did it show (i.e. Trisomies, del 17, etc)
How many hours before taking the curcumin do you typically stop eating?
Are you taking any other supplements like quercetin and if so which ones?
Thanks in advance
Richard
Hello Richard
Yes as part of the study they did a cytogenetic test which showed no abnormalities.
With regards to when I stop eating before taking the curcumin, ideally a couple of hours, but I never always manage that particularly when I go out for a meal.
I don’t take any other specific supplements, but do take Oxygen therapy which probably more helps my bones. I also go to a health club for the spa, sauna and steam room and have acupuncture. But I don’t think that they particularly contribute to the result.
Best
D
Hi D.
Thanks for your reply. Did you have any cytogenetics done at the Beginning of your treatment and if so what did they show?
Richard
Hello Richard
Maggie Lai, who wrote up the case study suggested the cytogenetic testing, so this was done but of course retrospectively. The result of the testing is included in the report. It wasn’t done in 2011. In those days that wasn’t really the practice and it still isn’t here in the UK.
Best
Dieneke
Great to come across this information. Thank you! I’ve been adding organic tumeric powder to just about everything I cook (using freshly ground organic pepper, too), and I make a tumeric/pepperscorn/coconut milk broth every night. I consume about 2 tablespoons of tumeric each day, but am not taking tumeric supplements. Am I helping things this way? Not doing enough? Opinions appreciated. Thanks!
Hello Bonney
As far as I understand it is the curcumin that is the substance that is the most effective. If you just take turmeric you don’t get that much curcumin. A lot of research has been done with the Dr best C3 Curcumin which has 3 ingredients of curcumin. That is the one I have been taking.
The main problem has been the bioavailability, or the fact that the curcumin absorbs too fast and thus not much is left to make an impact. The Dr best C3 has bioperine included, ie pepper that helps this process.
Hope this helps
Best
D.
Hi Praveen
Yes. I am from Kerala.
I have tried two different brands of curcumin before settling for Dr best c3 Curcumin with piperazine. My wife takes 8 get per day split into 4.times.She takes 1g tablet and takes it afterfood. To reach this ?evel she has gradually increased her consumption over a month.
Thanks
Prabha
Hi Prabha,
Thank you for reply.
I am from Chennai.
Actually,am an ophthalmologist.
How are you buying the curcumin tablets.
Can you further elaborate please.
Praveen.
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,
Jan.
Hello Jan
I am glad you heard the food programme about turmeric. It is great and I am so pleased that I could mention Margaret’s Corner. That is how I found out. They have also listed Margaret’s website link on the page here http://www.bbc.co.uk/programmes/b08rpd85 – Now if you missed the broadcast, don’t worry as it is available on demand.
D
I listened to the programme and am grateful for the info. I found Margaret’s corner a few years ago. It has been a constant comfort and my ‘go to’ place for info … so good for you for mentioning it.
Wishing you all the very best.
A pleasure Dee and well deserved for Margaret.
Best
Dieneke
Hi Praveen
I get it from US. It is available in Amazon as well.
Both my wife and me are retired.
Regards
Prabha
Thanks D. I’ve been an avid radio 4 listener for many years and enjoy the food programme. Was delighted to hear your episode. I like to store programmes on BBC iPlayer or podcasts for easy access.
Re. curcumin do you think an empty stomach is crucial? I tend to eat dinner fairly late so not sure if my stomach is empty even at bedtime. The prospect of taking eight grams immediately before bed concerns me regarding digestion. My digestive system was knocked for six with the treatment last year and still can be fragile despite Kefir and prebiotics.
Regards,
Jan
Hello Jan
I think that whether to take it through the day or all it once seems to be an individual matter. Everyone seems to react differently. As it works for me, I just continued. At night is best for me as it least clashes. I try not to take it too late and not to go to bed immediately afterwards. As Margaret suggested years ago, the protocol actually recommends to build the amount up slowly, so first week 2 then second week 4, etc etc. That is how I did it when I started with the right dose.
best
Dieneke
Hi Margaret!
I found your blog and it really gives hope and information to us who suffer from chronic disease. I have tried to read everything you and your blog reader have written, commented about curcumin. I found that many of your blogg readers acknowledge that they started taking curcumin for several years ago. It would be interesting that they could tell us how has been doing their curcumin medication. How many have been able to stay stable during the disease phase, etc. It should inform more about the positive effect of curcumin.
Thank you for spending so much time and keeping us informed.
Hi D
I also heard your case discussed on the BBC Radio 4 Food Programme.
I’m a little confused about the dosage of curcumin. You mention, that you take 8 grams per day of Dr Bests C3 Curcumin complex. As far as I can see these come in 120 1000mg tablets with a recommended dose of 1 tablet a day. Does that mean that you take 8 tablets per day? If so, I assume your oncologist has approved taking such a high dose.
Any advice on dosage would be very gratefully received.
Kind regards
Ken
Hello Ken,
Yes indeed during the case study period I took 8 grammes. That is much higher than the recommended dosis, as this is needed for us myeloma sufferers. As you might have heard on the Food programme my hematologist was kept informed of what I was taking and did not interfere in my decision. Actually what was very good is that when it looked like it was working he was very keen on having it written up, what happened in the end and you can read the case study which is in the Food Programme link. Now I hope that the fact that this now is reaching a wider audience it will persuade other hematologists to accept this as well. Given that the problem is that no clinical trial has been done as yet, so officially the medical profession cannot touch it officially.
Best
Dieneke
Many thanks D.
I startled on two on Sunday so I’ll see how it goes as I build up.
Best wishes,
Jan
Hi D I wonder if you’re still reading this.
I have now been on 8 grams Drs Best curcumin since late June. Feeling pretty well within myself. Walking one to three miles most days even in our ghastly Scottish weather.
Yesterday’s blood tests show low haemoglobin, low neutrophils, and increasing serum free light chains. Consultant wants to start Revlamid. Next week I have radiotherapy for wedge fractures in my back.
Can you remember roughly how long it took before you started to see beneficial results from the curcumin?
Many thanks,
Jan.
Hello Jan
In my case the results were pretty immediate. This was in the form of my M Spike instantly improving. There were times that it would remain the same or go up a bit.
However this is different for each person. The main problem is the bioavailability. The curcumin doesn’t absorb well in the body so might not all get there. That’s why more research is needed.
Also of course, the curcumin doesn’t cure you but stabilises you. It keeps your M Spike in check. So it could well be the case that when it is increasing without the curcumin it would have increased faster. Again more research is needed. My myeloma is IGG and I was Stage 4 when diagnosed back in 2008. For the study they checked my cytogenetics and I don’t seem to have any deletions.
Best
Dieneke
Hi D,
Thank you for letting us know.
I am Igg.My haemoglobin is slowly dropping.but my mspike is stable.
Should I be concerned for my haemoglobin,or should feel it is stable.
How long Will it take for haemoglobin to rise?
Thanks
Parveen.
Hello Parveen
I wouldn’t be concerned as the main marker – at least for me – is the MSpike. The haemoglobin can go up or down again. I don’t know what that is influenced by so time it takes to rise, who knows. But don’t worry.
Best
Dieneke
Many thanks D. Mine is IGG Kappa however as you say availability is key and we are all different. Last week my paraprotein was 28 having been 25 the month before. It was 7 when I stopped Velcade in October. Oh well they’re now talking about starting Revlamid soon. I must research having curcumin with it.
Best wishes,
Jan.
Jan
Mine is IGG Lambda..paraprotein is 6 but the free light chain is elevated..I have just started Rev. I am going to use the curcumin after I have done 3 months of Rev…
I will note what Rev does, and when I stop it I will just continue with the Curcumin.
Thanks Paula,
I’ll be interested to know how you get on. My understanding is that the Revlamid continues as a maintenance once desirable results are achieved. Again maybe it’s different for everyone. Have seen something which talks about taking it with curcumin but can remember where as I’ve looked at so much.
Best wishes
Jan
Previous message should say “can’t remember “. Oh the joys of predictive messaging.
Jan
Hi Jan Just had results. Rev. did nothing…FLT double what it was in 20014.
Starting tomorrow on another drug Melphan of which I had a choice between that and Carfilzomib and I will be taking the curcumin with it, and 2g Vit C
If the Melphan does not work I will go straight onto Carfilzomib…I did have a heart attack in Feb so that has to be taken into consideration with meds…
Sorry Jan forgot to say I have Amyloidoisis not Myeloma..which is why the heart involvmment is mentioned.