[docmikeParticipant]

BMJ Case Reports 2017 doi:10.1136/bcr2106-218148 by A Zaidi Maggie Lai(myeloma uk ) J Cavanagh
Long term stabilisation of myeloma with curcumin
In brief , this describes the spectacular effect of curcumin in a patient with advanced disease who had run out of convential therapeutic regimes , not least because she had neutropenia and was unable to produce stem cells .She commenced 8gm of curcumin ( seems a very big dose??) with bioperine to aid absorption and hence bioavailabilty and went into a remission which has so far lasted 5 years . I think this patient has been mentioned before on this forum but the publication of the story in a medical journal with some degree of peer review is significant .YES it is anecedotal but it together with previous studies on the anti myeloma effects of curcumin mentioned in the references of this report suggests to me that it should be evaluated in clinical trials .
Meanwhile of course what to do personally ??? and most of you reading this .!!!
(In the above report the patient also had hyperbaric oxygen weekly so this is confounding issue .I will have to research the evidence on that to see if it could be really significant ?? )
Perhaps I should mention as a retired consultant you would expect me to be sceptical about alternative medicine but I realise that have been some “natural” agents that pass the scientific tests ,( with associated good quality control of course) and have shown to be of real therapeutic benefit.But like other drugs have side effects ( eg curcumin increase effects of heparin ).
Lots to discuss here.
Mike

• This topic was modified 7 years, 6 months ago by  docmike.

[janwParticipant]

Hello Mike

Did you get the chance to listen to Radio 4’s Food programme today on Tumeric (Curcumin is an extract of the spice Tumeric), which was presented by Sheila Dillon, a myeloma patient and covered turmeric’s culinary use, history and the latest radical findings about turmeric, together with details of a myeloma patient who has taken Curcumin following an unsuccessful response to various chemo treatments. (I presume this was the lady detailed in the BMJ case study which you have detailed above.) The programme also outlines the findings from the recent BBC2 programme, Trust me I’m a Doctor on Tumeric, which reports that Tumeric might be worthy of further study as a substance with can help inhibit cancer development. If you go online to listen to the Radion 4 Food programme, you can access links to the BMJ case study and Margaret.healthblogs.org, a MGUS patient whom for many years has detailed her personal experience with myeloma and Curcumin together with a wealth of research, case studies and articles on Curcumin.

Regards
Jan

[docmikeParticipant]

Hi Jan,
Thank you for the tip and indeed I have listened to the radio 4 programme (b08rpd85)a few minutes ago .Again I think it confirms that we are that point where the evidence for the potential use of curcumin in myeloma cannot be ignored or indeed supressed .There clearly needs to be both well conducted trials in specific phases of myeloma and as the heamatologist said ,ad hoc use outside trials is not be discouraged and is indeed very tempting; not least in the relapsed situation (in which Nice has rationed therapy to dual therapy whereas in the US triple therapy has become standard with demonstrable better outcomes). In both instances the first need is to establish a reliable source, dosage and optimum bioavailability conditions . I would be very surprised if it will help every patieint with myeloma as that seems to be generally the case for all anti myeloma treatments at present . Lots more to discuss and discover .
Best wishes Mike

• This reply was modified 7 years, 5 months ago by  docmike.
• This reply was modified 7 years, 5 months ago by  docmike.
• This reply was modified 7 years, 5 months ago by  docmike.

[superwomanParticipant]

Steriod treatment and dosage

Hi just wanted to ask has anyone been told that it’s been found in recent study that the four day treatment of steriods we take with treatment ie  four days Dex on four day off then four days on etc is not necessarily? I have been put on only once a week steriods with my lenalidomide as apparently any more than 40 mg doesn’t  aid recovery only gives us more side effects, l must say  it was music to my ears as l suffer very bad with side effect from the steriods so l am very happy and l trust my consultant, was just really interested in seeing if this is happening to anyone else.

[docmikeParticipant]

Hi Jan,
Thank you for the tip and indeed I have listened to the radio 4 programme (b08rpd85)a few minutes ago .Again I think it confirms that we are that point where the evidence for the potential use of curcumin in myeloma cannot be ignored or indeed supressed .There clearly needs to be both well conducted trials in specific phases of myeloma and as the heamatologist said ,ad hoc use outside trials is not be discouraged and is indeed very tempting; not least in the relapsed situation (in which Nice has rationed therapy to dual therapy whereas in the US triple therapy has become standard with demonstrable better outcomes). In both instances the first need is to establish a reliable source, dosage and optimum bioavailability conditions . I would be very surprised if it will help every patieint with myeloma as that seems to be generally the case for all anti myeloma treatments at present . Lots more to discuss and discover .
Best wishes Mike

[annkhowardParticipant]

Hi Mike – I thought you might like to know that after 8 cycles  Velcade/dex in 2015, followed by 7 1/2 months break from treatment, then CDT I was not feeling too good, so the ‘T’ was dropped and a I had a couple of cycles of just the C&D.  It was at this point I heard the Food Programme and mentioned it to my consultant.  We agreed that a daily curcumin supplement could do no harm, since when that’s what I’ve been taking.  It’s only a couple of months, I know, but so far Free Light chains and Creatinine levels are falling, unlike the immediate rises that happened at the end of my Velcade treatment.  I’ll keep you posted!

I’m not a very good on-line communicator, but I thought it important that any people who are having any kind of success, however minor, make the effort to report it so we can push for some proper trials.  It seems that this could be one of the safest trials that could be attempted, since as far as I can tell there are zero side effects.

Best wishes

Ann Howard

[peterlParticipant]

Hello all,

I’ve had mixed messages regarding the use of curcumin in conjunction with conventional MM treatments – specifically CDT – where it can lessen the effects of the cyclophosphamide.  In some cases I also understand that if the patient has a low platelet count, or is on some kind of blood thinning medication then it may not be appropriate to take any curcumin, since this may worsen the situation.  But as always, it’s best to speak to the medical practitioner for advice.

Over the past several months I have been in touch with the lady patient that is the subject of the BBC programme and the open access BMJ journal.  There is absolutely no doubt that the large dose (now 9g/day) has worked for her, and obviously this is in the absence of any anti-MM drugs, so needs to be considered in isolation.  In speaking to her, I think the use of hyperbaric oxygen therapy can be ruled out, since the use of the curcumin is the sole reason for her excellent response (although apparently, this benefit did not occur quickly – it took some months for progress to become established).

In view of this time period, and the relatively short curcumin clinical trial that took place, with relatively few (30 – 40 participants); this seems a little inadequate to ‘test’ the proper benefits of high dose curcumin/day (1g/day I would suggest, is pretty useless?).  A broad, wide ranging trial is really necessary, incorporating many more patients (hundreds), split into sub-groups, and catering for:  with and without anti-MM drugs, PP MM, SFLC MM and the various ‘growth stages’ of the disease.  All very easy to say.  But to set up these Phase III trials, and to get the drug companies to play their part (finance), is a completely different story.  Why should they bother?  Their returns would probably be miniscule, and I suggest, detract from their better selling ‘big-ticket’ lines.   Curcumin is cheap.  My wife has a source in the U.S. and buys 5 months worth at a time (she doesn’t have MM, or other nasties, but takes it for other reasons – with full consent of our GP).

Regards to all,

Peter

 

[claicarterParticipant]

I put my hubby on Curcumin capsules (with an extra ingredient built in to aid absortion) the minute he was diagnosed with Myeloma before the doctors got him on anything else. His para protein levels have been coming down ever since. However, he’s also had radiotherapy  (only reduced PP level from 31 to 29.7) and today we got some great news that after just one round of VDT his PP level is now down to 11!  I’m sure it’s the velcade, dex and thalidomide doing most the work but a part of me believes that the curcumin is also playing a part.  Every little helps!  C

[sabsParticipant]

Hi,

I’m contemplating on putting my other on Curcumin suppliments, but not sure he will take it, its a mission as is based on the amount of drugs he is already on. His levels started at 38, after the first cycle it went down to 10, second cycle 6, we get the third cycle results on Wednesday and hopefully by the end of next week someone will tell us what the 4th cycle results are. They stopped counting his light chain levels after the first cycle (started at 290 then went down to 11) as they said they were now at normal levels.

But i would like to hear more about Curcumin and if people really do think it helps – I actually have it written on a post it note at work and stare at it every day  wondering if i should purchase it or not (he really is stubborn when it comes to taking his meds) so wonder if I should pursue it or not. It would be good to hear if anyone else is taking it or not as I first came a cross it on this forum a few months back.

[claicarterParticipant]

Wow, 38 to 10 is excellent after just one round.  Were you at all disapointed that it then only dropped by 4 after round 2, although still a great result? It would be great to hear his round 3 results when you get them as your hubby sounds just ahead of mine in terms of treatment. Are they planning  SCT too?  C

[sabsParticipant]

Hi, We were pre-warned that there could be an initial big drop, if anything I was more relieved to know that the chemo was working. Tomorrow we find out what the results were from cycle 3 and he does his bloods for the end of cycle 4 so i’m guessing if I bug someone they can tell us by next week when the results are back what his levels are.

As he’s on a trial he is going to be randomized he either has the SCT or he has another 4 cycles of chemo twice a week, but again while its working it is also causing him to get sick more and more each week after his sessions, they are worried that he wont be able to do his maintenance of 18 months chemo once a week, the sickness and nausea side effects are getting worse each week, it passes but hes ended up in A&E twice now and only gets two good days a week before we start all over again. Right now he’s just about to have a month off, before all the testing and Stem Cell harvest begins so hoping we can go away for a week or so.

[sabsParticipant]

Cycle 3 results only went from 6 down to 4 :/

slightly gutted but still have cycle 4’s results to go and theoretically either a STC or another 4 cycles then followed by 18 months maintenance of chemo once a week – I think we will reach our goal of 0 at some point.

[annkhowardParticipant]

I’ve read lots of your posts with great interest.  Who was worried about how to get her husband to take his meds?  The results I mentioned were in response to a very low dose of curcumin (1 50mg pill daily) in the form of Thisylin as sold by Holland and Barrett, and I haven’t noticed any side effects; I am currently on NO treatment other than this – I understand that it wouldn’t be good in conjunction with heparin or possibly other blood thinners, or if platelets are low.  Although I was very sceptical about the possibility of its effectiveness, I was happy to give it a go anyway, and glad I did.  Today I’ve found a UK source of tablets in a larger dose with an ingredient added to aid absorption, and I don’t mind being a guinea-pig and reporting back if it helps.  I’ll be posting reports, in any case.

 

[sabsParticipant]

Hi Annkhoward,

It would be good to hear how things go for you, I think i am almost definitely going put him on Curcumin (did notice H&B sell the supplements) once his treatment has finished, we still have a long way to go but he is on his months break from the trial and its amazing how much he’s changed only being on one tablet as opposed to several different kinds he’s almost 85% back to normal I am dreading having to go down the route of taking the medication again once the stem cell harvest takes place and the 18 months of maintenance

Has anyone taken Curcumin while on chemo does it help or just add to the mix and make you more nauseous ?

 

 

 

[annkhowardParticipant]

Update on progress with curcumin: my last blood tests showed that I’m on a stable remission, so the consultant extended the gap between appointments to 7 weeks (previously monthly).  However, after trying a different source of curcumin (‘Curcusorb’), which claims to improve the rate of absorption, I started to suffer severe diarrhoea.  I’ve been looking at Prof. Aggarwal’s blogs and find that others have also had the same problem.  I’m sorting myself out with the help of Penny Brohn’s advice in her book ‘Nourish’ and intend to restart the Thisilyn but on alternate days only.

At the women’s cancer support group where the others (who are old hands) were discussing curcumin but told me that one needs to get the ‘right kind’.  The member who seemed most au fait wasn’t present at the last meeting & none of the others was able to help, and meantime I can’t seem to find any further advice for the present.  I know that some people have been taking turmeric as a tisane – 2 heaped teaspoons in hot water, and I did try a small quantity which I found unpalatable, and am told that this may be beneficial for general health, it might not be much use in myeloma as the bioavailability may be poor.

I’ll report back after my next blood tests in early October.

Sabs, I’m not at all sure that chemo + curcumin would be all that wonderful if the chemo is already causing sickness.  Best check with the doctor anyway – good luck!

 

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