[DaiCroParticipant]

Curcumin as a supplementary medication for MM has been around for quite few years to my knowledge. When I asked my consultant about it about 3 years ago she rolled her eyes and in essence said 'Please don't start down that road. I am sure that there are plenty of good supplements out there that might do you the power of good but we don't know what effect they may have on our mainstream treatments. We have found problems with Vitamin K and some citrus fruits but there is not the time or the expertise to test them all. My advice is to wait for remission periods and try them then.' 😛

Remission periods? What are they when they are at home ????? 😀 🙁 🙂

We need a few remission bods to try a few supplements and see if they feel any benefits. Orderly queue please. 😎

Dai.

[MothasParticipant]

Nobody really knows as there hasn't really been enough research.
I wouldn't take it whilst undergoing treatment or soon afterwards but it probably wont do you any harm. Whether it'll do you any good is anyone's guess though >:-)

[janwParticipant]

Hi Scott,

Six months prior to my diagnosis of myeloma I suffered 3 bad colds which unusually developed chest infections and took ages to recover from the cough. During my 4 cycles of CDT, I caught another cold from hubby which again developed a chest infection and I felt really rough for six weeks. After going through SCT, I was worried about catching further colds during the recovery period so I started researching on the net about possible supplements.

I was attracted to curcumin because of it's reported anti bacteria and anti virus properties. Also Margaret's curcumin blog is very interesting which details lots of worldwide research on curcumin and cancer, in particular myeloma/MGUS and light chains. Before taking the supplement, like Dai, I discussed it with my consultants and both were not impressed with the idea, suggesting further research needs to be undertaken. But both had myeloma patients who were extremely positive about curcumin.

I started taking curcumin three months after my SCT, gradually building up the daily dose in order for my body to become used to the supplement. (On Margaret's blog she provides information about recommended daily doseage.) I am really pleased I have achieved three years of remission with just one cold virus last Christmas and one attack of shingles. On both occasions, my light chains increased by 200 whilst my body was tackling the bacteria/virus. However, after the shingles, unfortunately the light chains did not reduce to their original level.

I buy my supply of Doctor's Best curcumin from Bodykind in the UK, but because of the high monthly cost I was interested to find the same product available in America at half the price. Although the packaging of the product was the same as the UK, the tablets did not have the usual smell or leave the yellow residue on your fingers when handling them. After chopping up the tablets, I soon realised I had purchased a fake supplement. Interesting, a month after taking the fake curcumin supplement from America, I suffered with the outbreak of shingles. Was this a coincidence, I will never know but it did convince me to continue taking the supplement from a recognised supplier in the UK!

Regards Jan

[BADGERParticipant]

hi Scott

385 means I am hovering between 18 and 20% according to my consultant it always seem like the sword of damacles is hanging over my head:-P
Keep well
Love Jo

[scott9Participant]

Hi Jan

That is hugely interesting. I've ordered a supply from Amazon and it redirected me to Detoxpeople who are based in Essex. I've got 120 capsules at 500mg for £30. Hopefully they are genuine. I'll wait for three months post SCT before I start to take them. What is this blog by Margaret you mentioned? Please can you post a link to it. I was just going to take the one pill a day per the instructions. How many do you take? You have done brilliantly to achieve three years from the SCT. I know one poor chap where it didn't work properly and he is straight on to Velcade to try to get remission. I'm praying it will work for me after all the hassle of hospital and recovery etc. I'll find out when I have the bone marrow biopsy in November I suppose.

All the best

Scott

[scott9Participant]

Hi Jo

That is a great description ie the sword of Damacles. That is exactly how I feel about it as well. I'm seriously hoping the SCT hasn't wrecked my kidneys. I'll let you know what the next creatinine reading is for me in due course.

All the best

Scott

[janwParticipant]

Hi Scott,

You should find Margaret's website under margaret.healthblogs.org/ There is a wealth of information about curcumin studies which have been carried out in various countries, together with a wide variety of other interesting topics such as omega 3, vitamin D, quercetin, sugar, diet, aspirin, etc. If you have a look at her curcumin side effects and health warning page, it details when you should not consider taking curcumin such as if you are suffering with gallstones, taking blood thinning drugs, have a stomach ulcer, undergoing chemotherapy, if you are considering pregnancy, etc.

I started with her suggested curcumin protocol of taking one gram for the first week, two gram the second week, building up to 6 – 8 gram per day. Apparently you should look for a brand which contains at least 95% curcuminoids to be effective either with or without BioPerine (an extract of black pepper). You can buy curcumin in 500 mg or 1000 mg versions. In total, I take 8 tablets of 1000 mg per day with the combined bioperine (which is supposed to promote absorption) in one dose on an empty stomach during the evening. On the downside it's a large amount of tablets to take per day and costly at around £80 a month. Some people cannot tolerate such a high amount because of bowel distress or other side effects such as rashes and hives, which is why the suggested gentle build up approach to the daily regime.

I don't think you ever stop worrying about how long a remission you will achieve after undergoing your current treatment. Fingers crossed, the SCT will work for you and provide a good remission period. Hopefully one day research will be able to tell us why certain drugs are resistant to stopping myeloma progressing in certain individuals and doctors will be able to prescribe a more individualised approach to our treatment rather than the current "one size fits all" with our prescribed first, second and third line recommended drugs.

Regards
Jan

[scott9Participant]

Thanks a million for the information Jan. I'll try working up to 8 grams a day as well, when I get started in November. I looked through Margaret's blog and also discovered something called Nigella Sativa. I must order some of that as well.

All the best

Scott

[janwParticipant]

Let me know how it goes. Just watch out for the curcumin stains on your fingers or clothes if you handle the tablets. I have to tip the tablets onto a saucer and use a spoon to handle them, otherwise it takes ages to remove the stains from your fingers and clothes. Jan x

[BADGERParticipant]

hi Scott

just been to see my kidney consultant he has advised me to drink less and give my kidneys a rest he recommends 1 1/2 to 2 ltrs a day only don't know what to think, what do you think about that. he said they should not be working too hard to get rid of the fluid
Regards Jo

[suewiParticipant]

Hi Scot
I thought I would give them a try started last week, no side effects, mine are capules it said take 3 per day with meals, I am taking 2 per day they curcuminX4000tm.
Good Luck
Susan

[scott9Participant]

Hi Jo

Just read your post as I have not been feeling too great the last couple of days. The SCT has really knocked me over. Its a very slow recovery process. Ah well, got to be done! I've been trying to drink three litres a day for goodness knows how long. I actually don't measure it but just drink cups of tea and lots of squash. I'm into grapefruit squash these days. I suppose if you drink about 2 litres a day its not hugely different. I always thought it was best to keep the kidneys flushed through. Still I guess your consultant knows what he is talking about.

Hi Susan: Lets hope the curcumin does us some good. I'll start on it in November and build up per the blog that Jan directed me to.

All the best

Scott

[Kazzam2Participant]

I don't know what these things are?? What are they? Going down now to the clinic

The above is the reply I have just recieved off my consultant when I asked for her opinion on curcumin !!!
🙁

Good luck
Karen

[Kazzam2Participant]

Sorry forgot to say Hi Scott
🙂

[phil47Participant]

Hi,
I realise it is quite a while since any posting on this chain but I thought I’d keep it all together rather than starting a new one!
I had my 2nd SCT in Jan 15 and my pp is now undetectable for the 1st time since diagnosis 3.5 yrs ago. As i am not on any form of maintenance I have decided to give Curcumin a try as I felt it can’t do any harm. However, my Consultant chaired one of the Info days a couple of years ago and someone asked about recommended dose. He said there was no clinical evidence and therefore would not advise on this.
I have read up on this myself and read Margarets blog which suggested working up to 8g per day as Jan had mentioned in an earlier posting. However, there are many versions of Curcumin out there and I read the most effective are those containing BCM-95 and Bioperine which can increase absorption by up to 7 times over Curcumin alone which is poorly absorbed. The version I take which has all these ingredients is AlphaCurcumin Plus, which come in a bottle of 60 tablets each containing 250mg Curcumin and cost around £30. If I were to take 8mg per day this would be 32 tablets and cost me over £100 per week but because of the high absorption would I be overdosing (as well as rattling and skint!)?
I would appreciate any comments on how people who were taking it when this original discussion was set up 2 years ago are doing, and which versions of Curcumin they are taking, in what dose, and how that was decided upon.
I dont ask for much do I?!
All the best to everyone
Phil

• This reply was modified 8 years, 8 months ago by  phil47.

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