The FAP Gene Support Group

(Familial Adenomatous Polyposis)

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In 2008 we started to explore curcumin to control the colonic polyp in our 14 year old son's Familial Adenomatous Polyposis in our desire to delay surgery for as long as possible. Our first hope was for him to reach age 18 to allow him to make his own decision regarding medical intervention which gave him time to study for his GCSE exams without interruption from surgery and following recovery.

Back in 2008, as a minor at age 14, understandably there was pressure from the medical department for immediate surgery to take place. A polyp count of 150 plus would have him at risk as the FAP polyps can escalate in an unpredictable manner, therefore we went about to present to the NHS evidence based research papers of curcumin safety in humans, along with other studies which showed curcumin having a positive effect upon the biological pathways that will slow down polyp development. With the Oxford genetic department, satisfied safety was evident and they agreed to support a 9 month trial period of curcumin use with a colonoscopy at the end of that period. Following the 9 months of curcumin, the polyps remained stable so it was agreed for the curcumin evaluation to be extended a following 12 months, with this now the general procedure for all three following our 2nd son and daughter now joining the trial with their fist colonoscopy evaluation in 2010.

Here in 2016, all three still continue to take curcumin as it seemingly does manage their polyps for they have not needed surgery up to 2016.

Regards the curcumin dose, this has been raised from a low dose of 1-2g in 2008, to now a dose of 12g a day in 2016 with adjustment needing in a age related polyp increase. We have noted that from age 16 the polyps expression seem to increase dramatically needing a higher dose of curcumin of 8g a day by the age of 18years.
Over the 8 years of our curcumin use we have not only explored different dose amounts, but also have tried a combination of curcumin with EPA fish oil. In the last 2 years there has been a switch from standard yellow curcumin to a white curcumin 'tetrahydrocurcumin'. Tetrahydrocurcumin (THC) is more potent than the standard yellow curcumin, also smaller and non staining, yet it can cause some discomfort in the belly with a rapid gas build up and much looser stools. The tetrahydrocurcumin we use is produced by Sabinsa.corp in their 'Sami Labs', Bangalore, India whereby the yellow curcumin goes through a longer process for tetrahydrocurcumin be the outcome, this compound is marketed as 'C3 Reduct' via supplement companies under their own label . In our 3 year experience of using tetrahydrocurcumin, 'C3 Reduct' is showing some encouraging results in our two sons aged over 20. The polyp expression is extremely low in their case of classic FAP- classic being the mutation on the APC gene is in the hot spot area of sequence.

In our second son, now aged 21, we tried combining curcumin with highly concentrated EPA fish oil called 'Alfa capsules' supplied by SLA Pharma from 2012 to 2015. The results had shown some promise, yet unfortunately the supply of Alfa Capsules became to intermittent so to allow a continued and fair evaluation of results.
Our daughter is the third person to start taking curcumin for FAP at the youngest age of 11 years and 10 months at 1g a day and did not experience any adverse effects. Her polyp count has remained stable at around 40-60 from 2010 to 2012, but under the spray dye colonoscopy in 2013 the numbers seem to have doubled. Yet we now realise this was due to the spray dye used which reveal microadenomas (small polyp hives) which are normally unseen with the naked eye without the dye. The spray dye allows consultants to gain insight of polyp development into the next 3 years or so, but for our yearly polyp comparison it became a little alarming at first when the polyp numbers doubled in 2013.

Below is a basic chart of results, with columns giving the year of the scope; the polyp results that year; the age of the person; and what dose was used over the 12 months to give the results.
A good example of curcumin efficacy can be seen in the 'Male 1' listing for 2012, whereby 300 polyps developed with 200 pedunculated forming due to remaining on such a low dose of 2g a day between the years 2010 - 2012 without a scope performed in 2011. This shows that between the ages 16 to 18 years the polyps elevated to an alarming level without being observed. The dose was increased to 8g a day with a second scope taking place 6 months later to evaluate the polyp development. Thankfully the polyp expression came back down to a safe level to have surgery postponed with our son to continue with his curcumin for another 12 months.
I hope the chart is helpful, and although polyp numbers seem to fluctuate a little due to different consultant's estimation, the polyp estimation is stable if the number increase is no more than a hundred, with the main area to observe being the polyp type (pedunculated) and size. Pedunculated are when the polyps have stalks, like mushrooms for they can potentially becoming cancerous quickly. Any polyp over 8mm is also viewed as a concern and for any1cm or over in size must be removed.

FAP Gene would like to thank Peter and his family for the information in this update.

Male 1

Year

Polyp Numbers

Age

Dose used to gain result

 

2008

100-150

x1 Removed

14

Yellow curcumin

2g -3g a day

(divided into four doses)

 

2008

(9months later)

150

x7 biopsied

14

Yellow curcumin

2grammes a day.

(500mg four times a day)

 

2010

50

all below 2mm

 

 

16

Yellow curcumin

2g a day

(500mg four times a day)

 

2012

250-300

x200 pedunculated

x 1 removed

 

 

18

Yellow curcumin

2g a day

(500mg four times a day)

 

2012

(6 months later)

100 (numbers drop due to increase of curcumin dose over 6 months)

x50 pedunculated

 

 

18

Yellow curcumin

8g a day

(Divided 3g ; 2g ; 3g)

 

Spray-dye used from 2013

 

Spray-dye is used to reveal microadenomas that would otherwise not be seen in previous colonoscopies.

The new comparison starts here.

 

 

 

 

 

2013

 

200-300 (numbers increase under dye)

zero pedunculated

 

 

19

Yellow curcumin

8g a day (3g; 2g; 3g)

 

2014

 

200+

zero pedunculated

x4 removed

 

20

 

 

white curcumin C3 Reduct

(Tetrahydrocurcumoid THC)

 

x5 400mg Reduct tablet

equal potency of

7.5g of Yellow curcumin)

 

 

2015

 

100+

zero pedunculated

few 5mm removed

 

21

 

White curcumin C3 Reduct

8 Reduct tablets (3200mg)

Equivalent potency of 12g of yellow curcumin

Plus tried Alfa capsules 2g (x4 capsules) for 6 months

 

2016

 

200

Small adenomas

none larger than 8mm

non removed

zero pedunculated

 

22

 

White curcumin C3 Reduct’

8 Reduct tablets a day

Equivalent potency of 12g of yellow curcumin

1 tablet = 400mg

Zero Alfa

 

 Male 2

 

Year

Polyp Numbers

Age

Dose used to gain result

 

 

2010

 

80-100

x1 pedunculated

x 1 removed

 

15

 

1.5g a day (500mg three times a day)

 

2011

 

100

Biopsies taken

 

16

 

1.5g a day(500mg three times a day)

 

2012

 

100

x1 pedunculated removed

 

17

 

3g a day first 6 months then

6g a day

 

Spray-dye used from 2013

 

Spray-dye is used to reveal microadenomas that would otherwise not be seen in previous colonoscopies.

The new comparison starts here.

 

 

 

2013

 

200-300 (numbers increase under dye)

x 7 removed over 5mm

 

 

18

 

6g curcumin ( 2g three times a day)

 

Plus 1g Alfa capsules (x1 twice a day)

 

2014

 

150

x 2 removed over 5mm

 

19

 

8g curcumin ( 2g four times a day)

 

Plus 2g Alfa capsules (x1 four times a day for 10 months)

 

2015

 

150+

x5 reaching 1cm

Increasing numbers of

pedunculated up to 7mm

 

20

 

12g a day ( 3g four times a day)

 

Plus 1g / 2g Alfa capsules (for a 8 month duration)

 

2016

 

No estimated numbers given

Predominantly small flat polyps up to 6mm

A few up to 8mm

No pedunculated

 

21

 

White curcumin C3 Reduct

10 x tablets a day

Dose 2; 3; 3; 2 a day

Potentially potency 15g of yellow curcumin

1 tablet = 400mg

 

Zero Alfa

 

 Female

 

Year

Polyp Numbers

Age

Dose used to gain result

 

2010

 

50-60

Several biopsies taken

 

13

 

1g a day (500mg twice a day)

 

2011

 

50-55

x16 pedunculated removed

 

14

 

1g a day (500mg twice a day)

 

2012

 

40

x 4 biopsies taken

Zero pedunculated

 

15

 

3-6g a day (1.5g- 3g twice aday)

 

Spray-dye used from 2013

 

Spray-dye is used to reveal microadenomas that would otherwise not be seen in previous colonoscopies.

The new comparison starts here.

 

 

 

2013

 

100 (numbers double due to dye)

x 5 removed for biopsies

x2 semi-pedunculated

 

16

 

6ga day (3g twice a day)

 

2014

 

150

x6 removed over 5mm

Zero pedunculated

 

17

 

6g a day (3g twice a day)

 

2015

 

150+

x15 removed for the

Radcliffe Bio Bank (research )

Zero 1cm

Zero pedunculated

 

18

 

6g a day (2g three times a day)

 

Tried Alfa capsules x2 a day

1g for 6 months

 

 

2016

 

150

 

The largest 8mm

Zero1cm

Zero pedunculated

10-15 removed

 

 

19

 

10g a day (10 tablets)

doses

2g; 3g; 3g; 2g

 

I tablet = 1g

Non steroid anti-inflammatory drugs 'NSAIDs'

Below I have included an image as a guide to sequence stages from an APC mutation to full colon carcinoma.
A non Steroid anti-inflammatory drug (NSAIDs) is a label that can cover many medicines or compounds. Examples of NSAID's used in FAP research are sulindac, celecobix , asprin, Epa oil (alfa caps), and curcumin. There are research papers available which show how NSAID's affect the development of polyps in FAP if you wish to explorea more technical understanding, but for simplicity I have marked on the image various stages the NSAIDs have been reported to have efficacy.
You will find my illustration is compatible to many scientific research images used.
Link examples

 

http://syscol-project.eu/wp-content/uploads/2011/11/ab_stor.gif

http://www.scielo.br/img/revistas/ag/v42n2/a07fig02.gif

http://www.bu.edu/synapse/files/2011/01/cancerprogression.png

Curcumin Chart

Overview

It has become clear over the years that each person has their individual level of accelerated polyp expression and this makes it impossible to predict results in each taking the same dose. In each person there requires an individual progress evaluation and adjustment to their dose.

The yellow curcumin has given us some good results over the years to bring polyps down in size and numbers without health risks.
The Tetrahydrocurcumin (white curcumin) has shown a slight edge of success in our use over the last two years.
Not only are they smaller tablets, but less are needed and they do not stain fingers or clothes. They do present more discomfort as in belly aches, and the need to go to the toilet, but our two sons have found it to settle down over time. Our eldest son finds three tablets taken at one time is too uncomfortable however he is fine with two, whereas our second son is now okay taking three at one time.

Alfa capsules we had hoped to take for a minimum of 3 years in combination of taking curcumin, but with supplies becoming a problem the experiment had to be terminated before we could get a clear picture. Mick Mason has been informed by SLA Pharma their Alfa capsules (fish epa oil) will be available once again.

Regarding dealing with the side effects, in our experience, if a curcumin dose is introduced slowly at first, young teenagers can tolerate yellow curcumin very well, even at high doses of 8-12 grammes a day. The worst side effects are the looser stools, which can be resolved by eating an egg in the morning, and mild nausea or even stomach ache if taken on empty stomach - especially first thing in the morning.

White curcumin can be a little more difficult to tolerate due to its potency, but by introducing it very slowly over a longer period of time than yellow curcumin the dose can be acceptable.

Alfa capsules have not caused any negative reactions, but once again avoid them on an empty stomach as they can cause some nausea. Also if you decide to bite the capsule, the epa oil can have a burn effect on the tongue.

Curcumin
The yellow curcumin we use is 'curcumin C3 complex' produced by Sabinsa.corp.
Sabinsa's Curcumin is sold under many known brand names with the links listed on this site:

Tetrahydrocurcumin
Tertahydrocurcumoid (THC) we use is called 'C3 Reduct' and visually differs from standard curcumin by appearing white.
In human consumption THC starts off as a standard curcumin, but whilst in the human intestine it is converted into tetrahydrocurcumin by E. Coli. Curcumin, also metabolized by other reductive enzymes in human body to become a tetrahydrocurcumin, and the resulting tetrahydrocurcumin is responsible for various activities associated with curcumin in the body. For example THC is far more bio-available,easier to be absorbed, and potent. Sabinsa.corp takes the standard curcumin through a further process to produce the THC.
The potency of THC can make it more upsetting to the stomach. We have found taking two tablets (800mg) comfortable, but taking three in one dose can evoke a feeling of needing to go to the toilet after 90 minutes, either just gas bloating, or a genuine need to go to the toilet.
We can only recommend the use of the Sabinsa product as it is produced to a high standard, absent of microbes,and delivering 95% active curcumoids from processed Asian spice tumeric. Standard turmeric on the shelf only delivers approximately 5-10 % active curcumoids.
It is worth a note; UK human clinical trials in Leicester use the Sabinsa product due to its many years of proven high quality.

Contact Sabinsa.corp http://www.sabinsa.com/contact/contact-sabinsa-usa.aspx

Website Link http://www.sabinsa.com/products/standardized-phytoextracts/c3/

Website Link http://www.c3reduct.com/

Website Link http://www.sabinsa.com/products/faq/c3reduct

 

Alfa Capsules

 

Alfa capsules are a concentration of EPA fish oil produced at a high standard and supplied by SLA Pharma, available on prescription through a consultant.

Website Link http://www.slapharma.com/

 

More info of the clinical trial of Alfa EPA oil:

http://www.clinicaltrials.gov/ct2/show/NCT00432913?term=S.L.A%2BPharma&rank=4

 

We would like to thank the Oxford Genetic department for all their support and expertise in working with us to maintain a safe working practice in our personal exploration of curcumin& Alfa Capsules

 

An update will be in 12 months.

 

If anyone wishes to know more details, please contact Mick Mason who will forward my contact e mail

mickmason@fapgene.com

 

 

Mick Mason

Secretary

The FAP Gene Support Group

 

Tel 01664-566101

 

12 Freeby Close

Melton Mowbray

Leicestershire

LE13 1HN

 

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