The FAP Gene Support Group

(Familial Adenomatous Polyposis)

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FAP Polyps Management

A family story of delaying Surgery in teenager with FAP for over 10 years

 

December 2018 update View as PDF File

By 2008 three of my four children were found to be carrying my mutation for Familial Adenomatous Polyposis (FAP).

We have managed to keep all three cases of FAP colonic polyp numbers down to a safe level for over ten years, and this is still on-going.

In March 2008, our eldest son at aged 14 years had a count of 100- 150 polyps before he began taking curcumin.

Over the ten years of use there has been a mix of increases and also reductions on polyps numbers but the eldest son age 25 in February 2019 he is now close to his original count of back in 2008 when age 14.

His two younger siblings then ages 12 and 13 in 2008 also began taking curcumin 2 years before their first colonoscopy in 2010

Naturally everyone wishes to know if curcumin actually works, and in our use we are confident to say it has worked for us not only in keeping numbers of polyps down, but also in this apparent reversing of polyp numbers. This can be observed clearly in ‘Male 1’ on the chart below whereby in 2012 his polyp numbers rose alarmingly whilst left on a low dose for 2 years. Clearly he had outgrown his low dose of 2g a day yet fortunately a dose of 8g (8000mg) of curcumin a day was strong enough to reverse the alarming polyp numbers from 300 to a new total of 100 in just 6 months. It was a remarkable test of curcumin’s ability for there is no other explanation to why 200 polyps would disappear.

I hope the chart is helpful, and although polyp numbers seem to fluctuate a little due to different consultant's estimation, and when a spray dye is used the polyp seemingly to double numbers as many tiny polyps are revealed and counted.

The term pedunculated refers to a polyp on a stalk like a mushroom, whereas a sessile polyp is a low level round almost a button mushroom.

Below is a link to polyp descriptions to copy and paste

https://www.cancer.org/treatment/understanding-your-diagnosis/tests/understanding-your-pathology-report/colon-pathology.html

 

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

 Male 1
Eldest Son

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

 

2017

200+
All 2mm - 3mm
Non removed

23

White curcumin ‘C3 Reduct’
(Tetrahydrocurcumin)
8 Reduct tablets a day.
(two tablets four times a day)

2018 150 only two 13mm sessile polyps removed in the descending colon 24 White curcumin ‘C3 Reduct’
(Tetrahydrocurcumin)
8 Reduct tablets a day.
(two tablets four times a day)

  Male 2

Youngest Son

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

2017 200 +
Mostly small but an increasing number
of polyps 9mm – 12mm in size
8 removed.
22

White curcumin ‘C3 Reduct’
And
Yellow Curcumin C3 complex


10 white 400mg tablets a day
&
4 x Yellow 1000mg tablets a day

2018

200+
Some flat polyps up to size 2cm in the
transverse colon but still low grade
dysplastic (cell changes)

23

10 white 400mg (curcumin Reduct )
&
4 x Yellow 1000mg tablets a day

 

Female
Eldest Daughter

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 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

 

Zero pedunculated

10-15 removed

 

19

10g a day (10 tablets)

doses

2g; 3g; 3g; 2g

 

(I tablet = 1g)

2017

200 +

The largest polyp size is 5mm
Non removed

20 first 6 months
8g a day of yellow
&
three 400mg white reduct
next 9 months of
10g – 12g yellow ( 10 – 12 tablets)

2018

200+ similar to last year with one 6mm semi pendunculated removed

21

up to twelve 1,000mg tablets a day

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 explore 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

 

Over the years the curcumin dose has been raised from a low dose of 1-2g in 2008, to doses of up to 16g a day in adjustment to an 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 ten 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 and a shift from yellow curcumin to the white curcumin tetrahydrocurcumin, (this being a more potent and in a smaller tablet form and it doesn’t stain) yet they can cause some belly ache issue at first.
The curcumin and tetrahydrocurcumin we use is produced by Sabinsa.corp in their 'Sami Labs', Bangalore, India. To produce tetrahydrocurcumin the yellow curcumin goes through a longer extraction process for the compound to become white.

In the son who has a stronger polyp push expression we have 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 limited in supply preventing a fair evaluation of results.
Our daughter (youngest of the three) was introduced to curcumin at 11 years old and 10 months at 1g a day with negligible 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) 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 appear to double in 2013 when the dye revealed micro polyp bumps to be included into the count previously unseen in other colonoscopies

There is no doubt curcumin has worked in suppressing polyp advance in our three children with FAP.
with clear example I have already mentioned of effective reversing of polyps is in our eldest son back in 2010. To go into more detail, it was his stable condition in 2008 on a curcumin low dose the NHS decided his next surveillance could wait 2 years. In this period of time his polyps elevated from 150 to 300 (with 200 being pendunculated). This was a critical situation with so many pedunculated polyps (on stalks) Yet after raising the curcumin to 8g a day for 6months his polyp count reversed to only 100 with 50 pedunculated. This clearly confirmed curcumin had a leading effect on polyp expression, not only to hold back, but also reverse the polyp expression.
It has been in our observation there is no fixed family inherited expression, as each individual produce their own level of accelerated polyp development making it impossible to predict numbers for a fixed base dose per age. The FAP expression of polyps may be due to the persons own metabolic system as we have discovered between our two sons, whereas one will miss many doses due to night shift work yet his polyps seem to be very stable, whereas our second son is more careful with his dose taking, and even takes more per day yet has the most consistent concern of expression that is more problematic to manage.

The yellow curcumin has given us some good results over the years without health risks. The Tetrahydrocurcumin (white curcumin) has shown an equal effective method of management also more convenient in size and non-staining.

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.

Regarding curcumin side effects, in our experience, if a curcumin dose is introduced slowly at first, young teenagers can tolerate curcumin very well, even at high doses of 8g a day. The worst side effects are the looser stools, which may 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. Yoghurt can greatly help with the stomach upsets.

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, but unfortunately far more expensive to buy.

Alfa capsules (concentrated EPA fish oil) have not caused any negative reactions, but once again avoid them on an empty stomach as they can cause some nausea. Plus if you decide to bite the capsule, the epa oil can have a hot effect on the tongue due to the concentrated fish oil. In the UK these can be prescribed by a consultant.

Curcumin
The yellow curcumin we use is 'curcumin C3 complex' produced by Sabinsa.corp.
Sabinsa's Curcumin is sold under many known brand names like ‘Dr Best’. You will not find Sabinsa as a labelled product, but if the curcumin states ‘Bioperine’ then this is their trade mark.
There is a list with the links listed on this site for suppliers, but as suppliers update their sites the links may become obsolete.

Tetrahydrocurcumin
Tertahydrocurcumoid (THC) we use is called 'C3 Reduct' and visually differs from standard curcumin by appearing white.
In human consumption within the digestive system, the standard curcumin 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 as if in the human digestive system.
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 (1,200mg) can evoke a feeling of needing to go to the toilet after 90 minutes, either due to 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 turmeric. 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

Website Link https://www.sabinsa.com/media-coverage/1013-india-made-turmeric-extract-gives-uk-cancer-patient-new-lease-of-life






Website Link https://www.sabinsa.com/products-from-sabinsa/127-curcumin-c3-complex

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

Contact Sabinsa.corp https://www.sabinsa.com/contact-us/


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