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HALO Treatment

Printed From: Barrett's Support Forum
Category: Barrett's Support Forum
Forum Name: Barrett's Oesophagus
Forum Discription: Your Questions about Barrett's Oesophagus
URL: http://www.barrettscampaign.org.uk/forum//forum_posts.asp?TID=1444
Printed Date: 22 Oct 2019 at 4:26pm


Topic: HALO Treatment
Posted By: bluetobits
Subject: HALO Treatment
Date Posted: 16 Mar 2015 at 1:59pm
My third scope due in two weeks - time to worry again
no dysplasia last time and no indigestion symptoms in two years as a result of taking PPI's

If I have any change then would consider paying private for halo treatment - even if just LGD found

cancer research site is not as positive about this treatment as some posts I have read regarding light sensitivity afterwards - how problematic is this?



Replies:
Posted By: chrisrob
Date Posted: 16 Mar 2015 at 3:44pm
All the best for your next scope. hopefully. no changes will be seen. Mine hasn't changed over 21 years.

If LGD is found, you may now get RFA on NHS now. (We're not supposed to call it HALO now as that was trademarked by another company for some different medical equiment.)

I'm not sure which CRUK page you looked at an wonder whether you were looking at the PDT page rather than RFA?

Photo Dynamic Therapy is seldom used now there are better treatment options. It used drugs that made your cells light sensitive and a laser then burned away the Barrett's cells. RFA doesn't make your cells light sensitive. It burns away the Barrett's cells.

https://sites.google.com/site/barrettswessex/JOURNEY/journey25 - It is described here.

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http://www.barrettswessex.org.uk - www.barrettswessex.org.uk


Posted By: bluetobits
Date Posted: 16 Mar 2015 at 4:27pm
Thanks For that Chrisrob

Do you know anyone who has had this procedure?
Is it painful? Are you treated under sedation?

this will be my third time without sedation - it's unpleasant but not painful and only lasts about 20 mins.


Posted By: chrisrob
Date Posted: 16 Mar 2015 at 4:54pm
I've had plenty of scopes and sedation has no effect on me. It is uncomfortable but doesn't take long.

I haven't had HALo though there are a number on this forum who have. I expect Jeff will chip in soon.
I believe it's similar to being scoped except it takes longer and the gastroenterologist who performs most of the treatments at our hospital says he mixes an opioid into the sedative to make it far more comfortable for the patient who probably doesn't know a thing as it happens.

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http://www.barrettswessex.org.uk - www.barrettswessex.org.uk


Posted By: jcombs99
Date Posted: 17 Mar 2015 at 1:53am
blue
    If you have LGD or HGD @ the scope get it done NOW !!! I would Halo just barretts because over the long its cheaper to be done with it then watch it .The NHS does what it wants and I do what I want. It's no big deal Halo see what the scope shows . Take your PPI's and watch your diet while trying to look like a PENCIL slim is always better.
   Blue make sure you live a perfect life for the next 2 weeks so the Doc can get a GOOD LOOK at an O that's not inflamed which would be a total waste of time for you both .
I'm on Shark watch overlooking Kona Hi. Beach . I hope they don't show up while I'm drinking my Gin and Toni would be a bit rough for them.

CHEERs

HGD Jeff   


Posted By: bluetobits
Date Posted: 17 Mar 2015 at 7:50am
28 years ago I had my first Scope with no sedative sat vertically upright, head back in a chair with the scope inserted straight down by the specialist stood on a raised platform to give him access - quite unpleasant - think the camera had previously been used by the BBC outside broadcast team!!!!!!
Diagnosis sliding HH ?

10 years ago had a second scope under sedation laid horizontally never felt a thing and slept for two hours after - Diagnosis the same with no Barretts but placed on PPI's
6 years ago third scope Barretts which raises the following issues with me:-
1. Taking PPI's did not prevent Barretts
2. Now I've got it how will PPI's stop it getting worse?
3. If I have the old HALO treatment will Barretts not return as the route cause is still there (HH) and the PPI's do not prevent it in my case?


Posted By: jcombs99
Date Posted: 17 Mar 2015 at 4:18pm
b
   PPI's are a very good thing or I would dead by now so take them @ the correct dose and time .The NHS is only going to do the tests they want and will make you wait . I had 3 tests in one day and knew I had a 4cm HH and weak LOS (valve) so BAD leaking plumbing.Had a fundo didn't work there will be no REfundo poor chance of it working .I've have been or talked to 14 doctors(Gi's , Surgeons never Gp's) about my case so learn to be wise about your case because 2 cases aren't a like . Had Halo 5x over 7 years IT came back and will come back again .But you reset the barretts Data you start from day one with normal tissue. That's why Halo is great and no one gets that concept. Lets hope your doctor doesn't put the scope through the wall of the O my doc has never done that .Remember unlike the NHS me and my doc think size doesn't matter . He has seen cancer in 1/4 of CM(speck) of barretts.
I never worry about barretts ( don't have it) I get scoped every 6 months .
Wait for the Scope .
HGD JEFF


Posted By: chrisrob
Date Posted: 18 Mar 2015 at 8:25am
Every single mutated Barrett's metaplastic cell has the propensity to mutate further to dysplasia and beyond.
The more metaplastic cells you have (ie the longer your Barrett's), the greater the chances one of them will start progressing.

But it must be stressed the chances are extremely small. In most of us, progression will probably never occur. (I've had my 3cm for 21 years at least without signs of progression.)

NHS guidelines provide for RFA if any signs of dysplasia are seen (LGD or HGD) which is considered early enough intervention.

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http://www.barrettswessex.org.uk - www.barrettswessex.org.uk


Posted By: chrisrob
Date Posted: 18 Mar 2015 at 8:32am
Hi Blue,

You must have had one of the old style endoscopies. Sounds horrendous.
They were first used in China when chicken farmers wanted to see why their hens weren't feeding properly. They used a straw to look down inserted down the poor hen's gullet.
This was then considered for use on people who were having problems and a rigid straight tube the thickness of a broom handle was pushed down the throat. Sounds absolutely ghastly, don't know how anyone could cope with that.
Fortunately technology has advanced and the latest scopes are engineering marvels.
The charity I chair is presently raising funds to buy one that is just 5mm wide but can do everything the normal thickness scopes can. https://docs.google.com/viewer?a=v&pid=sites&srcid=ZGVmYXVsdGRvbWFpbnxiYXJyZXR0c3dlc3NleHxneDpjNjMxMWI3NjFmZjQ0Mw - You can see the details of it here.

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http://www.barrettswessex.org.uk - www.barrettswessex.org.uk


Posted By: bluetobits
Date Posted: 18 Mar 2015 at 10:43am
So just to recap

PPI's do not prevent Barretts nor do they stop it's progression they just stop your heartburn.

HALO brings you back to square one at phenomenal cost privately - lengthy wait on the NHS only for it to return as the source of the trouble hasn't been /can't be removed

Seems to me that all monies should be channelled into fining a stomach valve replacement/repair

Not much hope then So it's a lifetime of uncomfortable Scopes, biopsies, anxious waits and probably Halo 'repair' treatments.


Posted By: chrisrob
Date Posted: 18 Mar 2015 at 12:08pm
The alternative to lifetime PPIs is a https://sites.google.com/site/barrettswessex/JOURNEY/journey19 - fundoplication to strengthen the lower oesophageal sphincter.
NICE have produced this https://www.nice.org.uk/guidance/cg184/resources/cg184-dyspepsiagord-option-grid-to-help-people-make-decisions-about-long-term-heartburn-treatment2 - Options Grid to help patients discuss this alternative with their doctor.

There are other treatments/devices available but not as good as LNF. One that has gained popularity in the States is http://www.toraxmedical.co.uk/linx - LINX which has been around for about 10 years. It has been getting a lot of free publicity as every time a clinic in USA makes this treatment available, it's published as a news story that there's this new treatment to cure acid reflux and always including the (false) claims its manufacturer makes that it's better than LNF because it's reversible and you can burp and vomit afterwards. (Which can all apply to LNF.)
It is a shiny metal 'bracelet' of titanium magnets that is fitted around the oesophagus in an operation similar to LNF - and has associated side effects (mainly dysphagia) lasting a few weeks.
It costs about twice as much as LNF and, whereas it is available on NHS, you'd be hard pressed to find a surgeon who'll do it. It's like paying twice as much for a car that may not go and if not you can pay the salesman to take it back and pay again for a cheaper, more reliable, model.

http://healthnewsreview.org/2015/03/heartburn-hell-on-the-nbc-today-show-omitting-things-consumers-might-want-to-know-about-a-14k-device - This recent news article attempted to expose the fraud used to sell the device.
LINX has an 85% satisfaction rating over the 5 years worth of data available. LNF has a 94% satisfaction rating over the 20 years worth of data available.

I am gradually compiling and writing reviews of the various treatments which will become available https://sites.google.com/site/barrettswessex/treatment/surgical-methods/summary - here soon if you're interested.

However, although anti-reflux surgery and sphincter augmentation devices may remove the need for medication, they will not guarantee there'll be no Barrett's progression and you'll still need regular surveillance scoping every few years.
There is much research on-going attempting to discover those most at risk of progression who need the sureillance.
The Barrett's Oesophagus Surveillance Study ( http://www.cancerresearchuk.org/about-cancer/trials/a-trial-looking-at-how-often-to-monitor-people-with-barretts-oesophagus - BOSS trial ) has been running for a few years attempting to assess the efficacy of scoping on demand with regular surveillance scoping. They've just announced a new trial http://www.ncbi.nlm.nih.gov/pubmed/25767103 - here - but don't expect early results, it's due to run for another 10 years!

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http://www.barrettswessex.org.uk - www.barrettswessex.org.uk


Posted By: bluetobits
Date Posted: 18 Mar 2015 at 1:11pm
Thanks Chrisrob

The last time I came on here two years ago (post scope No2)I went away with the impression that 'HALO' was the way forward if things were going downhill. I had also checked the cost of getting it done private as I have medical insurance.

seems like I wasn't reading between the lines and it would appear that 'Halo' is no miracle cure just a 'patch' that requires replacing such that it is added to the number of scopes in life.


Posted By: chrisrob
Date Posted: 18 Mar 2015 at 1:14pm
Most people don't have to have HALO repeated. But they do need to continue with PPIs and regular scopes.

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http://www.barrettswessex.org.uk - www.barrettswessex.org.uk


Posted By: jcombs99
Date Posted: 18 Mar 2015 at 5:19pm
B
Since you have private ins. go read PaulB posts he did the halo and follow up and has done well and barretts hasn't come back .If you have private ins like I do YOU are in charge of your healthcare not the GOV..PPI's help prevent barretts and size in this case doesn't matter . If you have a good doctor and get scoped every year you should be just find .BUT if you go to 2 to 5 years between scopes who knows .Halo is not or never can be a CURE it just removes everything but cancer and a whole lot better then removing the O with HGD like I HAD ..
    My doctor and I are waiting to see the cancer data from Barretts to cancer with the 5 year scopes .The NHS did this to save Funds I don't care about funds I care about a normal O .

HGD Jeff


Posted By: bluetobits
Date Posted: 19 Mar 2015 at 11:58am
Jeff

Fully understand the NHS/NICE standpoint based on financial restraints/probability & statistics.

My gastro man is using NICE guidelines and was talking about non dysplasia patients being scoped every 3 years not 2 as at present NICE guidelines.

I have read recently that the hospital where I go for scopes has been deemed a specialist hospital for the monitoring of barretts.

My insurance does not cover scoping @ £1500 a time and the last time I checked it didn't cover halo either as this had not been approved by 'NICE'at the time will check again now.

Sorry I'm not familiar with your personal experience and where you are at the moment with Barretts.

I have received a very informative response to my condition from an eminent gastroenterologist (Dr Laurence Lovat) which I will share if anyone is interested






Posted By: chrisrob
Date Posted: 19 Mar 2015 at 12:21pm
Scoping guidance was reviewed in 2013 and the current advice for non-dysplastic Barrett's may be seen in a handy flowchart https://276e46ef-a-62cb3a1a-s-sites.googlegroups.com/site/barrettswessex/treatment/guidelines/2013%20BSG%20Barretts%20treatment%20map.JPG?attachauth=ANoY7cremDwrmszk-PLP2joD6HruNRfvpH76mie8L_WbQJt6AqIbOX6VXfNCKGpMRc1P3BtCozc4tXJ4NCpKlQw3_3teD2OQIFK-kiW-ooQpSms8dLjQ8mADWM7P64zzZVeUNaMfEKqRNvypvzhFNB0P8WudGngEi6cPDKk6jv4U_EKbTtQFrwxl5Z9ofNeY6BJy3GX7lBWMo9U_oISEYFpsr1L4eyCdqW8ug4EHbKRg_QF3hT5NdEqvL1xD0o3AgJJQpLeFykhyLbaFDabOqeKrYiKIZ_sbUQ%3D%3D&attredirects=0 - by clicking here .
Short segment Barrett's should be scoped every 3-5 years and long segments 2-3 years.

The NICE guidance on RFA was reviewed last year and now includes the options for ablation with LGD as well as HGD which was previously recommended. http://www.nice.org.uk/guidance/ipg496 - Click here to read it.
In summary: "Current evidence on the efficacy of endoscopic radiofrequency ablation for Barrett's oesophagus with low‑grade dysplasia is adequate provided that patients are followed up in the long term. There are no major safety concerns. Therefore, this procedure may be used in patients with Barrett's oesophagus with low‑grade dysplasia with normal arrangements for clinical governance, consent and audit or research."
"Current evidence on the efficacy and safety of endoscopic radiofrequency ablation for Barrett's oesophagus with no dysplasia is limited in quality and quantity. Therefore, this procedure should only be used in patients with no dysplasia in the context of research."


I agree, Professor Laurence Lovatt is one of the UKs top gastroenterologists, working at UCLH, and a great advocate of RFA having initiated the UK HALO registry (not to be confused with the https://sites.google.com/site/barrettsoesophaguscampaign/health-professionals/the-registry - UK Barrett's Registry ). (He is also the lead surgeon in a London private practice, http://www.gastrolondon.co.uk/ - The London Gastroenterology Centre.
(I'll be seeing him again next month at the Barrett's Symposium in London.)

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http://www.barrettswessex.org.uk - www.barrettswessex.org.uk


Posted By: bluetobits
Date Posted: 01 Apr 2015 at 8:47am
Scope done without sedation now the worrying wait!!!!!!!

Not happy

My Barrett's is 8cm long!!!!!! not sure if this is in 'patches' or the last 8cm is totally covered but that's 3 inches.

Can HALO deal with this?????

Waiting to see specialist to see what the coverage is and if this is different to my last scope two years ago - no information last time other than no dysplasia - not genned up enough then to ask.

Guy doing my scope told me new guidelines regarding biopsies 4 biopsies every 2 cm - 16 biopsies so the scope lasted a little longer than last time so I can only assume it has increased in area (or possibly the criteria for biopsies has been increased)


Posted By: chrisrob
Date Posted: 01 Apr 2015 at 9:38am
Hi again,

8cm is a long segment (about 1/3rd the length of your oesophagus) but I have heard of longer segments being ablated - one nearly the whole length of his oesophagus at 24 cm!

The size will be recorded using the Prague criteria http://www.iwgco.net/docs/Prague_Criteria_Poster.jpg - as explained in this diagram.

Biopsies are taken every 2 cm according to the Seattle protocol https://sites.google.com/site/barrettswessex/treatment/biopsies - as explained here.

It's most likely they won't try to ablate it all in one go and would cover the length in two or three sessions with the Halo360 and then touch up the bits that were missed with the Halo90.

Were you given information on length previously? Has the area increased? If so, why? You've been taking PPIs?

Hopefully no dysplasia.

All the best

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http://www.barrettswessex.org.uk - www.barrettswessex.org.uk


Posted By: bluetobits
Date Posted: 01 Apr 2015 at 11:47am
Morning Chris

During the scope I heard the numbers 38,36,34,32 the Prague criteria only goes up to 36.

the doctor doing the scope said it looked OK but the biopsies are the key even though it's like looking for a needle in a haystack with regard to detection.

The length was never mentioned to me before so I have no idea if the length has increased and yes I have been taking PPI's points for discussion at next meeting.

What I would like is a testimony from someone whohas had the procedure for HALO - are you awake during the procedure? is it more or less uncomfortable than having a scope without sedation? is it painful afterwards?. Are you unable to eat/drink for a period afterwards.

Being scoped every two years is just long enough to forget how uncomfortable it is without a sedative.

The nurse looking after me said sedation was hit & miss due to the effects being different for each person - not what I wanted to hear as I once had it done under sedation and never felt a thing.


Posted By: bluetobits
Date Posted: 01 Apr 2015 at 11:50am
Chris

Forgot

Do you know anyone who has gone from no dysplasia to HGD or worse between copes?


Posted By: jcombs99
Date Posted: 01 Apr 2015 at 2:05pm
B
   8cm sounds like the same mess I had 7 years ago .Yes you are most correct like looking for a needle in a haystack and it's all in the doctor's skill . One Fool I should say doctor did 2 scopes and 26 biopsies and missed the LGD,HGD my Halo Gi found right before Halo . The reason my doctor and me likes a yearly scope is because What If you miss the needle in the haystack it's four years it's been changing .I would be paying for a yearly scope by another doctor at least and I hope it's nothing worse .
Lots of video on Halo .Sedation has worked like 20x for me it's all up to the doctor skill.

CHEERs


Posted By: chrisrob
Date Posted: 02 Apr 2015 at 12:10pm
I know of one person (out of the hundreds I hear of on the various forums and facebook groups I monitor daily) that this happened to - whose non-dysplastic barrett's had escalated between scopes and she was treated successfully. With a 0.2% p.a. risk of progression each year, there will always be that 1 in 500 but it's too low to worry about. Regular scoping every few years will pick it up early enough to treat.

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http://www.barrettswessex.org.uk - www.barrettswessex.org.uk


Posted By: jcombs99
Date Posted: 02 Apr 2015 at 8:12pm
Chris
    Your forgetful I'm not ..Lizthebob   post 18/Oct/2014 /11:18...That is one of 3 or 5 in the time I've been here who went to CANCER in 2 years .. What they ALL stated " I did what the NHS told me and it went to Cancer "..
   I work I don't have time to look up the others .
HGD Jeff


Posted By: lizthebob
Date Posted: 02 Apr 2015 at 11:00pm
Yes it was me.
Went from no dysplasia to low grade in the 2 year gap. Then low to high in 6 months and then to cancer stage 3 in 2 months. But I may have had the cancer when they diagnosed high grade. When they did the rescope two months later the endoscopist thought he saw a nodule and so biopsied it and sure enough that was cancerous. What surprised everyone is that it was at stage 3 (out of 4). And I was only 40. However that was 4 years ago and I'm still here!


Posted By: chrisrob
Date Posted: 03 Apr 2015 at 8:28am
I knew it was Liz I was referring to previously but my habit is not to name people unless I have their permission first.

Why Barrett's can suddenly escalate in a very small number of cases is unknown but the subject of much research.
(One factor already shown to be relevant is your blood group. Rhesus negatives are more likely than rhesus positives: it's to do with the pooling of Nitrous Oxide at the OGJ.)
Papers have been produced that say for most patients we're scoping too frequently.

http://www.gastroendonews.com/ViewArticle.aspx?ses=ogst&d=In+the+News&d_id=187&i=ISSUE%3a+April+2014&i_id=1048&a_id=26304 - This news item may be useful.

My Barrett's has remained unchanged for over 20 years and I'd be quite happy to wait longer than my present 2 to 3 years between scopes.
Various stages of the BOSS (Barrett's Oesophagus Surveillance Study) trial have been on-going for a number of years whereby patients may opt for regular surveillance scoping as per usual or for "scoping on demand" whereby they do not receive regular scoping but can be scoped if they feel their symptoms have changed.
And a new BOSS trial has been proposed: http://www.ncbi.nlm.nih.gov/pubmed/25767103 - "Barrett's Oesophagus Surveillance versus endoscopy at need Study (BOSS): protocol and analysis plan for a multicentre randomized controlled trial." just a few weeks ago.

The author of the study on blood types referred to above, herself a Barrett's sufferer and a professor of epidemiology, maintaining https://sites.google.com/site/barrettsoesophaguscampaign/health-professionals/the-registry - the UK Barrett's Registry (UKBOR) , agrees that too frequent scoping may not necessarily be a good thing per se but is reassuring for the patients.

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http://www.barrettswessex.org.uk - www.barrettswessex.org.uk


Posted By: jcombs99
Date Posted: 03 Apr 2015 at 2:16pm
    My doctor has a Registry too and I think it's the largest in the US . He also keeps it up to date unlike most others.
    In a nutshell what their trying to do is bring down the cost of treatment by not scoping or scoping when the patient has trouble . Which could be to late most of the OC cases I know had no idea they had LGD,HGD too. Now as far as the blood test I'm in the US test for that but I'm sure my brothers aren't (DNA).This is all in the very early stages or the NHS would do that and forget the scopes .
   Remember some of the greedy ins. companies will pay for a yearly scope in the US and will ablate barretts with no LGD or HGD .The reason is you treat the patient not the masses and it's less costly to treat it early BUT the NHS doesn't think so.
    There is very low risk in doing a scope (10 min) and IF you don't agree with the NHS you go to doctor and let him do a one year scope and the NHS the other then you will have fewer misses and @ no cost to the NHS like I would do. What they should do is bring down the cost per not EXTEND the time frame to save money.

Jeff
    


Posted By: chrisrob
Date Posted: 03 Apr 2015 at 2:45pm
I'm sorry Jeff but you have misunderstood. This isn't an issue where the NHS are just saving money. The guidelines are produced by the British Society for Gastroenterology (who work closely with the American College of Gastroenterology). The NHS chooses to follow their recommendations.

The news item linked to above reports the presentation that Dr Rebecca Fitzgerald gave at the 2014 American Society for Clinical Oncology Gastrointestinal Cancers Symposium in San Francisco.

The reality is logistics.
It is estimated there may be nearly 5 million people with Barrett's in US (and nearly 1 million in UK). We need to identify them before their condition can progress (if it's going to) in order to reduce the number of deaths to oesophageal adenocarcinoma.
If we did identify them all, it would be impossible to scope all of them - even every few years, let alone every year.

In UK, there are presently 30 unfilled vacancies for upper GI gastroenterologists. In Southampton, one of the three main centres for upper GI treatment in the country, we need another 3. Those we have work most weekends already.

It's not to save money that scopes are less frequent than many would like. We have to make decisions based upon likely risk. Those most at risk need to be scoped more frequently than those at least risk. I put myself in the latter category so would be happy not to be scoped as frequently as those who are at higher risk.

If, using the vast amount of data collected in registries (and UKBOR is the world's largest), we can identify risk markers, it will help identify those for whom endoscopy is most needed.

The UK health system is adjudged to be the most efficient in the world (probably because of the swingeing cuts it's had to bear over the years) but exists to cater for the health of everyone not just those who can afford it.

The other hope is cheaper screening tools (like https://sites.google.com/site/barrettswessex/treatment/diagnosis/cytosponge - cytosponge ) will enable more testing to be done.

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http://www.barrettswessex.org.uk - www.barrettswessex.org.uk


Posted By: lizthebob
Date Posted: 03 Apr 2015 at 8:26pm
That's really interesting Chris. I have to admit that despite all my treatment I have no idea of my blood group.
When I was diagnosed I was contacted by Dr Rebecca Fitzgerald and asked if myself, my parents and my son would send blood samples and fill in a detailed questionnaire as part of a study. I never thought anymore about it but maybe it was to do with that study.
I still wonder about the gene side of it as my son was born with TOF/OA. His oesophagus ended in a pouch and the trachea had a fistula with the stomach. SO as a family oesophagus plays a big part!


Posted By: bluetobits
Date Posted: 10 Apr 2015 at 11:53am
Still awaiting results - Easter holidays no doubt delaying the process.

Thank you to all for taking the time out to offer advice/experiences - much appreciated.

Would still like to hear from someone who has been through the HALO process as I have had procedures before where the view from those who haven't had it lulled me into a false sense of security.

Still can't understand why the procedure for sedation is not 'nailed down' such that each patient is not given the correct sedation such that it is no different to being awake during it.
Surely follow up should highlight what dosage will be required on an individual basis such that you may have a bad time the fist time your scoped but on reporting this a different drug/dosage is applied second time.


Posted By: teacher man
Date Posted: 11 Apr 2015 at 6:16pm
I had it, no issues what so ever. None! Glad I did it.
I dint feel anything.


Posted By: jcombs99
Date Posted: 11 Apr 2015 at 6:29pm
B
You don't want Halo because you'll need 2 and 99% of the people can't afford it .PAY for a scope EVERY 12 months then NHS does the 2st year . IF it goes to LGD or HGD they will Halo it.
I paid $600 per Halo here OR $300 per scope .

Have a NICE(FR.)Day

HGD JEFF

Hi Teach


Posted By: Sandra W
Date Posted: 12 Apr 2015 at 2:13pm
Hi Bluetobits,
 
I had a 12cm HALO treatment for squamous cell dysplasia in March 2012, followed by a small EMR in 2013 to remove a residual area of abnormal cells.  Despite the waiting list horror stories that circulate, I was offered treatment session within 6 weeks of the condition being confirmed by biopsies.
 
For most scopes I have 3 or 4mg Midazolam plus 100mcg Fentanyl (opioid), which puts me out for the entire scope.  In fact, I'm usually in the land of nod before the injection's finished!  For the HALO treatment I was given 7mg Midazolam plus 125 mcg Fentanyl, and the consultant said he could give me a top-up injection during the procedure if necessary.
 
I slept for a total of 4 hours when I had the HALO, then had to wait another 4 hours before having anything by mouth.  Yes, I did have a lot of pain in my chest afterwards,  but Codeine and Sucralfate helped with that. 
 
Although many people do manage to start a soft diet within a day or two, I had so much pain I had to stick to lukewarm milky drinks for about 10 days afterwards.  When I sent a message about this to my consultant, he replied saying it was nothing to worry about and that very large ablations often do take longer to settle down.
 
Within 4 weeks I was back to a normal diet, and my follow-up scope confirmed that the treatment had worked well.  My consultant also explained that it is very common for people to need one or two follow-up treatments, although these tend to be much smaller than the first ablation. 
 
I was scoped roughly every 3 months over the following year, and a small residual area was detected in May 2013.  This was removed with EMR.  I got all clear at my last scope in June 2014, and I will be going back soon for my annual follow-up.
 
If you need HALO you willl be offered it on the NHS.  If you don't need it straight away, just make sure you take your meds and get follow-up scopes to monitor your condition so that treatment can be given at any time if necessary.
 
If you are offered HALO on the NHS, then go for it and get it done as soon as you can.
 
Good luck!
 
Sandra.
 
 
 
 


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E-mail: swilliams888@hotmail.co.uk


Posted By: bluetobits
Date Posted: 16 Apr 2015 at 12:15pm
Thanks Teacher & Sandra W for your responses.'

'squamous cell dysplasia'? EMR?

jcombs99

The last time I checked some three years ago the complete HALO treatment in the private sector (2-3 treatments + follow up scopes)was circa £5000 (8000$) so getting it free on the NHS is a blessing

and a scope is £1200 (1500$)

I suppose on reflection, your suggestion to have a private scope every other year such that you are scoped every year (one free on the NHS and the next one paid for)
is not a bad idea I shall give that serious thought.

thanks


Posted By: jcombs99
Date Posted: 16 Apr 2015 at 2:26pm
B
I bet that $1500 could be had $1000 as in CASH . Remember even if you did once to check up on your current doctor that would give me peace of mind . Tom Hanks wife Rita Wilson went to doctor he TOAD her no big deal she got second opinion CANCER then a few more opinions then they cut it out .

There a couple of clinics here that only take cash and their like 1/3 the cost . Ins. companies are like the Gov wasteful and lots of Red tape.
Good Luck

CHEERs


Posted By: Sandra W
Date Posted: 16 Apr 2015 at 5:13pm
Hi Bluetobits,
 
Yes, I had squamous cell dysplasia.  It's very different from Barrett's and is not necessarily caused by reflux.  In Barrett's, the normal oesophageal mucosa (squamous cells) is replaced by columnar mucosa (stomach / intestinal cells), and this change is caused by reflux.  In scd the oesophageal squamous cells develop pre-cancerous changes (dysplasia), and the condtion can progress to squamous cell cancer if not treated.
 
My consultant explained that scd carries a very high risk of development into cancer, much higher than normally happens with Barrett's.  He explained that scd risk is currently estimated at 35% over 3 years for low grade dysplasia and that this increases to at least 65% over 3 years if the dysplasia progresses to high grade.  For this reason he recommended that I have HALO to remove the abnormal cells to prevent them progresssing any further.
 
EMR is endoscopic mucosal resection.  My consultant explained that EMR can be used to remove abnormal mucosa if the area to be treated is small (about 2.5 cm or less), but HALO is required for larger areas. 
 
Although it's possible to have HALO 90 (smaller electrode) to remove small problem areas, since HALO appointment slots are usually limited it makes sensee to keep those slots for cases where (such as EMR) are not suitable.
 
I'm now booked to ahve my next follow-up scope on 29 June this year, and I'm really looking forward to getting an update on my progress.  Although I got all clear year, if the problem recurs I will be given more HALO or EMR depending on the size of the area(s) to be treated.
 
I'm very pleased I had the HALO, also the EMR.  Yes, I did have a lot of pain after HALO but I reckon it was worth it to get rid of the risk.  I'm also very pleased that I'm still having follow-ups so that any future problems can be identified and treated before they get out of hand.
 
All the best,
 
Sandra.
 
 


-------------
E-mail: swilliams888@hotmail.co.uk


Posted By: bluetobits
Date Posted: 11 May 2015 at 12:48pm
6 weeks now and no results from the hospital regarding biopsies - good news or bad?


Posted By: jcombs99
Date Posted: 11 May 2015 at 12:50pm
CALL or Email
Nothing like a little Reflux from worry maybe if they cut the NHS budget that will help things


Posted By: chrisrob
Date Posted: 11 May 2015 at 12:55pm
Path labs get quite busy at times. And it takes a while to peruse all the biopsies. They have to be set in petroleum wax and sliced into thin slices to be examined under a microscope.

If there was any suggestion of malignancy, the slides are prioritised to get the results quicker.

If you have had to wait a while, it's usually good news there was nothing suspect, but check your GP surgery hasn't received the results and not caught up on their paperwork and informed you and phone the endoscopy secretary if you receive no joy.

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http://www.barrettswessex.org.uk - www.barrettswessex.org.uk


Posted By: bluetobits
Date Posted: 11 May 2015 at 4:50pm
I was told two weeks at the conclusion of my scope in endoscopy - GP has received nothing - this happened last time - two years ago If I hadn't phoned the hospital I doubt I would have heard one way or another!!!!!
surely my hospital specialist would get the results first and make an appointment to see me if anything was untoward such that we could plan the next move?


Posted By: jcombs99
Date Posted: 11 May 2015 at 4:58pm
They forgot to call me and tell me I had HGD so ASK them.


Posted By: bluetobits
Date Posted: 16 Jun 2015 at 9:08am
It is now almost 3 months since I had my last scope & 16 biopsies due to segment length (8 cm)
After waiting 6 weeks for the results I have now made two phone calls to my specialists secretary at the hospital each two weeks apart with no response to date.

She mentioned my procedure was only surveillance!!! with an air of why are you bothering me there will be nothing wrong attitude.

I suspect they have lost my biopsy results and I will have to go through the procedure again

I am reluctant to complain but what can I now do to get an answer?


Posted By: chrisrob
Date Posted: 16 Jun 2015 at 10:05am
This seems unacceptable. It may have been "only" a surveillance but the report should have been sent, including biopsy results or there was no point in doing it.

Check your doctor's surgery hasn't received the report. (From experience, this can be where hold-ups occur as admin staff may routinely file reports in patient records when they haven't been reviewed.
If the answer's still negative get your doctor to request the results.
Endoscopy costs the NHS about £300 a time. I don't know how much the pathology costs are. Apart from anxiety it can cause the patient, it is a waste of time and money if records are not adequately utilised.

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http://www.barrettswessex.org.uk - www.barrettswessex.org.uk


Posted By: bluetobits
Date Posted: 16 Jun 2015 at 10:50am
I check with my surgery first - they tell me to contact the hospital (no one will do anything these days on the NHS they all have slopey shoulders and pass on a job)

so it is now approaching 3 months and nothing.

£300 a time!!!! the last time I had one privately it was £1250 + VAT with no biopsies


Posted By: bluetobits
Date Posted: 16 Jun 2015 at 4:52pm
You couldn't make it up - my specialists secretary has left a message on my phone - the doctor has your biopsy results but he's on holiday for the next two weeks so there's nothing she can do!!!!

so heaven forbid anything happens to him I can forget it - NHS eh

Any other industry would have cover in place.


Posted By: Sandra W
Date Posted: 16 Jun 2015 at 5:39pm
Hi, 
 
You can call and ask the secretary to fax the biopsy report to your GP, then collect a copy from the surgery or see your GP to discuss.  I do this whenever I have biopsies.
 
Meanwhile, I have no problem believing "you couldn't make it up"!  Here's what's happened to me recently - and it's not the first blunder I've had to put up with, either!
 
When I attended the clinic in March, the consultant put in a form for my follow-up scope which is due now (June). Not long afterwards, I called to book the appt and was given Monday, 29 June at 10am. As all my previous scopes had been on Wednesday mornings, I mentioned this but was told that this time it would be on a Monday. The booking was confirmed, and I was looking forward getting the results.
 
Last week I got a letter from the hospital telling me that my appt had been rescheduled for Wednesday, 17 June at 9am. As it wasn't possible for me to get time off at such short notice, I called the hospital to let them know. When I asked why my appt had been changed, I was told the booking had been a mistake as the consultant could only do this procedure on a Wednesday morning.
 
So, the scope's due and there are no alternative appts available and I'll probabaly have to wait a few months now. It's not the first time they've messed up like this. On one occasion I queried a booking several times but nobody checked it out and got back to me. The result was that I turned up only to be sent home again because my appt had been booked at the wrong hospital site.
Don't know where that hospital gets these bloody idiots, but I'm truly sick of them. Considering writing in a complaint, also asking my GP to arrange for me to continue my follow-up elsewhere.
 
Some of these appointment systems are a total disgrace.  I'm definitely going to make a written complaint about mine.
 
All the best,
 
Sandra.


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E-mail: swilliams888@hotmail.co.uk


Posted By: jcombs99
Date Posted: 16 Jun 2015 at 10:52pm
My Doctor and staff laugh when I tell them how great they are ..I just switched to Rabeprazole from Precvid works a lot better for me after 7 years on the later . I wonder if I should worry 5 bus. days after my scope and no phone call .Doc tells me I worry to much I know a few who didn't ..


Posted By: teacher man
Date Posted: 17 Jun 2015 at 7:42pm
Hi Jeff,
What is rabeprozal ? What made you switch?
Also, can I cut my protonix in half?
Thinking of trying 20 mg vs 40.   Just thinking..........


Posted By: jcombs99
Date Posted: 17 Jun 2015 at 8:02pm
Read before Post . PPI works great for me ($12 for 90 days).I can sleep inverted now and I feel better 0 heartburn,0 reflux cough . I'm intermixed with Precvid for now .The other ones I tried are in the garbage .
ASK your Doc like I do mine said anything I want .I was coughing 3 weeks 24/7 and that means NO Travel or Scopes .
I'm going to get a TDAP shot at local CVC lots of unhealthy people coming here .


Posted By: chrisrob
Date Posted: 17 Jun 2015 at 10:18pm
Hi Teacherman,

There are many PPIs. Rabeprazole is just one of them as is Prevacid (US name) = lansoprazole.

https://sites.google.com/site/barrettswessex/treatment/drugs#TOC-Proton-Pump-Inhibitors-PPIs- - Click on this link for a list of the most commonly available with approximately equivalent doses.

In UK, guidance is usually to start with the cheapest (omeprazole) and work upwards(cost wise) if necessary, though all PPIs are as effective as each other in equivalent doses - just some patients tolerate one more than another.



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http://www.barrettswessex.org.uk - www.barrettswessex.org.uk


Posted By: jcombs99
Date Posted: 18 Jun 2015 at 12:23am
Teach
   Never look @ the cost IF it works that's it the last 2 drugs I was in the Restroom many times .Nice chart Chris my doc wasn't sure of the equal doses .

CHEERs


Posted By: Pyrrhonist
Date Posted: 18 Jun 2015 at 8:57am
> Also, can I cut my protonix in half? Thinking of trying 20 mg vs 40.


Chris has not answered that bit, so here goes:

Drugs, including PPIs, have a half-life. It's the time the body takes to reduce the level by 50%. So for Omeprazole, the half-life (for me) was about 2 1/3 hours. 40mG lasted 20 Hours. 20mG lasted about 17 2/3 hours, 10mG lasted about 15 1/3 hours.

That's where I hit a problem: 5mG did not work ... I had hit a threshold. The level of PPI in the blood has to rise high enough for it to work at all. 5mG did not do this - but I was unaware of this at the time of the experiment.

Half-life will depend on how well you absorb the drug, and on how well your liver clears it, so it's a bit variable.

Reducing dose may be effective: instead of one dose every 12 hours, a half dose every 8 hours may be sensible. So 7 am, 3 p.m, 11 p.m.

There is another effect probably confusing reduced doses and half-life: the PPI is metabolised in the liver and the liver can learn to metabolise drugs faster, so if you have been on a particular PPI or a long time, its half-life may have reduced.

When I finally stopped PPIs I was fairly certain that the 20mG dose I had last taken had worn off quicker than expected.

There is much on the www about drug half-life, particularly about PPI half-life, but I have found nothing about its reduction with time. However there general info about drug tolerance - liver metabolisation is one mechanism of tolerance.

So dosage and frequency is all bit experimental - and a lot depends on exactly how well you can recognise when the dose is wearing off.



-------------
Richard Torrens. - See my www site for my own experiences with Barrett's and reflux etc.


Posted By: chrisrob
Date Posted: 18 Jun 2015 at 1:58pm
Richard,

You may be able to help me.
I am writing a book, "Down With Acid", to be freely available when finished. It is presently being compiled using this website https://sites.google.com/site/downwithacid/ - DownWithAcid.org.uk

It is taking a while because, although I have most of the content, I am double checking references for each page to ensure I have all the latest information and research supporting the contents.

However, I am having difficulty finding useful material on studies into the efficacy of various complementary remedies. Since you are more of an expert in that field, I wonder if you are able to point me in the right direction to find supportive material for the use of any of the following:
    1    Turmeric
    2    Aloe Vera
    3    Slippery Elm
    4    Green Tea
    5    Apple Cider Vinegar
    6    Lemon Water
    7    Manuka honey
    8    Deglycerised Liquorice
    9    Kombucha
    10   Peppermint
    11   Marijuana
    12   Baking Soda
    13   Other remedies
to help me compile https://sites.google.com/site/downwithacid/home/acid/acid-remedies - this page on "Natural remedies"?                   

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http://www.barrettswessex.org.uk - www.barrettswessex.org.uk


Posted By: Sandra W
Date Posted: 18 Jun 2015 at 5:49pm
Hi Chris,
 
Well, I can't find time at the moment to google all that lot (LOL), but peppermint is definitely something to avoid if you have heartburn / reflux problems. 
 
Although peppermint relaxes gut muscles and can help with problems like IBS, this effect can also relax the LOS and cause even more reflux!
 
A real no-no, something to avoid!
 

http://www.everydayhealth.com/digestive-health/the-power-of-peppermint.aspx -

http://umm.edu/health/medical/altmed/herb/peppermint -

http://www.ibstales.com/peppermint-oil.htm -  

https://books.google.co.uk/books?id=iuLYBAAAQBAJ&pg=PA44&lpg=PA44&dq=peppermint+oil+makes+reflux+worse&source=bl&ots=hribUU71xN&sig=3a1oadhKWi31L04ZyREX6I455Co&hl=en&sa=X&ei=rfaCVZrjIYeY7gbWgoKACA&ved=0CEIQ6AEwBA#v=onepage&q=peppermint%20oil%20makes%20reflux%20worse&f=false - http://www.naturalnews.com/019756_heartburn_antacids.html -

 
Cheers,
 
Sandra.


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E-mail: swilliams888@hotmail.co.uk


Posted By: Pyrrhonist
Date Posted: 18 Jun 2015 at 6:01pm
Hullo Chris

I had a quick look at the site but I (still) take issue with a couple of your points:

> Oils and fats, however, do not mix with the acid and if they need to be
> broken down some bile may need to be released into the stomach via the
> pylorus.

Bile release is controlled by the sphincter choledochus (part of the sphincter of Oddi), under the stimulus of the hormone cholecystokinin (abbreviated to CCK).

So even the pylorus should not normally have bile present unless chyme is passing. There is simply no way that the pyloric sphincter alone can allow bile into the stomach. The medics cannot control bile, so they simply ignore it!


> the liquid chyme ... may still be acidic though may be partially
> neutralised by the bile it encounters in the duodenum.

Chyme is more likely than not to be acidic: the acid is neutralised by bicarbonates released from the pancreas, via the sphincter pancreaticus (another [part of the sphincter of Oddi).

These bicarbonates are effectively the other half of the proton pump. Generation of an acid always produces an alkali - overall neutrality must be preserved.


Cider vinegar
There is of course no way this can improve acid reflux. However I think it can affect the symptoms - if they are caused by bile!

I suffered horrible nocturnal bile reflux events, firstly when I dropped dosage to 5mG, then again when I finally stopped taking PPIs. I knew this was strong bile because I could taste it. Bile in the mouth (so probably elsewhere) is far, far more unpleasant than acid - and there is no way to neutralise it. I tried sodium bicarbonate. No effect at all. I tried vinegar. No immediate effect - but it did appear to make the bile wear off quicker. I believe that acid in the pylorus switches off bile release from the sphincter choledochus.

So there may be some truth in this myth!



Herbs in general, I cannot really comment. There are many Stomachic ones and many Antibilious and Cholagogue herbs: search those terms on pfaf.org. Doubtless some of them will work for some people!

Then there are the mucilagic herbs: slippery elm, English elm, mallow leaves. They produce mucilage which can probably help by lining the oesophagus. So too, I suspect, would many seaweeds.

There are certainly foods that promote acid. The herbalist I consulted said that ordinary tea did so. I switched to red bush - this may have been helpful, but I cannot quantify its effect.

I also consulted a chiropractor. I agree that (however much the chiropractors believe so) manipulation cannot correct a hiatal hernia. However the chiropractor did say that my diaphragm was very tense. Spinal manipulation was done to relax my diaphragm. That may well have helped. But again I cannot quantify the effect. However it is known that many people with HH do not breathe deeply - that could be a symptom of such a tensed diaphragm.


One thing that is certain, though exceedingly difficult to control, is that the whole digestive system is controlled by the brain. Not only does the thought of food trigger saliva, but it also starts the digestive juices running. If you can control your response to the sight/smell/thought of food - that should have more effect that anything else. Which is why
http://www.primaryendpoint.com/pubs/Modulation_of_Gastric_Secretion.pdf
reports hypnosis had such an effect.





-------------
Richard Torrens. - See my www site for my own experiences with Barrett's and reflux etc.


Posted By: teacher man
Date Posted: 19 Jun 2015 at 12:14am
Dumb question here but I need to sort through this again.
On the equivalence document you gave a link to:
Losec 20 mg is NO stronger than protium 40 mg? They are equivalent?
20 is not equal to 40 so I am scratching my head hoping I get this straight. Also, nexium has two different doses. One is 20 and another is 40 mg. so ?? Which one is equivalent to 40 mg protium. . .?
I take the 40 mg protium. I've been happy with it. No reflux. Last endoscopy my O was as pink as a babies bum.
But due to chest pains and an over all concern for taking too much ppl for too long I would like to take less or take something different. Something that isn't as strong/effective as the 40 mg brand name Protonix.   
So, two questions.      . 40 mg protonix vs 20 mg losec. Same or protonix 40 mg is stronger?
Next, do you have any recommendations on a dosage and brand that would be less strength than 40 mg protonix?
Thanks all! Ps.....I spoke with my doc about marijuana. Clinical studies show it slows the whole digestive system so my doc says that would require more acid for longer period of time.
However, how it is consumed, strength, how and what it's made of (edibles) and the unknowns of marijuana studies leave it as an option for some. I live an area of California that is very supportive of its medicinal values and possibilities.   But, damed if we do and damed if we don't..........have a very relaxed afternoon everyone.   



Posted By: chrisrob
Date Posted: 19 Jun 2015 at 9:24am
Am trying to post a reply but keep getting an error.

Microsoft JET Database Engine error '80004005'
Not enough space on disk.
/forum/new_post.asp, line 871

I'll see if we can get this sorted out.

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http://www.barrettswessex.org.uk - www.barrettswessex.org.uk


Posted By: Pyrrhonist
Date Posted: 19 Jun 2015 at 12:37pm
I also received this message, on first posting. I tried again, later, and the server accepted the message, so it appears not to be a full disk!

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Richard Torrens. - See my www site for my own experiences with Barrett's and reflux etc.


Posted By: chrisrob
Date Posted: 19 Jun 2015 at 1:39pm
Our webmaster says he'll be onto it (and other backlogued tasks) this weekend.



And he's done it.

The missing post follows:

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http://www.barrettswessex.org.uk - www.barrettswessex.org.uk


Posted By: chrisrob
Date Posted: 21 Jun 2015 at 8:19am
The equivalence is approximate but the effect of 40mg Protonix is similar to 20mg Losec.
Whereas most gastroenterologists and researchers agree that 20mg Nexium is the comparable dose to 20mg Losec, 40mg Protonix etc., the manufacturer, Astra Zeneca, claims 40mg is equivalent to 20mg omeprazole.

Astra Zeneca released Nexium (esomeprazole) when their patent on Losec (omeprazole) expired meaning cheaper, generic versions of omeprazole were becoming available and they would lose revenue.
"There has been some controversy about AstraZeneca's behaviour in creating, patenting, and marketing of the drug. Esomeprazole's successful predecessor, omeprazole, is a mixture of two mirror-imaged molecules (esomeprazole which is the S-enantiomer, and R-omeprazole); critics said the company was trying to "evergreen" its omeprazole patent by patenting the pure esomeprazole and aggressively marketing to doctors that it is more effective than the mixture." (from Wikipedia)

There is no evidence to suggest the S-enantiomer is any better than the R-enantiomer or both taken in normal mix.

The testing of the expensive Nexium against other PPIs using the 20mg equivalence showed it to be no better results. However, Astra Zeneca sponsored trials equating 40mg Nexium with 20mg omeprazole (or equivalent other PPIs) unsurprisingly did show it was more effective. (as would a trial of 40mg omeprazole vs 20mg omeprazole!)
Now esomeprazole is out of patent, cheaper generic versions are becoming available and Astra Zeneca have had to adapt their marketting strategy. They have firmly established Nexium in US but hadn't made much impact in UK where PPIs were only available on prescription. So they managed to persuade the drugs licencing authorities that since other acid suppressants (eg ranitidine) were available over-the-counter and that Nexium was better than ranitidine, it should be available OTC in UK - which it now is with a very mixed reception from doctors some of whom think it's good that acid reflux sufferes can buy the product that may help them without having to see them for a prescription whilst others are worried they will be misused as has happened in US.

There is no regulation of PPIs bought OTC. Although the pack inserts provide instruction on how they should be used and for no more than 4 weeks, the US experience has shown that patients do not read and follow that advice. Instead, finding the drug helpful, patients continue on it and think nothing of taking extra doses or increasing dosage as they might have done previously using Tums (for example).
The unregulated use of PPIs resulted in overdosing over a period inducing hypochlorhydria resulting in malabsorption of essential elements and reduction in immunity from harmful bacteria. This in turn meant FDA had to issue warnings against misuse of PPIs resulting in hypomagnesaemia, bone loss and c-difficile etc.
When Prevacid (lansoprazole) went out of patent, its manufacturers, Takeda, followed Astra-Zeneca's example and produced Dexilant (dexlansoprazole), choosing to focus on producing the R-enantiomer of lansoprazole. They immediately claimed it was superior to lansoprazole but the high court in USA disagreed and they had to change their marketing. (I guess Takeda doesn't have the same financial clout as Astra Zeneca?)

As for marijuana, there is some evidence that some preparations of it are helpful for some medical conditions. I am presently reviewing much research on it from Cochrane, PubMed, Wiley, Eureka, etc for the Down With Acid book.
http://scienceblog.cancerresearchuk.org/2012/07/25/cannabis-cannabinoids-and-cancer-the-evidence-so-far/ - In the eantime, this cancer Research UK page will tell you more.

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http://www.barrettswessex.org.uk - www.barrettswessex.org.uk


Posted By: chrisrob
Date Posted: 21 Jun 2015 at 8:55am
Hi Richard,

The quote about release of bile into the stomach is from William Beaumont's incredible work of 1833. https://sites.google.com/site/downwithacid/home/references - (ref a-i on the references page)
I didn't say the bile was released by the pylorus only that that is the port of entry into the stomach. Remember the book is to be readily accessible as a layman's work other (albeit accurate) rather than a scientific text so I thought some simplification would help here.
As with the rest of the book, I'm having its contents checked for accuracy by various consultant gastroenterologists and surgeons.

Thanks for your views on the other complementary therapies. I agree with your assessment of the mucilagic herbs. I recently had a long discussion with a woman who's a director of a big Aloe Vera production company about that. (And those who claim “Big Pharma” are just out to make money, should also look at those peddling “alternative therapies”!)
Seaweeds do indeed work similarly. They are used in Gaviscon.

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http://www.barrettswessex.org.uk - www.barrettswessex.org.uk


Posted By: chrisrob
Date Posted: 21 Jun 2015 at 2:55pm
The Natural remedies page for reducing Acid for my "Down With Acid" book is now ready in its first draft https://sites.google.com/site/downwithacid/home/acid/acid-remedies#TOP - here.

Thanks to Sandra and Richard for their input.
I particularly liked The Supplement Handbook you pointed me towards, Sandra. I hadn't come across it before.

And I shall be including hypnosis along with chiropractic manipulation and acupuncture in the "Natural remedies" page of the Reflux section at a later date, Richard.

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http://www.barrettswessex.org.uk - www.barrettswessex.org.uk


Posted By: teacher man
Date Posted: 21 Jun 2015 at 10:32pm
I heard back from my doc, I can use over the counter Prevacid.
Or
Dexilant every other day. I believe it's a 60 mg time release. But I'm not interested.
The Prevacid is 20 mg vs the prescription version is 30 mg.
the 30 mg is equivalent to my current 40 mg protonix.
So in actuality I would be lowering the acid suprretion by 33% or effectiveness, side effects.
Food for thought..................thx




Posted By: teacher man
Date Posted: 21 Jun 2015 at 10:38pm
Hi Chris, do you have a section on fiber? This was a huge bennifit to my healing.   "Soaks up the acid"
Also, probiotics. But not simply any old probiotic. People have to try different ones to see what works best. But, in my experience ultimate Flora 50 billion works miracles for myself. others don't do much for me.   


Posted By: jcombs99
Date Posted: 21 Jun 2015 at 10:42pm
Teach
Prevacid OTC is 15mg like $.60 each and 30mg per doctor order only .I have like a 1,000 15mg lansoprazole .. Dex didn't work for me I think time released is rubbish . you watch like me so it's a waste of $$.


Posted By: chrisrob
Date Posted: 22 Jun 2015 at 7:53am
Hi Teach,

Thanks for the suggestion. The book's getting bigger every day. I may add your suggestion though not sure where to stop.

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http://www.barrettswessex.org.uk - www.barrettswessex.org.uk


Posted By: jcombs99
Date Posted: 22 Jun 2015 at 11:59am
Don't stop growing make it an Ebook when your done put it on Ebay for $.99 you will sell 100K ,then do a book tour.Then a couple of years from now update and resell .


Posted By: Pyrrhonist
Date Posted: 22 Jun 2015 at 2:59pm
> do you have a section on fiber

A good diet is paramount!

Firstly to keep your weight down. A slim build is important. I find that if my BMI exceds about 22 I start to get problems. Possibly by way of visceral fat pressing on the stomach.

But acid production is triggered by fats and proteins. A high-vegetable (therefore high fibre) diet produces less acid and speeds up digestive transit. Eating foods which stay less time in the stomach is indicated.

This is all very much experimental: you need to find out for yourself what works best for you.

-------------
Richard Torrens. - See my www site for my own experiences with Barrett's and reflux etc.


Posted By: chrisrob
Date Posted: 23 Jun 2015 at 8:14am
We seem to have hijacked the thread on HALO treatment to discuss the contents of the
https://sites.google.com/site/downwithacid/ - Down With Acid book .

The intention of the book is to answer most of the questions I meet every day, from talking to people, phone calls, emails and online forums (like this) and facebook groups as far as possible in layman's terms. I hope I am providing authoritative information (and am having it checked by consultant gastroenterologists, surgeons and researchers), providing the pros and cons where applicable for treatments etc.

I have already been "attacked" by advocates of LINX who feel I should be doing more to promote it and Stretta who feel I should be doing more to promote it. And the anti-drugs/"natural"/alternative therapy lobby who feel I should be doing more to promote their message and be condemning drugs. My hardest job is in attempting to keep it factual and balanced.

The book is to be totally free. It should be freely downloadable and printed copies may only be sold at cost. This is to counter the snake-oil charlatans who will sell you their secret on http://www.howicuredmybarrettsesophagus.com/ - "How I cured my Barrett's" if you are prepared to pay $29.99 for a pdf download.

(If any profits are ever made or donations towards the work received, they are all to go to Barrett's Wessex for their work in attempting to "reduce the number of deaths to oesophageal cancer through raising awareness of its predominant pre-cancerous lesion, Barrett's Oesophagus in Southampton, Wessex and beyond.")

I do hope to get the first edition of the book completed in the next couple of months but will keep the website going, adding to it frequently and making newer editions of the book available as appropriate.

I welcome any suggestions for inclusion. I am after scientifically supported evidence rather than anecdotes but if it is thought helpful, I can possibly add some patient stories and experiences if anyone wishes to send them to me.

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http://www.barrettswessex.org.uk - www.barrettswessex.org.uk


Posted By: jcombs99
Date Posted: 23 Jun 2015 at 12:24pm
Chris
    That's what the goofs don't understand ever single case is different .It all comes down to when the drugs ect, doesn't work you have to try something so you pick it .If you choose the wrong one that's life and I guess the LINX is the current thing but nothing has the history of a Fundo .We will find out 10 years from now when they have to replace LINX just like the knee and hip replacements which lasted ONE year.
Lot's of people don't like Free advise neither do I .I like the $.99 charge then give it to BW ..

CHEERs


Posted By: chrisrob
Date Posted: 23 Jun 2015 at 1:21pm
I'm not worried by those who reject any views I may propound.

So many people are so set in their prejudices, they don't want to listen to reason. I guess there are still holocaust deniers.

Cancer Research UK recently produced this video - but received considerable backlash from the Cancer Conspiracy theorists. See the comments under the video https://www.facebook.com/cancerresearchuk/videos/10153536736919474/ - which may be viewed here.

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http://www.barrettswessex.org.uk - www.barrettswessex.org.uk


Posted By: jcombs99
Date Posted: 23 Jun 2015 at 1:33pm
That's the trouble with this stuff who do you believe ?The Clinton Foundation uses 90% of funding to pay their bills like their daughter $100K wages right out of college .Don't worry your Gov and the NHS is no better or worse then ours .However they do have a better PR department as in the Royals .


Posted By: teacher man
Date Posted: 23 Jun 2015 at 10:00pm
I made a mistake when I listened to my voicemail.
I was told I could switch to Pepcid not Prevacid
Pepcid is an h2
Interesting.......
Lots to think about........
Chris or anyone.......in the UK or outside of the U.S. is it common practice or becoming practice to use an h2 blocker if no symptoms are present?? Have you seen this gaining acceptance as of late?.
As I make this choice I am being led by my instinct. My instinct tells me what, why and how I got barretts.
I don't eat or binge eat like I used to. I was bad. Super bad with binging. Over the top
So, now that this has changed, my Esaphagus is pink again, and I've made some lifestyle changes I am led to believe that an h2 blocker may be an answer.
With that said, my diet is far from perfect. But it's pretty darn good.   
I have been ablated and don't have an HH.
It was small length. Super small so...............I will have to make a decision. But not today.
On another note, there was an interesting article out of the university of Southern California on fasting and cancer protection/ longevity.
It appears fasting for 5 days every three months may be SUPER good for us.
My original thought was ," how or should I take my ppi if I am fasting?"
Now, the study does allow for some nutrient intake each day ( I haven't found what and how much one eats for the study) but it's less than half of what one normally eats/drinks. Food for thought. Or not........lol
Have a nice day everyone.



Posted By: Pyrrhonist
Date Posted: 24 Jun 2015 at 9:14am
See
http://thefastdiet.co.uk/

This is a follow-up to a TV program done by Michael Moseley. The evidence he got while doing the show was very convincing.

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Richard Torrens. - See my www site for my own experiences with Barrett's and reflux etc.


Posted By: teacher man
Date Posted: 24 Jun 2015 at 4:41pm
Interesting thanks Py


Posted By: Suzy
Date Posted: 26 Jun 2015 at 5:59pm
Teacher Man

Saw you comment about H2 blockers. Not sure if it's common practice or becoming common practice to be using H2 blockers but I switched from Lansoprazole (ppi) to Ranitadine (H2 blocker) probably 18 months or so ago as I've had considerable problems with my spine crushing and osteoporosis. Whether any of this is due to ppi usage over the last 7 years no one's saying for sure but there's plenty of evidence out there to suggest there's a link. Anyway Osteoporsis consultant immediately told me to stop ppi's and switch to H2. Gastro consultant without confirming a link apologised for what had happened and agreed H2 would be a better option, GP not happy about the switch but I decided I couldn't risk any further deterioration in the spine. I do now have serious problems.

For me personally the H2 is not as effective as the ppi as I do have to resort to Gaviscon or the odd Rennies most days even though I am very careful with what I eat. I take 300mg at night. Could be if I took 150mg morning and 150mg at night it would work better. I'm thinking of trying that. My next scope is Oct. this year which will be the first one since switching to the H2 so it will be interesting to see that state of things. I also find there's fewer side effects on H2 than ppi which can only be a good thing.

If you've got everything under control as you appear to have switching to an H2 shouldn't be a problem. Let us know what you decide to do and how you get on.

All the best
Suzy    


Posted By: Sandra W
Date Posted: 27 Jun 2015 at 10:01am
Hi Chris,
 
Just seen your earlier post.  Sorry I didn't see it sooner it but I don't get on the site much during the week.
 
Pleased you found the Supplement Handbook link useful, and I hope the book is going well.
 
I'm off to St Thomas's again on 6 & 7 July for manometry and pH tests as medication assessment.  Hoping for a suitable result to get a referral for surgery, so keeping my fingers crossed!
 
Meanwhile, I'm still waiting for an appointment for my HALO and EMR follow-up scope.  It's due now and I was meant to have it done on Monday (29 June), but the appt was misbooked as the consultant can only do this procedure on Wednesday mornings and he's now fully booked until August!  LOL!
 
Never mind, I've booked 2 days annual leave so at least I get a holiday out of the blunder.  Might be lucky to get an earlier appt if anyone cancels in July.
 
All the best,
 
Sandra.
 


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E-mail: swilliams888@hotmail.co.uk


Posted By: Pyrrhonist
Date Posted: 27 Jun 2015 at 11:18am
Suzy

My wife was diagnosed with osteopenia - the stage before osteopososis. She is on a course of alendronic acid.

The other thing you should discuss with your doctor is calcium citrate: there are papers available via google scholar which prove that this has better bio-availability than calcium carbonate.
http://scholar.google.co.uk/

The carbonate reacts with stomach acid to produce calcium chloride. Without the acid you cannot use the calcium carbonate. Calcium chloride is much more soluble than carbonate - which is why te body can absorb it. However the citrate is even more soluble than the chloride - which is hy it's better. Also calcium citrate should not require stomach acid for it to be useful.

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Richard Torrens. - See my www site for my own experiences with Barrett's and reflux etc.


Posted By: Suzy
Date Posted: 27 Jun 2015 at 2:38pm
Pyrrhonist

It's all under control thanks. I'm already on calcium citrate and extra Vitamin D to help absorb the calcium. Also on bisphosphonate - Zoldronic Acid - which I currently have annually intravenously because main side effect is acid reflux leading to Barrett's! As I've already got Barrett's this is the best way of avoiding any more acid in the system. All seems like a vicious circle some times. I hope your wife has been made aware of this side effect and that she stays upright for half an hour after taking her alendronic acid, although she would probably be well aware if she was getting reflux symptoms.

In my neck of the woods they won't give you your bisphosphonate unless you bring your bottle of Calcium and Vitamin D tablets with you to hospital to prove you are taking them as they feel there is no point in a bisphosphonate unless you are taking adequate calcium and vit D. Does your wife take extra vit D? If not she may want to enquire about this with her GP or specialist. Just a thought.

Suzy



Posted By: Pyrrhonist
Date Posted: 27 Jun 2015 at 5:59pm
Suzy

Wife is an ex-nurse, who is well up on how to work doctors, so everything you say is being done.

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Richard Torrens. - See my www site for my own experiences with Barrett's and reflux etc.


Posted By: bluetobits
Date Posted: 29 Jun 2015 at 10:28am
Wow - we have gone off at a tangent but information is knowledge.

GOT MY RESULTS LAST SATURDAY - 13 weeks after the scope/biopsies (16 in total due to 8cm length)

8 cm Barrett's - Intestinal Something(forgot what it said) but No dysplasia or worrying observations - and no apology for the delay.

Results eventually came from the Dr who did the scope/biopsies and not my consultant who has now made an appointment to see me in October - so I will have an opportunity to discuss the failings/findings and put some of the following points to him:-
1. Has the length of Barrett's increased since my last scope?
2. If so why?
3. Am I taking enough acid suppression at 40mg a day?
4. I know it's a needle in a haystack exercise but if I have the HALO treatment will it not come back as the root cause (a hiatus Hernia) will still be there and acid reflux will still occur?
5.I have had NO acid reflux symptoms since I started taking omerpaerazorole 40mg a day 10 years ago do I need to do something else to stop 8cm becoming 12


Posted By: chrisrob
Date Posted: 29 Jun 2015 at 11:52am
Hi Blue,

I know path labs get really snowed under at times and they'll prioritise any samples that have been marked as suspicious.
8cm is a fair length. Do you know what it was recorded as previously? Bur measurement of the length is not a precise science. The endoscopist has to use markings that are usually 2 cm apart on the outside of the endoscope itself to judge the position of the top and bottom extremities of what appears to be the suspect area - with no defined line demarcating the boundaries and it not being a uniform ring all round. Also measurements taken whilst the scope is being inserted will give smaller readings than when the scope is extracted (due to the scope pushing or pulling on the walls of the oesophagus).

40mg omeprazole is considered the high dose and if it is being effective, there shouldn't be any need to change it. The normal maintenance dose is actually 20mg. If it is decided to raise the dose to 80mg, you'll run an increased risk of hypochlorhydria which could deplete you of essential minerals and vitamins and render you more prone to infections.

Since there's no dysplasia, ablation therapy wouldn't normally be available on NHS. And as you say, there's nothing to prevent Barrett's reforming.
The normal advice would be to remain as you are and continue having 2-yearly scopes. If it does start to show signs of dysplasia, that would be the time to consider ablation.

A paper published in Gut (the BMJ journal) last Thursday found "The annual cancer transition rates for patients with long, short and ultra-short Barrett's oesophagus were 0.22%, 0.03% and 0.01%, respectively. To detect one cancer, 450 patients with long-segment Barrett's oesophagus would need to undergo annual surveillance endoscopy; in short segment and ultra-short segment, the corresponding numbers of patients would be 3440 and 12 364." so in your case, you have a near 0.5% chance of the scope revealing progression to cancer.

If you don't wish to remain on PPIs and want the hiatus hernia repaired, you may wish to discuss the option of a fundoplication.
https://sites.google.com/site/downwithacid/home/appendices - See the NICE option grid here if you wish to consider that possibility.

All the best
Chris

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http://www.barrettswessex.org.uk - www.barrettswessex.org.uk



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