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peterc
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Quote peterc Replybullet Topic: Hallo
    Posted: 08†Dec†2012 at 2:35pm

I had my annual endoscopy yesterday and my consultant mentioned Halo. So I started Googling for information on Halo and came across this forum. Looks a great place to share experiences so here I am.

My story: I was diagnosed with Barretts in 2000. At a routine checkup I happened to mention to a doctor in passing that I had a lot of acid indigestion and was forever chewing Rennies and was immediately booked to see a consultant. I then started a regime of a daily Pantoprazole (later changed to Lanzoprazole) and annual endoscopies.

In 2005 my consultant found what he called dysplasia and in 2006 he found a cancerous nodule. His first thought was to chop out the oesophagus but a scan discovered a patch on the liver also. It was therefore decided I should have chemotherapy not surgery. I assume the logic is that itís only worth removing the oesophagus if itís the only place you have the cancer.

I had six sessions of chemotherapy at roughly monthly intervals followed by two weeks of daily sessions of radiotherapy to the oesophagus. Not a fun time but I wonít bore you with the details unless you really want to know. At the end of six months I was a physical wreck but all clear of cancer. It took me nearly a year to feel fit and healthy again but I have been fine ever since. Iím still taking daily Lanzoprazole and having an annual checkup and Iím still all clear. Last year my Barretts was described as C1 M3 by the Prague Criteria. It will be interesting to see the results from yesterday for comparison.

Going back to the question of Halo, this was the first I had heard that there was actually a treatment that can get rid of the Barretts condition and return the oesophagus lining to normal. Having already had cancer in the oesophagus there is apparently a 1 in 3 chance that I could get it again. Halo could reduce that to 1 in 50. So you can imagine I am getting a bit excited about this. A Halo centre is being set up in my local hospital and will be up and running next April. It would seem that Halo is considered particularly appropriate for my situation so I am hoping my consultant will put me forward. I will be seeing him again in 2 weeks so I shall find out more.


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jcombs99
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Quote jcombs99 Replybullet Posted: 08†Dec†2012 at 2:55pm
Welcome aboard !!! you have been down a very ruff road .My buddy had liver cancer and passed on .One of the reasons was they did a Ct scan but didn't look at it for FOUR months then played with it for a few more then started chemo .
Had 5x halos FIND the doctor who has done the most then travel to him like I did or at least a hundred halos.

   Maybe set up a link like Chris to show what tests, treatments you have done .That would be very helpfull to people and you would've to repete yourself ..
The best person I ever met on the internet beat cancer 3x and hes the best non doctor in the US (RALPH) ..

HGD Jeff
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chrisrob
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Quote chrisrob Replybullet Posted: 08†Dec†2012 at 5:52pm
Hi Peter and welcome.

What an inspirational story.

I do meet with some oesophageal cancer survivors occasionally. Although the morbidity rate is very high (85% I believe), it is stories like yours and Lixthebob on this forum that give hope to others whilst also alerting us all to the need for early detection.

I do hope you can receive HALO ablation therapy. We bought a machine for Southampton that has been used on a number with HGD. One of them wrote an inspiring account saying he reckons he owes his life to that HALO device.

I don't know what part of the country you're in, but a list of hospitals currently offering HALO treatment may be found here.

If you wish to write your story, I'm sure we could include it in a newsletter or a link from the forum for anyone interested.

All the best

Chris
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peterc
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Quote peterc Replybullet Posted: 10†Dec†2012 at 12:24pm
Hi.

Thanks for the responses.

Happy to write my story. I did write something fot the OPA but they didn't seem very interested - that forum seems more for those who have had the surgery. I'll dust that off and see if I can improve on it.

Could also write up something on treatments. When you say set up a link I'm not sure where you mean I would actually post the information to link to.

I live in Watford. The consultant who does my annual endoscopy is setting up a Halo unit at Watford General - as I know him and trust him I will be happy to go to him although it will be a new unit.

Peter
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chrisrob
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Quote chrisrob Replybullet Posted: 10†Dec†2012 at 3:13pm
That's fine, Peter.
If you want to send anything to: chairman@barrettswessex.org.uk, I can guarantee it space on Barrett's Wessex site immediately (and link to it from this forum) and, eventually, on this site.

I guess Mark Fullard is your consultant? Whereas I don't know him, I have viewed a Power Point presentation he has made and he seems to be well in-tune with latest procedures. (I'll look out for him next time I'm at a symposium he may be attending.)

All the best

Chris
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chrisrob
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Quote chrisrob Replybullet Posted: 10†Dec†2012 at 3:31pm
Regarding OPA. Did you send them something for their main site, OPA.org.uk or post a blog on their Health Unlocked page?

We work closely with OPA. I am on the same committee "Action Against Heartburn" and would have thought they'd be interested in patients' stories.
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peterc
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Quote peterc Replybullet Posted: 10†Dec†2012 at 3:43pm
Chris

My consultant is Anthony Leahy.

The write up I sent the OPA I think I emailed to their newsletter email address. I sent it back in the Spring so long since deleted the sent email so I'm not sure. maybe it just got lost somewhere along the line. Anyway see what you think when I send it to you. May take a week or so to sort out as we are busy with Christmas stuff at the moment.

Peter

Peter

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peterc
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Quote peterc Replybullet Posted: 16†Apr†2013 at 9:50pm
Hi. I had my first Halo treatment yesterday at Watford General. They gave me a strong sedative so the procedure wasn't too unpleasant. It's taken a while to shake off the effects of the sedative though, still not feeling quite back to normal. I was on liquids for 24 hours, now on soft foods for 7 days. Food seems to be going down OK but slowly! I think I'm going to lose some weight this week (which won't do me any harm). I'm on a range of mediaction for a fortnight which as far as I can see is designed to absolutely minimise the risk of acid reflux while the oesophagus is healing.
Next appointment in 2 months I'm told.
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jcombs99
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Quote jcombs99 Replybullet Posted: 16†Apr†2013 at 10:06pm
Peter
   Glad you got Halo and it is a great club to join .. You have been down a very rough road and caution is the name of the game . Liquids for the first week then Soft foods BEeeee careful , be hard on the PPI's !!! If your getting stomach acid on your RAW Haloed tissue it may never heal and it takes 4 weeks to heal ..

Had 5 Halos will need the 6th one day !!

Be perfect make your Doctor successful ..

HGD JEFF   

If you need painkillers TAKE them..
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chrisrob
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Quote chrisrob Replybullet Posted: 16†Apr†2013 at 11:12pm
Great news re your treatment, Peter.

Hope all goes well and your oesophagus is as good as new soon.

All the best

Chris
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