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BMcD
New Member


Date Joined Aug 2009
Total Posts : 18
   Posted 8/19/2009 9:06 AM (GMT -6)   

Ok all,  I have been back and forth through the internet to figure out my best chances of not allowing Barretts to progress to cancer.  Here is what I have come up with for my life plan.

 

Lifestyle changes I plan on doing:

 

Lose weight.  Already doing this anyway.  Went from 190 to 163 and plan on leveling out in the mid 150’s somewhere.  This puts me in a comfortable “normal” level in the BMI chart.  I’m somewhere between 5’9 and 5’10 in height.

 

Exercise – 30+ minutes/day  5 days/week

 

Stopped Smoking completely.  Used to smoke infrequently (socially)

 

Vitamins/Suppliments –

Multivitamin with extra amount for diabetics (I am/was pre-diabetic)  This has a bunch of extra Vitamin C and E in particular, which there have been studies showing that to help with esophageal cancer.

Omega 3 in fish oil.  1.5 g / day.

 

 

 

Eat Healthy:

Have cut out Fast food for 2 months so I will continue to eat that very infrequently.

Candy and Fried foods the same thing.

Stopped drinking coffee

Stopped drinking all soda diet or otherwise (staying away from artificial sweeteners as well)

96 or more oz of water/day

One or two Salads/day.  More raw vegetables in general

1.5 cups or more of Black Raspberries/day

2-3 cups of Green Tea Per day

1 glass of wine/day a few times a week

Lower carb intake

 

 

Drinking – I will cut down on this but not stop.  I have not seen any good direct evidence that states quantity of alcohol is a factor in adenocarcinoma.

 

Asprin/day – I have read studies showing this has helped prevent esophageal cancer.  I have also read about possible side effects.  I will discuss this with a doctor or two before undertaking this.

 

 

Surgury/Medicine:

 

Will most likely go ahead with Nissen Fundiplication to prevent reflux.

Will insist on continuing on at least one of the two protonix generics/ day I am taking now.

Will look for someone to perform the Halo 360 abalation procedure on the Barretts with no dysplasia I have currently.  Not sure if I will be able to get insurance to cover this but I hope they will.

 

 

Anyway would love to hear others thoughts on these ideas and maybe some others your doing.  I am not one to give up on anything and am extreamly competitive.  If its a fight cancer wants, its a fight cancers gonna get.

 

 

Ben

Post Edited (BMcD) : 8/19/2009 8:47:13 AM (GMT-6)


KGood
Regular Member


Date Joined May 2003
Total Posts : 81
   Posted 8/19/2009 10:49 AM (GMT -6)   
Hi, Ben,
I applaud you for all of the measures you are taking to protect your health and prevent further illness.  It sounds like all of the things you are doing will truly be helpful to you.
 
I have only one thing to add, and that is Turmeric.  Studies have shown that it is helpful in fighting and/or preventing cancer.  I am not a doctor or a nutritionist, though; just someone who does a lot of research on vitamins, herbs, and minerals in an attempt to stay healthy and ward off illness and disease.  So I would caution you that I am not an expert; and you will want to be sure Turmeric would not interfere with any medications you may be on.  But if taking it didn't interfere with anything, it is just a suggestion of something you may want to look into.
~Karen
Diagnosed with: seizure disorder in 1962; seizure-free since 1969, anorexia from 1968-1969; IBS-D in 1996, Mild depression, anxiety, & OCD in 2000, (probably had since childhood); PMDD in 2001, Dysfunctional tear syndrome in 2009; Meds: Phenobarbitol, Paxil, Allegra; Supplements: Citrucel tablets; many vitamins, minerals & herbs - too many to list here
 
 
 
 


stkitt
Elite Member


Date Joined Apr 2007
Total Posts : 32602
   Posted 8/19/2009 11:27 AM (GMT -6)   
Congratulations on being proactive in making a plan for yourself.  It looks like a good plan to me.  It is well researched and thought out.
I wish you the best with this change in your lifestyle.  Please do keep us posted on how you are doing with your plan.
 
Take care and good luck on the new you.
 
Kitt

 
 

Kitt,
Moderator: Osteoarthritis, GERD/Heartburn
Anxiety/Panic, & Depression
*~*
http://www.healingwell.com/donate *~*
"When you find peace within yourself, you become the kind of person who can live at peace with others."
Not a mental health professional of any kind


couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 8/19/2009 5:31 PM (GMT -6)   
Wonderful plan! Keep it up!

Joy

Uncle Leo
Regular Member


Date Joined Jul 2009
Total Posts : 32
   Posted 8/19/2009 9:27 PM (GMT -6)   

Hi Ben,

Best of luck with your plan!  I know it will be hard at first, but there's nothing there that's not doable!

My one piece of advice I would give is to eat your vegetables cooked, rather than raw.  It's usually recommended that way by Traditional Chinese Diet, as it is a bit easier to digest.  Doesn't mean you can't have a salads or ever have raw veggies, but maybe try to steam your veggies as often as you can! Steaming cooks the veggies lightly, so they retain their nutrients.

Best of luck!

   Uncle Leo
Spasms are bad...


griffdawg
Regular Member


Date Joined May 2009
Total Posts : 247
   Posted 8/19/2009 9:31 PM (GMT -6)   
wonderful plan my friend, best of luck!!

amo
Regular Member


Date Joined Sep 2008
Total Posts : 70
   Posted 8/20/2009 11:56 AM (GMT -6)   
:-)  Ben,
 
     I have a 24 year old son named Ben. Your whole program sounds awesome. It would be a great plan for everyone to follow. I just wanted to share with you my experience so far to maybe give you hope. I was diagnosed with Barrettes with no dysplasia last August. I had a LES that was wide open all the time. I had the Nissen fundoplication surgery. I have not had any acid reflux since. I just had my endoscopy last week to biopsy the Barrettes. He could not find it anymore and the pictures of my esophagus looked like someone elses, a total difference from last August. I have not received the results of my biopsies yet, but just knowing my esophagus looks better is such a wonderful feeling. I hope that the wrap surgery will help you as well. Prayers and best wishes.
 
amo

BMcD
New Member


Date Joined Aug 2009
Total Posts : 18
   Posted 8/20/2009 9:32 PM (GMT -6)   
Well today I had a second opinion that threw me for a loop. In my area (Kansas City) I found a doctor that has written quite a few papers and research on Barretts. I reached out to him a few days ago and he called me back today. He asked me what I was diagnosed with. I said they found intestinal metaplasia (barretts) with no dysplasia. He asked how long the barretts was. I said I was not sure, but when I showed the pictures to the general surgeon he said he thought it was about 2-3 cm. He then said what are my symptoms. I said I had severe pain in my chest a couple times with minor pain in the same area daily. After I got on 2 PPI's daily the pain has all but gone away. I would say once a day for 2 or 3 seconds, If I think about it I will notice a very minor dull pain in that area, which subsides immediately.

After this he said, so you don't have pain, your barrets is tiny and has no dysplasia, and your considering two different procedures, both of which has possible permanent side effects. You have a higher chance of dying from heart disease then Barretts progressing to cancer so why would you consider this. His recommendation was to not do ANY surgery, stay on the pills, and have an endoscopy once every couple year. If it progresses to low grade, then I can consider the Halo 360 and/or Nissen procedure.

Quite a difference from my first surgeon who said, you are a good candidate for Nissen and should consider going ahead with it to prevent Barretts from progressing. This guys says there is no evidence that even if the Nissen did work, it would stop Barrets from progressing anyway. When I said I am worried about other things from refluxing (bile) he said PPI's should take care of all of that.

Anyway, I think I need another opinion. The one thing I do know, is I can always get the surgeries, but if they go wrong, I can never go back. So this becomes a very difficult decision. Regardless everything outside of the surgery in my life plan i will continue regardless. I am now on the fence again with regard to surgery...

Amo, were you in pain even after PPI's or did you do your surgery for preventative measures only?

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 8/21/2009 5:50 PM (GMT -6)   
I'm in misery from the coughing that's why I'm doing it.

Joy

amo
Regular Member


Date Joined Sep 2008
Total Posts : 70
   Posted 8/23/2009 3:21 PM (GMT -6)   
Ben,
 
Yes, I was still in pain and had severe reflux even on high does of PPIs. I had GERD for 17 years and tryed all the meds, they would help for a while but the symptoms would return. I felt I had no other option. It is a very big decision. I did find out from my gasteroenterologist that for the rest of my life I can not lift. He said no lifting and no throwing up. I thought it would all grow together and the lifting and throwing up was just for a time. Keep reading this blog and reading reliable sites and I am sure you will make the best decision for you.
 
amo

mariex800
Regular Member


Date Joined Mar 2009
Total Posts : 171
   Posted 8/31/2009 9:08 AM (GMT -6)   
Hi Ben,
I like your list - it is very nice.
I also have bad reflux - burn throat constantly and no ppi works for me.
I am apt for surgery.
 
Ben - have your have any test done -like 24PH /Manometry, etc?
I have not had the surgery.
My dr recommand me surgery - cause I also have barret.
He say if reflux stop, very likely barret will go away own it own - heal itself.
In my case, he told me that med (PPI) doesn't work and will not stop reflux.
He say surgery may help. I do a little research regarding to bile reflux.
 
PPI will not stop bile reflux. Carafate and some other will help with bile reflux.
Taking too much PPI in the long run, can cause further damage to esphoguz due to bile reflux.
Our stomach have acid and also bile. Too much PPI to stop Acid in the long run will leave bile pile up in our stomach.
With too much bile in the stomach, it will do more damage to stomach and esphoguz. Bile by itselt can cause much damage to our stomach and esphoguz. With bile reflux, barret will develop and can cause more damage over time.
When acid and bile mix together, it is harmless, but when acid is not present, bile will cause many damage...This is where barret and cancer, etc.
I also experienced bile reflux.
Thanks.
Marie

BMcD
New Member


Date Joined Aug 2009
Total Posts : 18
   Posted 10/7/2009 9:39 PM (GMT -6)   
Hi all,
 
Just an update on me.  I have followed my life plan to a tee and feel great.  I am am down to 156 and looking better then I ever have.  The PPI's have stopped 99% of the chest pain I have had and I have decided to forgo the Nissen for now.  I do have an appointment to get the Halo Abalation procedure on October 30th.  I am very excited to be Barretts free!  My plan will be to get my scopes every couple years to see if Barretts returns.  If it does, or if symptoms get bad in spite of the PPI's I will reconsider the Nissen.  Outside of that, I am going to stay healthy and enjoy life to the fullest!

stkitt
Elite Member


Date Joined Apr 2007
Total Posts : 32602
   Posted 10/8/2009 7:15 AM (GMT -6)   
Ben,
 
It is really great to hear from you and to know you are right on track with your plan.  I am glad to hear how well you are doing and coming here and sharing your accomplishments with the members is a good thing.
 
We need to hear the success stories and we care.  Good job and do keep on posting when you feel you would like to.
 
Health and Happiness,
 
Kitt
 

Kitt,
Moderator: Osteoarthritis, GERD/Heartburn
Anxiety/Panic
*~*
http://www.healingwell.com/donate *~*
"When you find peace within yourself, you become the kind of person who can live at peace with others."
"I am not a mental health professional, nor do I play one on TV, I just kind of talk like one!"



stkitt
Elite Member


Date Joined Apr 2007
Total Posts : 32602
   Posted 10/9/2009 11:17 AM (GMT -6)   

Hey Ben, I am still liking your plan and you have my support.

You are using good judgement.  Remember to  never  rely completely on information or opinions exchanged via the forums or chat rooms to replace necessary, personal consultation(s) with qualified health or medical professionals to meet your individual health or medical needs.  Remember that what's right or has worked for one person may not be what's right for you.  :-)

We are all here sharing what has worked for us or what decisions we have made and we respect your choices.

Take care and know you are family here.

Hugs

Kitt


 

Kitt,
Moderator: Osteoarthritis, GERD/Heartburn
Anxiety/Panic
*~*
http://www.healingwell.com/donate *~*
"When you find peace within yourself, you become the kind of person who can live at peace with others."
"I am not a mental health professional, nor do I play one on TV, I just kind of talk like one!"



BMcD
New Member


Date Joined Aug 2009
Total Posts : 18
   Posted 10/13/2009 9:00 PM (GMT -6)   
Thanks for the replies. Skunker thanks for the words of warning. Trust that if I did not feel completely comfortable with the doctor that will be doing my Halo I would not do it. He does about 5 or 6 a week and I feel is extremely qualified to do this for me. I have looked at all the risks from a statistical standpont and the benifits very closely. I really need to not have Barretts. Some people can look at the .5% cancer risk/year and be ok with it, actually any reasonable person should be. Personally for me, if there is a low risk way to potentially rid myself of this disease, then I need to do it. Its the only way Im going to sleep well at night.

theacidrefluxman
Veteran Member


Date Joined Oct 2009
Total Posts : 739
   Posted 10/13/2009 9:17 PM (GMT -6)   
skunker, may I ask, if you had the nissen at age 14 in 1994, has it held up through today in fine working order, or has it come undone as i understand it tends to?

BMcD
New Member


Date Joined Aug 2009
Total Posts : 18
   Posted 10/30/2009 9:07 PM (GMT -6)   
Had the Halo treatment this morning.  Doctor said it went great.  I had 1.5 cm Barretts and he believes most likely it will be gone when  I go back in two months for followup.  The pain today has been minor to moderate.  Swallowing hurts a bit in the area where the Barretts was and I have been pretty sleepy today.  Outside of that im doing great.  For those that may be considering going this route, I will keep you updated on the progress.  So far no regrets for sure.

Alcie
Veteran Member


Date Joined Oct 2009
Total Posts : 5028
   Posted 10/31/2009 8:31 AM (GMT -6)   
BMcD -
 
My prayers for great results with your procedure. 
 
You are getting great advice from the board.  I only add agreement (with Marie) that PPIs won't stop reflux, but they DO make it non-acid.  I had non-acid for 25 years and no Barrets.  Losing 20 lbs (over 2 years) DID make a little difference in my reflux.
 
Try to find your reflux triggers.  It could be just volume, but there could be specific food triggers, and they are not necessarily the commonly published ones!  I posted a list of foods I react to.  My allergist actually calls it an allergy.  Mine all have sulfite in common.  Yours could have the same thing or MSG or any of the so-called food allergies.  Keep a food journal!  Then do challenge testing to figure out which food in a meal was the culprit.
 
The only reason I had surgery was a vehicle wreck pushed my stomach into my chest and my LES wouldn't close at all.  I STILL have to watch my food triggers.  They are acquired allergies.  It's not an all-or-none thing, it's total quantity of the culprit with this sensitivity.
 
Good luck and keep us posted!
 
Alcie
 
 


stkitt
Elite Member


Date Joined Apr 2007
Total Posts : 32602
   Posted 10/31/2009 5:07 PM (GMT -6)   

Ben,

So glad to hear back from you and to know you had your Halo treatment and all is going well.  Please do keep us posted on your recovery.

I wish you peace,

Kitt


 

~~ Kitt ~~
Moderator: Osteoarthritis, GERD/Heartburn, &
Anxiety/Panic
*~* http://www.healingwell.com/donate *~*
"When you find peace within yourself, you become the kind of person who can live at peace with others."
"I am not a mental health professional, nor do I play one on TV, I just kind of talk like one!"



PAlady
Veteran Member


Date Joined Nov 2007
Total Posts : 6795
   Posted 11/11/2009 3:12 PM (GMT -6)   
Ben,
I spend most of my time on the chronic pain forum (for other issues!) but in June I had Barrett's esophagus with low dysplasia diagnosed, and then lost my insurance as my COBRA ended. I have some minimal insurance now that covers a few things, but have no idea if it will cover the HALO. Did your insurance cover it? I noticed you raised that question earlier.

Anyway, the insurance wasn't the main thing I intended to ask about. I am very interested in learning abou the HALO procedure, and your (or anyone's) response to it. I've pulled up some of the research and the ablation studies look very interesting re: Barrett's. I am nearly 60 years old, have not had chronc acid reflux problems until this past year. But I did have my gallbladder removed at age 19.

I've been on nexium 40mg/twice a day and that had seemed to be working until these past several days, and I'm trying to figure out what's going on. I didn't think I made any major changes to my diet or anything recently, but the burning in my throat/upper chest is returning. And I am noticing more nighttime symptoms, including waking up coughing. The cough is a new added symptom. I haven't yet raised my bed as I've got to figure otu how and get some help to do it as I live alone. I also have serious back and neck problems, so sleeping on a wedige isn't going to cut it for me.

Anyway, you seem to have done a lot of research so I'd like to follow your progress. I am starting with a new GI doctor at a more progressive local hospital on Nov. 24. I know I need another EGD done, hopefully before the end of the year (so my insurance limits will be used before Jan. 1). This doctor does do the HALO, but I haven't seen him yet so I don't even know if I'd be a candidate. With my insurance, I'm wondering about any clinical trials. I have to hunt those down, though.

I'll keep following this thread!

Thanks for sharing.

PaLady

BMcD
New Member


Date Joined Aug 2009
Total Posts : 18
   Posted 11/13/2009 2:58 PM (GMT -6)   

Hi there PALady,

 

Sorry to hear about your pain.  The funny thing about these decisions we make is that there are so many factors that go into what your plan is going to be.  If I had pain that was not controlled by PPI's, most likely I would have gone through with the Fundo.

 

Regarding Halo.  I had a great experience.  Very little pain afterwards which subsided after a couple days.  I was eating whatever I wanted the day after the procedure.  Now keep in mind I only had 1.5 cm of Barretts.  Had I had long segment the procedure would have burned more of the esophageal tissue and I’m sure I would have not been able to get back on my normal diet so quickly.

 

As far as you being a candidate for Halo.  Unless there are medical reasons to not do it, the fact that you have Barretts makes you a candidate, dysplasia or not.  With dysplasia it should be a no brainer.  Without dysplasia I can see somebody deciding not to do it, just not me.  The piece of mind you get from this is great and I would have made the same decision again a million times.

 

Insurance:  Mine covered it completely, your mileage may vary.  I had the doctor's nurse actually make a call and verify it for me before I signed up.

 

Bottom line:  once you have Barratts you have to go get scoped from time to time for the rest of your life.  My thoughts are when I go in for the scope I want my biggest fear to be "has the Barretts returned" and not "has the Barretts progressed to cancer"!

 

Good luck in your journey.

 

Ben

 

PAlady
Veteran Member


Date Joined Nov 2007
Total Posts : 6795
   Posted 11/13/2009 11:47 PM (GMT -6)   
Thanks, Ben!

Your last paragraph really hit home. I kind of knew from all my reading I would need some level of surveillance, but having the low grade dysplasia is very unnerving. If I can get rid of it, even for awhile, I want it out of me! On my June EGD the report stated short segment Barrett's.

Anyway, I hope to learn something soon. I am due for another EGD and I wonder if they would schedule a HALO procedure after I've only had one EGD, or if they'll want to do a second one. The limited insurance coverage I have will cover surgical procedures, although I don't know if they consider the HALO "experimental". Insurance companies basically can call the shots on this stuff until it becomes the standard of care. It would seem a lot cheaper for them to pay for a HALO than major surgery and cancer treatment. Gosh, that's scary even to write!

I was just beginning to make peace with the chronic pain issue, and then this hit. Puts life in perspective very quickly!

Thanks again!

PaLady
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