Barrett's Quiz

[daw]

http://www.clevelandclinicmeded.com/gimasters/barretts/intro1.asp

[tmca]

Daw, thanks for sharing this, it is very interesting......I do have one concern though..Maybe Im just feeling pessimistic today or something, but how can they keep lowering the percentage of EC caused from Barrett's and at the same time, over and over, we read that adenocarcinoma, almost always caused from Barrett's esophagus, is and has been for the last 10 yrs. the fastest growing cancer by incidence in the US? I wish they would create a study to explain that question....Take care, Tessa

[daw]

Tessa, Statistically speaking, maybe, due to better screening and more people visiting their doctors, the rates of a Barrett's diagnosis have increased even more than the rates of an EC diagnosis. Also do the EC numbers also include the other forms of EC like squamous cell which does not stem from Barrett's? Also I remember reading that many EC diagnoses are made even before a person knows he(she) has Barrett's and Barrett's may not even be included in their diagnosis.

That's the problem with some of these statistics....they may not include all the particulars and can be misleading at times.

[tmca]

daw, nope the sites say that the increase of "adenocarcinoma" of the esophagus as being the one increasing by incidence faster than any other cancer...On the other hand, they acknowledge that squamous cell carcinoma of the esophagus has dropped by incidence in the last decade, possibly because less and less people are smoking and smoking seems to be very significant in the development of squamous EC...I assume the increase of this type cancer is atleast partially responsible for so many studies currently being under way...Seems every major hosp or clinic is involved with several different studies to try and stop the progression of Barrett's....Tessa

[The Pard]

Hi Daw,

Maybe we can blame the advertising for Nexium
and the medical commercials that run in the doctor's waiting room for some patients
deciding to complain about having heartburn.
If it is not metioned, how are docs to help?

Could it be that more people are seeking treatment earlier? Smoking definitely is a big
contributor for cancer. I wonder how many
reflux sufferers still find a way to smoke.

The Pard

[daw]

The statement that had me scratching my head was: "The course of high-grade dysplasia is variable. Studies have shown progression rates of 15-55% at 5-8 years of follow up. High-grade dysplasia may also be intermittent or regress."

Intermittent or regress??? According to the literature, and I believe it may be mentioned in this educational quiz, Barrett's and low grade dysplasia do not go away. Other than biopsy and pathology error, how can high grade regress or be intermittent?

[The Pard]

Hi Daw,

When a fundo is done, the short segment barretts
can be moved back down below the LES where
similar cells are normal.

Skin cancer can now be treated with Imiquimod
in early stages, so just maybe the dysplasia
is misdaignosed as being more severe than
it is or the suppression of further acid damage
may be acting as a treatment allowing damaged
cells to recover unhampered by more irritation.
Normal mucosal secretions may also be theraputic
to recovery.
http://www.drmirkin.com/morehealth/1594.html

Never complain about good news.

The Pard

[daw]

Hi Pard,

Originally posted by The Pard Skin cancer can now be treated with Imiquimod in early stages....
Please explain the connection.
Originally posted by The Pard ....so just maybe the dysplasia is misdaignosed as being more severe than it is....
That's why I said biopsy/pathology error.
Originally posted by The Pard ...or the suppression of further acid damage may be acting as a treatment allowing damaged cells to recover unhampered by more irritation.
Normal mucosal secretions may also be theraputic to recovery.


That's the catch. Barrett's and dysplasia do not "heal". I'm not complaining....just being my skeptical self. :)

[The Pard]

Hi Daw,

I agree that barretts does not heal, but the short segment may only be gastric cells that appear to be above the les, because part of the stomach is above the diaphragm It may only be the stomach
tissue that they are calling barretts.

You are right about the posible error in the pathology testing. I suppose that they would rather err on the side of safety, than miss a cancer.
One must never doubt the body's ability to recover from irritation.

Don't ever stop believing in Santa Claus.

The Pard

[tmca]

Here is what Dr. Rice explained to me prior to my recent surgery in reference to Barrett's...If it is very short segment, around (0.5cm) then it is possible for him to remove that area during fundoplication..It isn't an absolute cure and there is always worry that "maybe we didn''t get it all" and that is why you would need continued surveillance......I have 6cm of barrett's cells so there is no way they could have possibly removed mine.... Dr Rice did tell me it is very unusual for any WOMAN to have 6cm barrett's esophagus... .Dysplasia doesn;t go away,and when it does then it must have been a sampling or pathology error.....Considering I got my information first hand from the head of thoracic surgery at CCF, then considering these reports from CCF, there must be some difference of opinions within......If I had 0.5cm barrett's Im not even sure I would have had my surgery....I worry about it not being removed, but rather just becoming mixed up in the wrap and not being able to see at EGD nor being able to biopsy....If I'm going to have this disease then I prefer it to stand up and be counted and not be hiding some where.....Tessa

[daw]

Originally posted by tmca
.....If I had 0.5cm barrett's Im not even sure I would have had my surgery....I worry about it not being removed, but rather just becoming mixed up in the wrap and not being able to see at EGD nor being able to biopsy....If I'm going to have this disease then I prefer it to stand up and be counted and not be hiding some where.....Tessa

I agree and that is one of the reasons I didn't run to have a fundo. I was diagnosed with 0.5cm barrett's in 2001 and, to make things more interesting, my GI doc has not been able to find it again, pathologically speaking. When and if meds stop working for me and/or there is a worsening of my condition then I will start considering surgery.

[tmca]

Daw, It is the strangest illness I have ever heard of..I have heard so many people say what you just said. Seems to be here one day and gone the next.....When i had invasive cancer in 95 it wasn't as nerve wrecking for me as what this entire last 18 months have been.....Atleast with a cancer diagnosis you know what you are up against and can get yourself armed to fight...With this, things seem to change at every EGD...BTW, I just yesterday talked to my drs. office about my recent EGD and the barrett's is still 6cm and low-grade.. ( I will pick up the path report later this week) but Im still showing alot of esophagitis and gastritis..Shouldn't the prednisone and MTX be helping that?....The damn prenisone is making me so hyper, Im a nervous wreck and cannot sit still...I clean and work until Im literally out of breathe and ready to pass out.....Take care Daw, tessa

[The Pard]

Hi TMCA,

Are you taking prednisone for crohns?

If so, what about immune modulators, like 5asa
which can give you a rest from the pred side effects?

The Pard

[tmca]

PARD, Im taking Prednisone and MTX for the scleroderma...MTX has been by injections once a week but soon Im going to start something called "ebrel"? That may not be right, but it is close...My Dr. is waiting to get the ok from my ins. to be given this med because it is soooooooo expensive, it is also by injection and I believe he says I will take it twice a week for awhile.......Thanks for your suggestion Pard, Im going to ask about it when I see my Dr....Take care, Tessa

[The Pard]

Hi Tessa,

I can't believe that they are foisting that treatment on you when it is not an effective one.
You are right about expensive at about $5K a month.

Scleroderma can progress and become fatal in some cases, depending on the location.

I think you will be mad as hell when you read the following link. Do you know how cheap doxycycline is? Did anyone even mention this?
Teenagers with acne take doxy for as long as five years without so much as a liver test.
Can the docs say the same about the poisons they are giving you?
The sooner treatment is started, the less damage is done.
http://www.drmirkin.com/morehealth/g163.htm

If they refuse to try this, at least insist on adding such an antibiotic to what you are already taking. Then they can claim a success, saying that you responded to what THEY WERE giving you.

The Pard

[tmca]

Pard, Im going to read that article right now..Thank you.....I have been taking cleocin for many weeks now, with no end in sight....Tessa

[The Pard]

Hi Tessa,

What does bacterial vaginosis have to do with scleroderma? Even if it worked, would you be
on it for many months?

THe Pard

[tmca]

LOL.....Pard, Im not taking it for that....I had oral surgery weeks ago becuase of an abnormal amt of inflammation and fibrosis in my jaw effecting my teeth and causing infection...I lost 5 teeth in the process, and have been having HORRIBLE jaw pain ever since.....I have asked to change antibiotics but my Dr. apparently thinks cleocin is the best.........Tessa

[The Pard]

Hi Tessa,

Thanks for clearing that up. It didn't make sense
if you took it for scleroderma. Be prepared for
loose stools because that med is good at killing
off the good bacteria as well.
It can even cause Clostridia Dificille

http://www.diagnosishealth.com/digestivenews1.htm

The Pard

[The Pard]

Hi Tessa,

A chronic infection in the bone may need another antibiotic in unison. Your doc should be paying closer attention to this.

Have you had a Dexa Bone Scan of the jaw to look for hairline fracture that may not be healing.
That could be the cause of the pain.

The Pard

[daw]

Originally posted by The Pard
I can't believe that they are foisting that treatment on you when it is not an effective one.

I wouldn't go as far as to call her treatments ineffective. Many patients improve and/or go into remission while on Prednisone and Methotrexate. Throwing all caution to the wind and "trying" a supposed new theory of treating systemic scleroderma with antibiotics needs careful consideration. Just my 2 cents.

[The Pard]

Hi Daw,

You were selectively reading the parts you took issue with.

The Pard

[The Pard]

Hi Daw,

I guess I may have sounded like the metho/pred was
a waste of time. In rheumatoid arthritis it does
cause remission in some but it only slows down the progression in most. Those poisons are toxic enough to cause cancer in healthy subjects so
they are used with this knowledge by the doctors.
They also can not be taken for extended times.

With scleroderma, one can die when internal organs turn to leather. RA does not kill.
The docs will probably refuse to discontinue the meds they are comfortable with because that is what they learned in med school and new ideas
are like new tricks.
When the side effects are unable to be tollerated
they will be discontinued, even if the disease is progressing.

Similar doubts were expressed when Helicobacter was discovered to be the cause for ulcers.

I was emphasizing the relative safety of doxycycline/minocycline in comparison.
Surely, adding an antibiotic to the treatment
could only shorten the duration of metho/prednisone and reduce the damage it caused to the liver, bones etc and at least offer
a chance for arresting the scleroderma for good.

What doc would listen to a patient without doing some homework first? If that is the result
of Tessa insisting on something, it could help many of his patients with similar troubles.

Remember... an expert is defined as...
ex = has been
spurt = a drip under pressure :)

THe Pard

[daw]

Hi Pard,
Of course the minocycline/doxycyline is safer in comparison to Prednisone and Methotrexate. It's something patient's should look into. But be aware that there is on going research and clinical trials with these and many other autoimmune type drugs as well. Many of the Scleroderma websites discuss these very subjects.

I agree that any new ideas are usually met with skepticism. I think I just reacted in defense of Tessa following the currently accepted medication protocol. I guess what I'm getting at is that one can propose a new treatment without making it sound like the current treatment is shafting the patient. Must be the nurse in me. :)

daw (saying Merry Russian Christmas)

[The Pard]

Hi Daw,

I was just trying to be sensational to grasp
attention like a headline.... example...
"WE GOT HIM!"

I guess you have exchanged gifts already?

At least the weather is being accommodating
for this Christmas. It is a lot more than just a
Russian Christmas, Nyet?

The Pard (of Ukrainian descent)

[tricia]

Pard you and Dr Mirkin both -- sensensionalism


Was just reading this thread and am really surprised you were diagnosed with Scleroderma Tessa. We talked about the possibility a while back-- but wasn't aware you were diagnosed with it.-- thought it had been dismissed. Anyway just sending support straight your way.Thats a very good regimin you're on..-- from what i've read.-- but unfortunately it can take a lot of time Hope your jaw pain gets better real soon. Take Care and Best Wishes

[daw]

Originally posted by The Pard
At least the weather is being accommodating for this Christmas. It is a lot more than just a Russian Christmas, Nyet?The Pard (of Ukrainian descent)

Da. Greek Orthodox too. It always seems to snow on our Christmas Eve or Christmas Day...at least where I live. Guess that's because it's January.
daw (of Russian and Chech/Slavish decent)

[tmca]

Daw, Pard, and tricia,
I was just reading back over all these good suggestions and concerns that you guys have and I want you to know, I feel very lucky to have found such good people, who try to help as much as what the three of you do...Tricia, I was diagnosed a few months ago when this jaw and oral problem came about...I stayed away from the boards for awhile while I was trying to absorb it and get myself a little used to the idea of having it...I did not handle this diagnosis well at all initally! The treatment is pretty brutal but Im determined to do whatever it takes...Right now the jaw pain is about more than I can handle...I also think this combination of meds is making me very emotional, as I cry at the drop of a hat, that has never been the case with me before..Im a district supervisor, I cant be letting my emotions show...:) Pard....I try to research all these different drugs and treatments but the bottom line is, I DONT KNOW what is best for me...I have tried to pick really good drs. and by doing so I Pray to God that I can trust their judgements and choice of meds....I welcome and appreciate all advice and info anyone can share with me, I want to be knowledgeable about this, but Im not sure I can be in charge of my own medication plan....Does that make sense? just like when i choose one of the best surgeons at one of the best hosp. for my recent surgery...Im not sure I made a wise choice there, but I sure thought I was.....I am going to ask about a bone scan on my jaw because it is making me nuts....I want you guys to know my WCC was well over 26,000 last week and my Dr. says in part it is the lymphocytes reacting to the inflammation and also reacting to the steroids...There is some fibrosis in my lungs but not alot, yet, that is the biggest concern to try and stop this before it gets bad in that area.....My GI system is not doing that well right now and Im taking the miralax twice a day and zelnorm twice a day to keep things working there......thank you for all your help, I cant tell you how much I appreciate you...Tessa

[The Pard]

Hi Tessa,

Your doc should be considering putting you in the
hospital for intravenous antibiotics until that
number drops to something manageable.

If your lungs or other internal organs are affected by scleroderma and it is worsening, they are not likely to tell you that there is no hope
until it is obvious. They would just as soon keep operating until you figure that out for yourself. Simply telling you that there are meds that they can try, while hoping for the best, is not good enough. More surgery might be more pain for no good reason.

Have you asked the doc what your prognosis is yet?
If not, you should put him on the spot...
then ask to have minocycline added to your regimen. At the very least, it will help more than the other meds alone. What will you do when
you must stop the prednisone?

Sorry if I have been too blunt. I want you to
stand up for yourself.

The Pard

[tricia]

Tessa So truly sorry you have to go through all of this -- i'm going to read up all i can on scleroderma and all of the very latest promising treatments and clinical trials

Wondering if you've read up on esophageal scleroderma -- i've read conflicting studies on whether fundo surgery should be done.-- was thinking -- maybe that's why your endoscopy results were such.

Was so happy when you felt pretty good after your operation -- thought it would be onward and upward for you -- and now this . Geeze not fair Tessa , it ticks me off. and it's just not fair

Hey you've climbed mountains before -- you can do it again. Tessa Iif you ever need to talk , please get my Email

I strongly agree with Pard on IV antibiotics -- it would help the jaw pain a lot quicker too. A lot of people have tiny portable IVs at home.--they're really neat-- they go to the store with etc.-- not big clunky things you have to walk around-- noone can even see them Anyway Tessa My thoughts are with you-- and hope you feel better real soon Take Care

[daw]

Originally posted by The Pard
Your doc should be considering putting you in the hospital for intravenous antibiotics until that
number drops to something manageable.


You make it sound like one can demand their doctor admit them to a hospital for IV antibiotics....and for a reason that is not totally accepted in the medical world.
How far do you think she would get?

I'm not disagreeing with you, although I haven't read other studies about antibiotics treating Scleroderma, I just think one has to be realistic and knowledgeable before they start demanding specific treatments.

[tmca]

Pard, I appreciate everything you have told me....A few weeks ago, you might have scared me to death but Im more able to deal with this now....My dr. has mentioned me having an IV push for the WCC but we havent decided about that yet...I also worry about surgeries....Im afraid that to keep having surgeries will just force this disease to attacke other areas that may be much harder to treat, and may creat much mor eserious problems...I don;t even know if thats possible but it does seem as when one thing is fixed, supposedly, then something else happens.......Tricia, thanks for your kind words...I might take you up on the email thing...Tessa....

[The Pard]

Hi Tessa,

I hope you print that article on SD and take it with you on your next doctor appointment.

Let your doctor look up the study on long term
antibiotics for himself. That might be all it takes.

Good luck..

The Pard

[RonD]

Originally posted by daw
The statement that had me scratching my head was: "The course of high-grade dysplasia is variable. Studies have shown progression rates of 15-55% at 5-8 years of follow up. High-grade dysplasia may also be intermittent or regress."

Intermittent or regress??? According to the literature, and I believe it may be mentioned in this educational quiz, Barrett's and low grade dysplasia do not go away. Other than biopsy and pathology error, how can high grade regress or be intermittent?

I doctor at the Mayo Clinic. I have twice been diagnosed with low grade dysplsia and twice it has regressed to no dysplsia with PPI's. However my doctor says they aren't good enought to get Barrets to regress yet. Maybe someday.

[daw]

Originally posted by RonD
..........I have twice been diagnosed with low grade dysplsia and twice it has regressed to no dysplsia with PPI's. However my doctor says they aren't good enought to get Barrets to regress yet. Maybe someday.

My first set of biopsies showed a minute focus of intestinal metaplasia and I was diagnosed with short segment (0.5cm) Barrett's. Since then my biopsies (many) keep coming back with NO intestinal metaplasia. It's posssibe that the GI doc just isn't hitting the right area to biopsy. Why can't this be the case with dysplasia...just not picking it up because it may not be widespread in the Barrett's and therefore missed on future biospies?

I can understand this faster than I can understand how a cell abnormality is able to return to a former state.

[kathy208]

Hi- ive just been diagnosed with Barretts.. have had hiatal hernia for years.. been on nexium for 2 years.. I thought I was controlling things with my diet.. I get a scope and dr says I have barretts.. Its a terrifying thing to hear...I used to eat a daily orange...I never thought it was bothering me... it was for breakfast... I limited the caffiene in the evening.. i ate light meals in the evening... Now.. ive dc`ed the oranges.. drinking more water cut out caffiene almost entirely and I read that you can have reflux and not know it... is there anything else that can be done?? i have to have another scope in 6mths... Im very scared

[daw]

Hi Kathy208,
I'm assuming your Barrett's was diagnosed through biopsies. A visual diagnosis via endoscopy is not definitive. Also some people get their biospy slides reread by an expert GI pathologist as a second opinion. John Hopkins has a "mail in your slides" type of service. http://pathology.jhu.edu/beweb_chat/
You should find out if you have short or long segment Barrett's and if there was any dysplasia. Get a copy of your biopsy results.

We are all frightened with a diagnosis of Barrett's but if you read enough of the posts and sites you'll see it's just another chronic disease that you can live with and only a very small percentage of people end up with esophageal cancer.

I think you are doing the right thing in curbing your diet to exclude GERD no-no foods...this goes a long way in controlling any silent GERD. Other foods are onions, garlic, any of the mints, pepper(s), citrus, chocolate, tomatoes and anything that bothers you. No smoking or drinking alcohol. Also you need to get a handle on anxiety/stress if that's a problem in your life.

You didn't say whether your doctor increased your meds. That may not be necessary if you are changing your diet and have no symptoms. If your next scope shows a worsening then your doctor may suggest increasing your meds or possible surgical intervention.

[tmca]

Kathy, do you have low-grade dysplasia...I ask that question because 6 month repeat EGD is standard for low-grade....Everything Daw says is right and I know it seems like a terrifying diagnosis, once you become familiar with it and get knowledgeable, you will feel alot better.....There is alot of good advise to be found at www.barrettsinfo.com....Many of us with barrett's have referred to that web site to answer many questions...John hopkins has a wonderful support message board for barretts esophagus, the people there will give you alot of support if you would like to join us...Just go to John Hopkins site and type in barretts esophagus, you will find it......Do you have a copy of your biopsies pathology report? If you do could you please tell us what it says so we can offer you more advise and better support....Please take care, Tessa