Barrett’s esophagus

I'll private message you. Yes... you're a mess. You need better care... but jumping into your shitstorm of maladies and performing triage to decide what's going to kill you first... a tough one. And of course, QofLife is what you care about most. Free Zoom call in 2 hours (9am Eastern).

Gary

Well... you're still young enough to overcome this... if you are having doctors fully evaluate and prioritize your current issues. Not being a doctor, the problem for me is... which of your problems is at the top of the list? Because many of your issues cause your current symptoms of tummy and intestinal cramps, motility issues, nausea, etc.

Has your primary care doctor not ordered further tests or referred you to any specialists? You seem to have somewhat current GI information... from EGD and other procedures... correct? Taking these things one at a time... if your long term Barrett's is now showing dysplasia (especially high-grade dysplasia) in some parts of your esophagus... you are now very close to an esophageal cancer diagnosis. And if this is happening... it can progress very quickly... it doesn't necessarily stay stage 1 for six months. It is why most of us EC patients are caught at stage 3 and 4. You must be having EGD (preferably EUS) procedures every 6 months AT LEAST. rarely is anyone symptomatic at stage 1 or stage 2 with esophageal cancer. But since you have such nasty symptoms full time because of all you are suffering from... I'll assume you are constantly being checked! Yes?

Your gastroparesis... are you currently on metoclopramide? Guessing your vagus nerve communications aren't working very well. But us EC patients who've had esophagectomy surgeries... we know, because our vagus nerves have been completely severed. And most of us have adjusted, and are doing just fine... as long as we stay cancer free.

So... how is your pylorus functioning? What has been done down below to help motility... botox injection? Any stretching? Endoscopic snip snip of this muscle to loosen things up? Of course bile reflux (and acid reflux) can worsen.

Your pancreatitis... how severe is it? Has it been fully classified... mild or severe? Chronic or acute? Any biopsies done? Any gall bladder issues? How are you pooping... and what do they look like?

Look... I'll come privately and maybe we can chat. Obviously we want to know about any cancers you could have, or may be on the verge of... but what's just as important is your current QofLife... because if that sucks 24/7... what's the point of living.

See you privately,

Gary

What dose of Prilosec are you on. I was diagnosed with Barrett’s 4 months ago. No dysplasia. I was prescribed 40 mg of a ppi twice daily, sucralfate liquid 10 ml before meals and bedtime and baclofen 5mg 3 times during day and at bedtime. I am also taking vitamin D3 6000 and folate and other B vitamins.

Esophageal cancer is EC

I was diagnosed with reflux and Barrett’s ( no dysplasia) 4 months ago. I take OTC nexium two 20 mg twice daily, sucralfate 10 ml before meals and bedtime, baclofen 5 mg 3 times during day and at bedtime. I suppose my treatment is forever.

Well for those of you on this "blog" here's my story; I was diagnosed in April of 2023 (after having to leave an ETA
Festival) with esophageal adenocarcinoma and was quite upset and scared! I was immediately referred to radiation & chemotherapy specialists in Knoxville, Tn. as well as 3 sets of surgeons(all who wanted to cut me) When I am faced with what I consider serious issues I sink myself into looking into things and educating myself!
I was 75 at the time and after finding out how serious and debilitating the surgery was I told the surgeons I was going to opt for radiation & chemo and if I could get 3,or so more years with some quality of life that would be my choice! I was probably between stage 1 & 2. I was referred to a radiation MD who wanted to start treatment right away for 6 weeks along with 2-21/2 hrs. of chemo every Friday. Found out that this was "photon radiation" they were going to do but in my research found out that Knoxville, Tn. had one of only 39(at the time) PROTON radiation centers in the country so I called them right away and was seen that same week. I had an interview with Dr. Ryan Grover (an outstanding radiation DR.) and started treatments right away. The difference between the two is proton targets the tumor and stops while photon hits the tumor then goes "through" the body which could cause problems with healthy organs as well as having worse side effects. So after 6 weeks every day of radiation with chemo treatments those Fridays I was done(sort of) After waiting approx. 2-3 mos. for the "dust to settle" I had a Pet scan that told the doctors that they had made my EC go away so I got to ring the bell. Well that's not the end of it by any means. I continued to have pet scans every 3 mos.(now on every 6) but during a follow up endoscopy was told I had Barret's with dysplasia(had been told earlier I had Barret's) but now the dysplasia cells could become cancerous and that I would most likely need some sort of ablation process! I said okay let's start. Unfortunately where I now live (Brunswick, Ga.) there was NOONE that could perform that procedure so my choice was going to Savannah or to the Mayo Clinic in Jacksonville. Guess where I picked. Again I was fortunate in that I got put into the hands of one of the country's foremost gastroenterologists (Dr. Eluri) that could do the procedure. My wife and I have to go on a Thursday, spend the night and the procedure is done early Friday morning so after I am out of recovery we can head home. I have had two "cryoablation" procedures and they (so far) have been successful in reducing my Barret's Esophagus and preventing the cancer from reoccurring! I am now 77 and have to take my daily naps as I tire out but am eating fairly well keeping away from anything too spicy but am able to still have my glass of Cabernet with dinner and am going on an 8 day ETA cruise next month!! I have been very fortunate and realize "life is terminal" so I am doing what I can to enjoy every day. I wish "everyone " (along with those caring people who also have to deal with this "God awful disease") the best moving forward and to stay positive as difficult as it may seem! Two recommendations I would make are if you have the wherewithal to do it is, if you need radiation treatment find a facility that offers PROTON and if you can get both a consultation and treatment at a Mayo Clinic I would "highly recommend it! So Doctor Gary,(I say that because in your comments you sound like one) what might you say about my synopsis and story??

Chip, Well done on taking charge of your own healthcare and making decisions that work for you. Well done on doing an ETA cruise (things that you enjoy). You are able to eat well now (which is not the case for some time after the surgery), so eat up, stay healthy and keep up the good fight. What a great success story. thanks for sharing. I celebrate with you.

Well done, Chip. My husband had Barrett's esophagus and had an ablation at Lahey Clinic, circa 2012. He had routine endoscopies since and had developed Barrett's for a second time, this time with dysplasia. Biopsies revealed cancer cells in the cardia area. A small, pea-sized tumor was removed but still cancer cells remained, at which time we saw an oncologist and surgeon. The cancer was stage 1 with no lymph nodes involved. Instead of researching, as you wisely did, we made the wrong choice. Hubby was determined not to have to vomit constantly and agreed to the surgery instead—nothing could have been worse. For the first year (plus), he vomited 7 or 8 times each night, became malnourished and lost more than 100 lbs. The recovery has been brutal and almost two later he is still suffering. Surely the surgeon knew this would be a likely issue but never said anything about the probability of post-surgical nausea and vomiting. Instead he said that my husband was a "mystery." You were smart to do research beforehand and this should be a lesson to all of us. Familiarize yourself with all the information that is available: forewarned is forearmed.

Stever1,
Thank you for your very nice comments and assessment of my "epistle". lol.
I (along with my wife's support) try to remain positive and enjoy each day as it comes.
Thank you again and stay well!

aheid,
I am so sorry to hear the hardship you "both" are having to deal with because of this absolutely terrible disease. I was in the right place at the right time and through a extensive research feel I have found the right people and the best way "for me" to continue my fight.
I have been very fortunate which is not to say things could not change but having said that I do my best to remain upbeat and positive. My heart goes out to you and I will pray that your husband's situation will improve. Stay as positive as you can and if you don't like the answers you are getting find new ones. Keep me posted please.