For William, Paul, and all other 2+ year survivors

I would like to know if any of you 2+ year survivors are on any kind of acid reducing drug such as omeprazole or Pepcid, etc.

I have been on omeprazole since April of 2010--started on Pepcid after surgery, then changed to omeprazole by my oncologist. Now my oncologist says to reduce my dosage by half for about a month, and then totally quit the omeprazole (unless I have reflux problems).

I've been told by someone else who had EC to stay on meds for life or risk a recurrence of EC. What are your opinions? Are you still on any type of meds?

Thanks!

Melinda

Comments

  • paul61
    paul61 Member Posts: 1,391 Member
    I am on Omeprazole
    Melinda,

    I am on Omeprazole. I take 20 MG twice daily. In the morning and before bed. The last time I had an endoscopy my gastroenterologist saw some minor irritation and recommended I continue to take it. I am not sure about danger of recurrence from reflux but taking it works for me and does not seem to cause any side effects.

    Best Regards,

    Paul Adams
    McCormick, South Carolina

    DX 10/22/2009 T2N1M0 Stage IIB
    12/03/2009 Ivor Lewis
    2/8 through 6/14/2010 Adjuvant Chemo Cisplatin, Epirubicin, 5 FU
    Two year survivor

    Life may not be the party we hoped for, but while we are here we might as well dance!
  • T-Bird
    T-Bird Member Posts: 25
    paul61 said:

    I am on Omeprazole
    Melinda,

    I am on Omeprazole. I take 20 MG twice daily. In the morning and before bed. The last time I had an endoscopy my gastroenterologist saw some minor irritation and recommended I continue to take it. I am not sure about danger of recurrence from reflux but taking it works for me and does not seem to cause any side effects.

    Best Regards,

    Paul Adams
    McCormick, South Carolina

    DX 10/22/2009 T2N1M0 Stage IIB
    12/03/2009 Ivor Lewis
    2/8 through 6/14/2010 Adjuvant Chemo Cisplatin, Epirubicin, 5 FU
    Two year survivor

    Life may not be the party we hoped for, but while we are here we might as well dance!

    ditto
    I am not a 2 year survivor (so I hope you don't mind me replying), but am on Omeprazole 20 MG twice a day. I don't have any irritations but I think mine is more of a proactive type drug - same as Paul - no side effects.

    Teresa
  • Kenem
    Kenem Member Posts: 21
    paul61 said:

    I am on Omeprazole
    Melinda,

    I am on Omeprazole. I take 20 MG twice daily. In the morning and before bed. The last time I had an endoscopy my gastroenterologist saw some minor irritation and recommended I continue to take it. I am not sure about danger of recurrence from reflux but taking it works for me and does not seem to cause any side effects.

    Best Regards,

    Paul Adams
    McCormick, South Carolina

    DX 10/22/2009 T2N1M0 Stage IIB
    12/03/2009 Ivor Lewis
    2/8 through 6/14/2010 Adjuvant Chemo Cisplatin, Epirubicin, 5 FU
    Two year survivor

    Life may not be the party we hoped for, but while we are here we might as well dance!

    Protonix
    My gastro doctor (not oncologist) has me on one Protonix daily forever.
  • NGC1514
    NGC1514 Member Posts: 46 Member
    Kenem said:

    Protonix
    My gastro doctor (not oncologist) has me on one Protonix daily forever.

    After surgery
    The vagus nerve is severed during surgery and I was told by both my GI doc and surgeon that, along with hunger and heart rate, it also controls acid production. I've found that to me the case for me. While I still reflux, it is now bile rather than acid that comes up. Unfortunately, PPI and H2 inhibitors do nothing to counter bile. If you are taking a PPI drug and it's working, I envy you!

    Eric in Atlanta
    11 year survivor
  • annalan
    annalan Member Posts: 138
    Omeprazole
    Hi Melinda, my husband was dx in 2009, is 20 months post op. He had the IL. Since then he has been fortunate enough to have no reflux or indigestion problems, just sleeps with 3 pillows to elevate himself a little, but always slept with 2 anyway. He takes 1 x 20 mg Omeprazole before his breakfast. Eats a fraction of what he used to but maintains a good weight as he eats often.

    To Eric: Wonderful to read of another long term survivor on here, can I ask what stage your EC was and if you had any nodal involvement? My husband had 7 infected nodes and that worries me. He did Chemo before his op and both Chemo and radiation after it.
    Ann (2)
    wife of Alan Dx Sept 2009
    Ivor Lewis March 2010
    July 2011 NED
    Posting from England
  • Mazj
    Mazj Member Posts: 42
    annalan said:

    Omeprazole
    Hi Melinda, my husband was dx in 2009, is 20 months post op. He had the IL. Since then he has been fortunate enough to have no reflux or indigestion problems, just sleeps with 3 pillows to elevate himself a little, but always slept with 2 anyway. He takes 1 x 20 mg Omeprazole before his breakfast. Eats a fraction of what he used to but maintains a good weight as he eats often.

    To Eric: Wonderful to read of another long term survivor on here, can I ask what stage your EC was and if you had any nodal involvement? My husband had 7 infected nodes and that worries me. He did Chemo before his op and both Chemo and radiation after it.
    Ann (2)
    wife of Alan Dx Sept 2009
    Ivor Lewis March 2010
    July 2011 NED
    Posting from England

    Nexium first then Pantoprazole Sandoz
    Hi Melinda,
    My husband was diagnosed in 2005 and is 6 years post IL. Has generally suffered reflux since then. His endoscopy report of 2007 found 'moderate to severe reflux esophagitis' and had his Nexium increased from 20mg to 40mg. I am unsure of the reason why he now takes a different tablet(with a name you may or may not be familiar with as we are in Australia), but it is one each morning with breakfast. He too sleeps with his head elevated on a wedge pillow which appears to offer more relief. Appetite was remarkably good for the first few years following surgery but has decreased in the last few. This year he was diagnosed with metastases to the peritoneal cavity.
    Hope this helps
    Marilyn
  • dodger21
    dodger21 Member Posts: 85 Member
    Mazj said:

    Nexium first then Pantoprazole Sandoz
    Hi Melinda,
    My husband was diagnosed in 2005 and is 6 years post IL. Has generally suffered reflux since then. His endoscopy report of 2007 found 'moderate to severe reflux esophagitis' and had his Nexium increased from 20mg to 40mg. I am unsure of the reason why he now takes a different tablet(with a name you may or may not be familiar with as we are in Australia), but it is one each morning with breakfast. He too sleeps with his head elevated on a wedge pillow which appears to offer more relief. Appetite was remarkably good for the first few years following surgery but has decreased in the last few. This year he was diagnosed with metastases to the peritoneal cavity.
    Hope this helps
    Marilyn

    Nexium then Pariet
    This might sound odd, but I've been researching the reason why my latest endoscopy showed a possible polyp. I was on Nexium and am now on Parriet.
    There are certain gastric polyps you can get in the oesophagus that are caused by long term use of ppi's. Dr Google (yes, I know that's bad) says that having a ppi side effect of gastric polyps means you are more likely to get dysplasia again in your oesophagus which we all know then could turn malignant.
    Maybe your doctor is trying to wean you off it to prevent dysplasia occurring again in a brand new oesophagus. I might be totally wrong but it is just a thought.
    Danielle
  • BMGky
    BMGky Member Posts: 621
    I'm glad you posted this
    I'm glad you posted this question. i've been wondering about PPI's. Some of my friends are for them. Some of my friends are against them. We're for our friends..... Doctors will say to take them, it won't hurt. But some doctors say that if have no reflux symptoms, then stop them. It would be great if your doctor would tell you why he is suggesting this decrease in PPI usage.

    I'm putting a copy of an article on EC completed in July of this year. It mentions PPIs. The article is really over my head. Maybe you all can tell me what it means.

    It is from Medscape Medical News
    Severe GERD Symptoms Inversely Linked to Esophageal Cancer
    Laurie Barclay, MD
    Authors and Disclosures
    Print This Email this
    Share

    July 21, 2011 — The risk for esophageal adenocarcinogenesis is significantly higher in medically treated patients with mild or absent symptoms of gastroesophageal reflux disease (GERD) vs those with severe symptoms, according to the results of a cross-sectional study reported in the July issue of the Archives of Surgery.

    "Screening for esophageal adenocarcinoma has focused on identifying Barrett esophagus (BE) in patients with severe, longstanding symptoms of ...GERD," write Katie S. Nason, MD, MPH, from the Division of Thoracic and Foregut Surgery, University of Pittsburgh in Pittsburgh, Pennsylvania, and colleagues. "Unfortunately, 95% of patients who develop esophageal adenocarcinoma are unaware of the presence of BE before their cancer diagnosis, which means they never had been selected for screening. One possible explanation is that no correlation exists between the severity of GERD symptoms and cancer risk."

    The hypothesis tested by this study was that severe GERD symptoms are not associated with an increased prevalence of BE, dysplasia, or cancer among patients undergoing primary endoscopic screening. At a university hospital, 769 patients with GERD underwent primary screening endoscopy from November 1, 2004, through June 7, 2007. The primary study endpoint was esophageal adenocarcinogenesis, defined as BE, dysplasia, or cancer, as a function of symptom severity and proton pump inhibitor (PPI) therapy.

    Esophageal adenocarcinogenesis was detected in 122 patients. Endoscopic findings of esophagitis correlated positively with an increasing number of severe GERD symptoms (odds ratio [OR], 1.05; 95% confidence interval [CI], 1.01 - 1.09). In contrast, the odds of adenocarcinogenesis were lower with increasing number of severe GERD symptoms (OR, 0.94; 95% CI, 0.89 - 0.98).

    Among patients taking PPIs, those with no severe typical or atypical GERD symptoms were 61.3% and 81.5% more likely to have adenocarcinogenesis, respectively, than patients who reported that all symptoms were severe.

    "Medically treated patients with mild or absent GERD symptoms have significantly higher odds of adenocarcinogenesis compared with medically treated patients with severe GERD symptoms," the study authors write. "This finding may explain the failure of the current screening paradigm in which the threshold for primary endoscopic examination is based on symptom severity."

    Limitations of this study include cross-sectional design, inability to determine causality, failure to control for all known risk factors for BE and esophageal adenocarcinoma, and lack of validation of the symptom severity scale developed for this study.

    "These findings ... suggest that, rather than recommending BE screening only in patients with long-standing, poorly controlled GERD, patients with long-standing but well-controlled symptoms of typical or atypical GERD may be a better population to target," the study authors conclude. "In addition, patients who present initially to the otolaryngology clinic with severe atypical-predominate symptoms should be strongly considered for primary screening endoscopy. Larger-scale prospective studies, ideally having a validated measure of symptom severity, will enable us to determine the prevalence of BE stratified by symptom duration, antisecretory medication use, and current symptoms severity and lead to stronger guidance in recommendations for screening endoscopy."

    The Robert Anthony McHugh Research Fund for the Prevention and Early Detection of Esophageal Cancer, American Surgical Association Foundation Fellowship Award, and the National Institutes of Health supported this study. The study authors have disclosed no relevant financial relationships.

    Arch Surg. 2011;146:851-858.
  • bingbing2009
    bingbing2009 Member Posts: 177
    Thanks to all
    I really appreciate everyone's responses.

    @Paul--As always, you are a wealth of info and always willing to share. I truly appreciate that.

    @Teresa--Of course I don't mind you responding. The more I hear, the better. Thanks for sharing!

    @Kenem--Thank you so much for responding. I'll have to look up your drug. :)

    @Marilyn--So sorry to hear of the recurrence, but thanks so much for sharing the info. Sending you lots of hugs and all the support possible!

    @ Ann(2)--I really appreciate you sharing the info.

    @Eric--You are such an inspiration. I love hearing from an 11 year survivor! Strange you mentioned bile, because that's mostly what I vomited for weeks following my surgery.

    @Daniele--What an interesting take on the polyps. Hadn't thought about that. Thanks!

    @BMGky--I won't try to tackle that study, but I will say it is somewhat confusing because it seems that those with severe GERD symptoms are not developing cancer to the degree that others are. Thanks for sharing.

    My plan? I'm going to have a heart to heart with my oncologist when I see him next February. I will question about polyps and all the other long-term possible problems of staying on Omeprazole. When I do find out something, I'll share the info.
  • GerryS
    GerryS Member Posts: 227 Member

    Thanks to all
    I really appreciate everyone's responses.

    @Paul--As always, you are a wealth of info and always willing to share. I truly appreciate that.

    @Teresa--Of course I don't mind you responding. The more I hear, the better. Thanks for sharing!

    @Kenem--Thank you so much for responding. I'll have to look up your drug. :)

    @Marilyn--So sorry to hear of the recurrence, but thanks so much for sharing the info. Sending you lots of hugs and all the support possible!

    @ Ann(2)--I really appreciate you sharing the info.

    @Eric--You are such an inspiration. I love hearing from an 11 year survivor! Strange you mentioned bile, because that's mostly what I vomited for weeks following my surgery.

    @Daniele--What an interesting take on the polyps. Hadn't thought about that. Thanks!

    @BMGky--I won't try to tackle that study, but I will say it is somewhat confusing because it seems that those with severe GERD symptoms are not developing cancer to the degree that others are. Thanks for sharing.

    My plan? I'm going to have a heart to heart with my oncologist when I see him next February. I will question about polyps and all the other long-term possible problems of staying on Omeprazole. When I do find out something, I'll share the info.

    Just to add..........
    I am on famotidine 20mg 1 time a day. I have no side effects and no reflux. I had IL in March 2010 followed by 2 rounds of chemo. Am approadching my 2 year survival in Feb. My best to you and all with this diseased.

    Gerry
  • llamp0922
    llamp0922 Member Posts: 40

    Thanks to all
    I really appreciate everyone's responses.

    @Paul--As always, you are a wealth of info and always willing to share. I truly appreciate that.

    @Teresa--Of course I don't mind you responding. The more I hear, the better. Thanks for sharing!

    @Kenem--Thank you so much for responding. I'll have to look up your drug. :)

    @Marilyn--So sorry to hear of the recurrence, but thanks so much for sharing the info. Sending you lots of hugs and all the support possible!

    @ Ann(2)--I really appreciate you sharing the info.

    @Eric--You are such an inspiration. I love hearing from an 11 year survivor! Strange you mentioned bile, because that's mostly what I vomited for weeks following my surgery.

    @Daniele--What an interesting take on the polyps. Hadn't thought about that. Thanks!

    @BMGky--I won't try to tackle that study, but I will say it is somewhat confusing because it seems that those with severe GERD symptoms are not developing cancer to the degree that others are. Thanks for sharing.

    My plan? I'm going to have a heart to heart with my oncologist when I see him next February. I will question about polyps and all the other long-term possible problems of staying on Omeprazole. When I do find out something, I'll share the info.

    Hello!

    I am a four year survivor squamous cell carcinoma. I was inoperarable, so I was treated with chemo (Cisplatin and 5FU) and radiation. I didn't have surgery. I take 20 mg. omeprazole twice daily (am-before eating, and pm before bed), sleep with my head elevated and still have some reflux symptoms like coughing, although only rare heartburn.

    During my last scope, I was told that I have polyps in my stomach. I was concerned, but the doctor thinks that they are related to the omeprazole. I have tried to cut back on my dosage, but I experience significant difficulty swallowing when I take only 20 mg.

    I have had some joint issues that my primary thinks may have a correlation to the omeprazole, but not taking the medicine isn't an option if I want to eat.

    I wish you luck! Keep us posted on what you discover!
  • Donna70
    Donna70 Member Posts: 852 Member
    llamp0922 said:

    Hello!

    I am a four year survivor squamous cell carcinoma. I was inoperarable, so I was treated with chemo (Cisplatin and 5FU) and radiation. I didn't have surgery. I take 20 mg. omeprazole twice daily (am-before eating, and pm before bed), sleep with my head elevated and still have some reflux symptoms like coughing, although only rare heartburn.

    During my last scope, I was told that I have polyps in my stomach. I was concerned, but the doctor thinks that they are related to the omeprazole. I have tried to cut back on my dosage, but I experience significant difficulty swallowing when I take only 20 mg.

    I have had some joint issues that my primary thinks may have a correlation to the omeprazole, but not taking the medicine isn't an option if I want to eat.

    I wish you luck! Keep us posted on what you discover!

    2yrs on the 8th
    Hi,
    I am a 2 yr survivor like Paul on the 8th and so happy to be one. I am on Omeprazole 40 mg in the am and I take Zantac liquid before bed but think they are changing me to the Omeprazold also at night. I was given the impression to take anti reflux for the rest of my life. I have had bad trouble with aspirating so very afraid of reflux and had to go to the ER after a bad episode, so I rather be safe than sorry.
    Take care,
    Donna70
  • sandy1943
    sandy1943 Member Posts: 824
    I'm 4 yrs since dx. I've
    I'm 4 yrs since dx. I've taken 20 mg omeprazole once a day since surgery . I also use a acid reducer that I buy at the health food store for acid flareups. It works better than other instant meds-like mylanta , tums etc. My reflux has gotten worse in the last month. If it keeps on, I will see my gastrologists. He has told me it was important to keep the acid down.
  • bingbing2009
    bingbing2009 Member Posts: 177
    Thanks so much
    @ Gerry--Now I'm starting to learn lots of new meds names. Never heard of what you're taking, I'll have to check it out. Thanks for sharing.

    @llamp--Hmmm. Another comment about polyps plus the joint problems--sure makes me wonder about long-term problems with remaining on omeprazole. I'll be anxious to hear what my doc says when I have that heart to heart with him.

    @Donna--Like you and Paul, I'm thrilled to be a 2 year survivor. I've followed both of you closely since we were diagnosed and had surgery within a couple of months of each other.

    @Sandy--I really hate to hear that you are having more and more reflux problems. Sure hope everything is okay with you. Thanks so much for sharing.

    Melinda
  • jgwright
    jgwright Member Posts: 242
    BMGky said:

    I'm glad you posted this
    I'm glad you posted this question. i've been wondering about PPI's. Some of my friends are for them. Some of my friends are against them. We're for our friends..... Doctors will say to take them, it won't hurt. But some doctors say that if have no reflux symptoms, then stop them. It would be great if your doctor would tell you why he is suggesting this decrease in PPI usage.

    I'm putting a copy of an article on EC completed in July of this year. It mentions PPIs. The article is really over my head. Maybe you all can tell me what it means.

    It is from Medscape Medical News
    Severe GERD Symptoms Inversely Linked to Esophageal Cancer
    Laurie Barclay, MD
    Authors and Disclosures
    Print This Email this
    Share

    July 21, 2011 — The risk for esophageal adenocarcinogenesis is significantly higher in medically treated patients with mild or absent symptoms of gastroesophageal reflux disease (GERD) vs those with severe symptoms, according to the results of a cross-sectional study reported in the July issue of the Archives of Surgery.

    "Screening for esophageal adenocarcinoma has focused on identifying Barrett esophagus (BE) in patients with severe, longstanding symptoms of ...GERD," write Katie S. Nason, MD, MPH, from the Division of Thoracic and Foregut Surgery, University of Pittsburgh in Pittsburgh, Pennsylvania, and colleagues. "Unfortunately, 95% of patients who develop esophageal adenocarcinoma are unaware of the presence of BE before their cancer diagnosis, which means they never had been selected for screening. One possible explanation is that no correlation exists between the severity of GERD symptoms and cancer risk."

    The hypothesis tested by this study was that severe GERD symptoms are not associated with an increased prevalence of BE, dysplasia, or cancer among patients undergoing primary endoscopic screening. At a university hospital, 769 patients with GERD underwent primary screening endoscopy from November 1, 2004, through June 7, 2007. The primary study endpoint was esophageal adenocarcinogenesis, defined as BE, dysplasia, or cancer, as a function of symptom severity and proton pump inhibitor (PPI) therapy.

    Esophageal adenocarcinogenesis was detected in 122 patients. Endoscopic findings of esophagitis correlated positively with an increasing number of severe GERD symptoms (odds ratio [OR], 1.05; 95% confidence interval [CI], 1.01 - 1.09). In contrast, the odds of adenocarcinogenesis were lower with increasing number of severe GERD symptoms (OR, 0.94; 95% CI, 0.89 - 0.98).

    Among patients taking PPIs, those with no severe typical or atypical GERD symptoms were 61.3% and 81.5% more likely to have adenocarcinogenesis, respectively, than patients who reported that all symptoms were severe.

    "Medically treated patients with mild or absent GERD symptoms have significantly higher odds of adenocarcinogenesis compared with medically treated patients with severe GERD symptoms," the study authors write. "This finding may explain the failure of the current screening paradigm in which the threshold for primary endoscopic examination is based on symptom severity."

    Limitations of this study include cross-sectional design, inability to determine causality, failure to control for all known risk factors for BE and esophageal adenocarcinoma, and lack of validation of the symptom severity scale developed for this study.

    "These findings ... suggest that, rather than recommending BE screening only in patients with long-standing, poorly controlled GERD, patients with long-standing but well-controlled symptoms of typical or atypical GERD may be a better population to target," the study authors conclude. "In addition, patients who present initially to the otolaryngology clinic with severe atypical-predominate symptoms should be strongly considered for primary screening endoscopy. Larger-scale prospective studies, ideally having a validated measure of symptom severity, will enable us to determine the prevalence of BE stratified by symptom duration, antisecretory medication use, and current symptoms severity and lead to stronger guidance in recommendations for screening endoscopy."

    The Robert Anthony McHugh Research Fund for the Prevention and Early Detection of Esophageal Cancer, American Surgical Association Foundation Fellowship Award, and the National Institutes of Health supported this study. The study authors have disclosed no relevant financial relationships.

    Arch Surg. 2011;146:851-858.

    Never had Reflux
    Or heartburn, for that matter, and yet I've had that "sour stomach" a bunch, mostly caused by the stress of being an electrical contractor. I'd go through Tums, a bottle a month. And yet, when dysphagia started appearing, the endoscopy showed major acid damage to the gastro-esophageal junction, and Barret's Esophagus.

    So, did I have GERD, or not? Well, if so, it was so mild, I never felt the need for any of the PPIs. If it had been stronger, and I'd taken Prilosec or whatever, I probably wouldn't be in this situation, so I can see where the article is coming from.

    --Jerry
  • doodie
    doodie Member Posts: 3
    3 year suriver
    My surgeon originally said after my surgery that I would be on a pro ton pump inhibitior the rest of my life, then later say I could try and be weaned off it. I took these meds for years before my surgery, and of course, ended up with esophageal cancer anyway...I spoke to my gastrointologist about getting off protonix and he said try weaning myself off so I did. I did end up in the hospital with an ulcer...but am doing well now. Don't know if that was the reason or not... I take protonix when I feel I need it. I also, as many of you sleep elevated with pillows, have for years. The problem with the pro ton pump inhibitiors is they don't allow your body to absorb calcium and therefore causes weakened bones, osteoprosis...which my mom had very bad along with copd and being so bent from the osteoprosis made her breathing worse with the copd. So therefore that scares me...but as I said if I'm not feeling well in tum take it for several days...It's hard to know the right thing to do, everything has side effects. I took 2 40mg twice a day for a long time, just take one now when I do take it. I know what that bile is ~ I had it so bad after surgery, walked the floor with it, and burning in my chest and throat but, havn't had that for a long time, thank God. I am 3 years 3 months past my surgery and doing rather well, some bad days but more good ones. I still hurt on my right side some days worse then others. I was fortunate my cancer was found early, and I didn't have to have treatments. They still removed the esophagus, and part of my stomach. Will be having my ct scan in Feb 2012 and praying for good results. I also had a pet scan before my surgery and it didn't show my cancer! THe biopsy from my endoscopic exam showed it plus the endoscopic ultra sound.My surgery was 9 hours long, they found out my esophagus was in the wrong place so it made it a little more complicated...my heart goes out to all of you.
    Blessings...
  • Kenem
    Kenem Member Posts: 21
    Kenem said:

    Protonix
    My gastro doctor (not oncologist) has me on one Protonix daily forever.

    Just wanted to add that the
    Just wanted to add that the Protonix caused my magnesium levels to drop below normal. So I am taking two (2) magnesium oxide supplements with every meal. Six magnesiums daily to counteract the one daily Protonix.