Come join others currently navigating treatment in our weekly Zoom Meetup! Register here: Tuesdays, 1pm ET.
Fill Out Your Profile to share more about you. Learn more...

Aromatase Inhibitors and GERD?

Options

Hello friends,

Has anyone dealt with reflux or GERD while taking AI’s?

If so, have you used medication to deal with it and what was the result?

(I’m on my second AI, so that’s 2 1/2 years with severe reflux. Working with a gastroenterologist now to manage the reflux and try to stay on Exemestane for a few more years.)

thanks,

Buttercup

Comments

  • lillyishere
    lillyishere Member Posts: 770
    edited October 2022
    Options

    Buttercup, yes, I had problems with letrozole. Currently, I am on the 8th month of exemestane. Slowly is building up indigestion. I loved and always ate raw fruit and veggies and now I can't. I have to eat cooked food and be very careful to go to bed with a light stomach. First thing in the morning, even when I get a sip of water it feels painful but then it goes away during the day.

  • francesca30
    francesca30 Member Posts: 63
    edited October 2022
    Options

    hi! yes. currently on Femara, on my 3rd year now. Developed gerd on my 2nd year. taking omeprazole for 2 weeks . will lessen my cups of coffee to

  • princessbuttercup
    princessbuttercup Member Posts: 159
    edited January 2023
    Options

    Sorry, it's been a while since I posted this question. After an endoscopy in October, I was diagnosed with a hiatal hernia. It's not bad enough for surgical repair, but I do need to take pantoprazole (Protonix) twice a day to keep the GERD calmed down. (Omaprazole did nothing.) I also add Pepcid AC during the day or late at night if I need it. I limit coffee to one small cup in the morning, and I've stopped eating anything that makes it worse, like orange juice, tomato sauce, onions, broccoli, lettuce/spinach (all leafy greens), corn, spicy foods, wine, soda, etc. There's not much left to eat that doesn't give me problems. :) Root vegetables and squash are tolerable, and I can eat rice, noodles, and most meats/chicken/fish. If they take my chocolate away I think I will scream.

    The GERD started while I was taking Letrozole, a drug which was difficult in so many ways. In the meantime, I'm taking a break from Exemestane. I haven't told my oncologist about this yet, and am expecting that she will just tell me there's nothing more she can do for me if I refuse to take the AI. But between the joint pain, fatigue, and not being able to eat anything, I have had enough for a while. If someone can fix the GERD then I'll revisit. Back to the gastroenterologist and the oncologoist in a few weeks.

  • threetree
    threetree Member Posts: 1,274
    edited January 2023
    Options

    princessbuttercup - I thought that Letrozole was possibly causing an ulcer maybe 2 years ago or a little more. The doctors all told me I had a stomach acid problem and told me to take stuff like omeprazole and Pepcid. All of that stuff just made me feel worse; real worse. I even went to the ER at one point because they kept talking about fear of bleeding ulcers and I was only getting worse from their suggested otc drugs. The ER dr arranged for me to have an upper GI that turned up absolutely nothing; said my stomach was perfectly normal. I had also asked the breast surgeon at one point if she didn't think it could be a hernia, as I did have a small "squishy" sort of area around my upper stomach. She looked at my most recent x-rays, and said no (she also does lots of hernia work). She suggested bone scans that I declined, as I felt totally fine other than the AI side effects.

    I then just went to my old "go to" for the extremely rare stomach acid problems I had in the past, which is DGL (I use Natural Factors and you can find it on Amazon). To me it seemed like the Letrozole indeed causes stomach acid problems, and I too had trouble with tomatoes, oranges, berries, etc., but it seemed like the dr's take on the whole thing was off, as were their suggestions for a remedy. I've gone back to the old DGL (400 mg) about 25 minutes before a meal, and I have no more problems - no side effects, etc. Since then I actually have had a small, deemed insignificant, hernia show up on a scan, but it was about 6 months ago, so maybe when the surgeon looked, there really was nothing there.

    I definitely believe that AI's cause acid reflux problems.

  • princessbuttercup
    princessbuttercup Member Posts: 159
    edited January 2023
    Options

    Threetree,

    I had thought it was a stomach acid problem, too, but my endoscopy showed that the hiatal hernia is what's causing the acid reflux (maybe originally caused by Letrozole). Will see what the GI doc says next month. I don't think it will go away on its own. (Fortunately the DeQuervain's Tenosynovitis in my left arm did go away after stopping Letrozole. That drug caused so much trouble for me.) Protonix mostly keeps things in check but I do have to keep taking it.

    buttercup

  • maggie15
    maggie15 Member Posts: 858
    edited January 2023
    Options

    I have asymptomatic GERD which caused a severe upper GI bleed and resulted in the diagnosis of Barrett's esophagus. I take omeprazole and to some extent follow a low acid diet. For the first several months post hospitalization I went with the recommendations in The Acid Watcher Diet by Jonathan Aviv, MD. I have relaxed them a bit including drinking just one cup of coffee in the morning but I always keep the recommendations in mind. The worst is the no chocolate but I sometimes cheat early in the day. Not having anything to eat or drink but water after dinner is really important. I have also elevated the head of my bed and try to sleep on my left side as recommended by my gastroenterologist. The Barrett's is slowly growing but I haven't had another bleed so I guess all this helps.

    The digestive enzyme pepsin can eat away at your esophagus if it gets refluxed out of your stomach. They have not yet developed any medication to prevent this. Since pepsin can only be inactivated by a pH over 8 I drink a glass of high pH water (like Essentia) before bed. I have never had any pain at all; it's like neuropathy where you can injure your hands or feet from lack of sensation.

  • princessbuttercup
    princessbuttercup Member Posts: 159
    edited January 2023
    Options

    Maggie, it's interesting how differently this can look in various people. I was told by my GI that I don't have Barrett's, but the reflux is just terrible sometimes. I can even get it first thing in the morning before eating or drinking anything. That's why I decided to put myself on an AI break. Will see what the Gastro and oncologist have to say soon. My oncologist didn't believe me when I said I had arm pain until a hand specialist diagnosed DeQuervain's. She (hand specialist) also took xrays of my wrist which show severe arthritis in both thumbs. (The oncologist said DeQuervain's couldn't be a result of Letrozole, but the hand specialist said yes it's been documented. Now I'm hoping that my oncologist will believe me when I show her the results of the endoscopy, too!)

  • threetree
    threetree Member Posts: 1,274
    edited January 2023
    Options

    Princessbuttercup - Just wanted to add that like Maggie15, I too elevate my head when I sleep - forgot to add that in my previous post. I use a wedge pillow. I sleep on my back however, due to other reasons, e.g. treatment side effects from surgery and more. I understand the side sleeping that Maggie described is best.

    I think the oncologists really downplay and dismiss so much - good for your hand surgeon. I've seen the conditions you've mentioned listed on Letrozole side effect lists before. Also, I've often found that rather than looking at only the side effect lists, take your symptoms and google it like, "does low estrogen cause (whatever symptom)" . A whole lot of symptoms that we on AI's get can be explained that way, when they don't show up on a side effect list, and the oncs dismiss them.

  • maggie15
    maggie15 Member Posts: 858
    edited January 2023
    Options

    threetree - GERD caused by AIs is common enough so that there is actually an observational clinical trial to see how AIs affect the gut microbiome. https://clinicaltrials.gov/ct2/show/NCT05030038

    It's very interesting to get the view of specialists other than breast cancer oncologists on AIs. My endocrinologist is not a fan because of the increased bone loss and the destabilizing effect it can have on a problematic thyroid. My gastroenterologist does not think it is a good idea since estrogen helps protect against esophageal cancer for which Barrett's is a precursor. My PCP doesn't like their elevation of already high blood pressure and cholesterol. My orthopedic surgeon agrees that AIs degrade cartilage and consequently promote bone spur growth that worsens osteoarthritis. My MO even admitted that stopping AIs won't undo the damage done to cartilage. I read a paper on the effect of AIs on cartilage at the cellular level. There is a receptor on chromosome 14 which allows the damage to take place in people who have one of four SNPs present in about 40% of the population. It would be wonderful if someday they could test for this so that those who are susceptible would know in advance.

    I understand why doctors have to be so specialized but I wish there was more communication between them. I developed a rare side effect (3/1000 chance) from rads, progressive radiation induced pulmonary fibrosis. My RO sent me to an interstitial lung disease pulmonologist who was not at all surprised this happened to me. Gastric acid/pepsin microaspiration can cause occult ILD which is then exacerbated by radiation and a host of drugs used to treat cancer. He said the GI bleed, hiatal hernia, and Barrett's were red flags I should not have done rads; a lung cancer RO would have noticed this. The progressive scarring was confined to my right lung by prednisone but since it can start up again and spread to my good lung the only treatments I could use if mbc developed are AIs, fulvestrant and elacestrant with hopefully more SERMs in the pipeline. I tell my MO that I am saving the AIs for when I might really need them and will put up with the SEs then.

    Dealing with a variety of medical conditions simultaneously is a balancing act. We have to look out for ourselves and decide on the relative merits of treatments, something that can change over time.

  • sarahmaude
    sarahmaude Member Posts: 336
    edited February 2023
    Options

    This is a very interesting thread! I'm pretty certain I've developed GERD from my Anastrozole. It took months, but I had a sore throat that wouldn't go away. I was thinking allergies or that the mild COVID I had at the end of December caused something. I mentioned it at my primary doc appointment a few weeks ago and she prescribed omeprazole. It actually seems to be working somewhat.

    My case seems much more mild than princessbuttercup, threetree, or Maggie15. The NP said that it's pretty common to have sleep related reflux issues and asked if I had a history of that. Even 9 months pregnant with twins I never had heartburn, so it just didn't occur to me. After she said that, I looked up side effects of my AI, and sure enough, that's one of them. Take a pill, add a pill. At this rate I'm going to need one of those GIANT pill sorters. Ugh.

  • princessbuttercup
    princessbuttercup Member Posts: 159
    edited March 2023
    Options

    sarahmaude, I ha to laugh at your pill sorter comment because I do have one now. So many medications! My GI has been great and said that it's possible to get to the point where I can reduce the PPI meds. Apparently pantoprazole can cause osteoporosis if you take it long enough. The answer for me will be exercise and weight loss, which has been impossible on Exemestane. I'm using my medication vacation to work on that.