Tamoxifen v Acid Reflux

[Calamintha]

Hi All I have been clear from hormone related breast cancer for 3 years now. I am 62 & post menapausal . I changed medication from anastrozole to tamoxifen last month to try to help slow my osteopenia, as I do not get on with bisphosphonates. Unfortunately it appears to have aggravated my hiatus hernia and my acid issues are occuring at night and other times ie not just with meals. I can't take omeprozole. The oncologist said different brands of tamoxifen might help but to give each one 3 months before changing. I am also now suffiering from moderate menopause symptoms which he said may happen, but they are making me tired due to disturbed sleep. My anxiety appears to have been negatively affected as well. Any advice, tips, thoughts would be welcome, including what I should and shouldn't be eating. For example grapefruit, citrus peel and tumeric are apparently a big NO with Tamoxifen Many Thanks

[smithtennyson]

I came off Anastrazole after 9 months as it made my Osteoporosis worse. The oncologist put me on Tamoxifen, the cramps that I was getting were unbearable through the night and waking me up, although I didn't get reflux with them, BUT I'm on lanzoprazole, which made me wonder if you could take them rather than Omeprazole ? The oncologist also gave me Citalopram for the hot flushes, but the first time I took them, threw up all night, so I gave up on those too! Its now a year in total since I've been on and off difference tablets and am due to see the Oncologist next month, but again I have come off Tamoxifen. I feel 100% better both for no cramps, pains from Osteoporosis and acid reflux. I have also had a few good nights sleep, apart from an odd hot flush through the night. I know women who are in their 80s, still going and had lumpectomies in their 20s and never took anything afterwards, I wonder if its worth forgetting mine altogether, and enjoying what life is left? Also are you on alendronic acid for your osteopenia as I wondered if they irritate your acid problem?

[Calamintha in reply to smithtennyson]

I can't take Alendronic acid. The crippling joint pain was unbareable. Risondrate wasn't much better. Not sure about the lanzoprazole, as I was told all PPI's make osteopenia worse, which is why I had to come off them

[smithtennyson in reply to Calamintha]

I just feel that my Breast Doctor, the Oncologist and the GP are all telling me/giving me different things, which is why I have come off them all. I wasn't told PPIs made the 'osteo's' worse, although I don't take them on a regular basis. I was also told that I couldn't have Naproxen anymore for the pain as 'they say' it affects my asthma,(which it doesn't) but I can't take codeine or tramadol, so I'm stuck in pain with paracetamol. How long have you been on Tamoxifen? When are you due to see the Oncologist again?

[Calamintha in reply to smithtennyson]

I find the same; the professionals all say conflicting things. It makes descision making so hard. I've only been on tamoxifen a few weeks. I have other issues with my neck causing great pain sometimes and I struggle with pain relief too. Paracetamol does basically nothing. I won't be due for another review unless I have additional problems.

[weathervane]

I find Gaviscon Advance is of help ( on prescription) , i also sleep more upright on my back. Chocolate is a big trigger for me , also onions and garlic. I hope things settle down for you and you can enjoy Christmas.

[Calamintha in reply to weathervane]

Chocolate ! sadly one of the worst.... I'll look into "advance" but ordinary gaviscon makes no difference to me. Rennie work well, but I worry about what a safe number per day is, or indeed what longterm use will do. Long term PPI is no better as they can cause all sorts of horrible issues. I've raised my bed on bricks, which initially worked fine. I've only had the night acid problems since starting the tamoxifen so I am presuming theres a link. I really wish I could sleep on my back (for several issues) but sadly I can't

[weathervane]

I wonder if you are on Tamoxifen a bit longer then it might settle?? The Gaviscon Advance is strong than normal Gaviscon, worth asking your gp about it . Other than that maybe avoiding trigger foods if you can identify them and eat little more often. It is an awful unpleasant problem 🤗

[Calamintha in reply to weathervane]

thanks

[smithtennyson]

I forgot to say my Oncologist said that I could take Tamoxifen every other day, rather than daily.... that might be due to the lumpectomy being smaller than first anticipated (which I swear was due to Anastrazole reducing the size of the cancer) It was Grade 2 HER negative ER+, if it helps

[Calamintha in reply to smithtennyson]

Mine was 8mm grade1. sentinel node negative. ER8. HER2 negative I have no idea what it means though.....

[marra159 in reply to Calamintha]

HER2 is another receptor that makes the cancer more aggressive, so if you’re HER2 negative, that’s good news.

[smithtennyson]

Fortunately it was the lowest grade, and it had not spread, but I'd mention taking them every other day and see what the Oncologist says, especially if you have been on tablets already for 3 years.

[Happyrosie]

you said, Calamintha, that the professionals were giving conflicting advice. Puts you in a hard position . If it was me, I’d sit down and think: who do I trust most? What’s the worst that can happen within each set of meds? Are there alternatives? If your doctor’s practice has an associated pharmacist- in the UK many groups of practices employ one or two - then that person might be a good source of information. Your docs receptionist would know.

[Sheppie]

Hi. Sorry you are having so many problems with side effects. I am in my 4 year post mastectomy. No chemo or radiotherapy needed. I was asked at time which drug I would like to take. I went for Tamoxifen. Have seen many people on this as Practice Nurse. Not to many complaints. I was already on Omeprazole so haven’t had any side effects re hiatus hernia or indigestion. Have one more year to go on Tamoxifen. Take my Tamoxifen at night with Omeprazole and Atorvastatin. Looking at other comments Gaviscon Advance may be helpful. I hope you have a good Christmas.

[Syd1]

I got a hiatal hernia and esophagitis from throwing up so much during chemo. I tried the AIs, too painful, was switched to tamoxifen. I was on Omeprazole for 2 years, it didn’t help at all. Now I’m on nothing, I just couldn’t take it. A functional medicine dr has me taking apple cider vinegar with honey first thing, then gastric supplements before meals. I just started so I don’t know yet, but I can’t sleep at night from the acid reflux.

[Calamintha in reply to Syd1]

I do hope it helps. Let me know how you get on. x

[smithtennyson in reply to Syd1]

When you say you are on nothing, do you mean you stopped taking the tamoxifen too please?

[Syd1]

yes I stopped the tamoxifen, so now I am on nothing. I got weary of the side effects, especially now I need a d&c due to endometrial lining build up. I had an aggressive cancer, but now I feel so much better off the meds. I’m scared but I feel better

[pinkMarshmellow]

For me, at least the sleep issues eased some when taking it at night rather than in the daytime. The packaging says no grapefruit or citrus peel. So avoid commercial orange juice etc. And drink lots of water. I ended up moving on to Letrozole following removal of the ovaries and that seemed to give me fewer side effects than Tamoxifen. Good luck x