Acid reflux problems continue on

[elinda45]

Thank you for responding to this. My problems are continuing and had a vomiting again this week. As far as food goes I've found anything in particular that triggers an attack. I'd only had a jacket potato and green leafy salad this time, something I'd had the previous week without any problem.

I did have a gastroscopy as the surgeon I had for breast cancer is also a GI surgeon. I am worried about the amount of meds I'm taking especially the domperidone as it says to only have them for a short period of time and it's now nearly 6 months.

When nothing shows up in the gastroscopy it's really difficult. I'm going to press the issue again soon with both GP and surgeon.

Elinda

[Guest user]

If you are really desperate I would ask for a referral to a consultant gastrologist. Also, keep a careful note of everything you eat and drink and see if there is any pattern to the vomiting, then try omitting one food at a time from your diet to see if it helps.
I suffered irritable bowel most of my life and found garlic, onion, spices, lettuce and fats would trigger attacks. Strangely since recovering from chemo many of my old gastric problems have improved quite a bit! Hope you feel better soon.

[Guest user]

Hi Elinda,

Yes I had oral thrush 4 times out of the 6 lots of chemo so it's possible that it then went internally.
The anti-fungals made me feel just a little queasy but nothing very much so I was able to continue taking them. Also found Randitidine (Zantac is the other name), not a problem so took those alongside the anti-fungals.
Lynn x

[Guest user]

Hi Everyone, I had the same problem whilst on Chemo. It was crippling and I was on Lanzoparazole. Like Lynn, I sometimes thought it made me feel worse.

Elinda, I wasn't sure either if you could take Gaviscon etc whilst on the Lanz, but I checked with the Doc and there was no problem and I did find that this helped enormously.

However, once the chemo finished, the symptoms went almost immediately and I stopped the Lanz and now don't have to take anything for it. I do keep Gaviscon in the house though just in case and I've bought the sachets so I can take one with me when I go out. I got the Gaviscon on prescription from the GP which meant I didn't have to pay for it as I'm over 60. (A small bonus!)

Otherwise, hope you are all well today and that you have a happy and peaceful weekend. Lots of love, Dianne x x x

[elinda45]

I'm not sure mine is caused by rads because I think that probably would have shown up when I had the gastroscopy. In fact there was nothing not even any inflammation yet that night I had another back attack with vomiting. Really odd.

I'm going to speak to my GP again and see if I can change the meds again. I've been taking some rennie tablets during the day as well as the lansoprazole and domperidone this week as it's been so bad and they have helped.
The pharmacy said I had to wait two or three hours between taking these and any other meds which isn't helpful as I have domperidone half an hour before food and often need something after the meal. I am also a bit concerned that they make affect the absorption of the tamoxifen I take in the evening.

Elinda x

[peacock]

Hi again

Following my CT scan, I was also told that I have some damage to the pleural/lung/oesophagal area caused by rads but that it wouldn't repair itself and as it was very slight shouldn't cause me any problems.

Elinda, my doctor gave me the gaviscon and told me to take a dose with each meal, however, I just take it when necessary, ie. if I have an extra amount of heartburn/indigestion or reflux.

Eating little and often also seemed to help me, but I put my improvement down to the tablets which I continue to take.

Hope everyone manages to find some relief soon from this horrible SE

[elinda45]

Hi Lynn

Thanks for joining this thread and what you've said is really interesting. I'm finding that omeprazole and lansoprazole aren't doing much at all.
I've not even thought about the possibility of thrush in the gastrointestinal tract. Can I ask if you had oral thrush too?
Also did those antifungals make you feel very sick?

Elinda x

[Guest user]

Hi Elinda and All,
Hope you don't mind if I join in on this thread. I finished chemo in January and like Catflap had particularly bad indigestion, pain, burping and acid reflux with the tax. I tried all the ant-acid tabs, omeprazole, Lanzoprazole (which I found actually seemed to make things worse). Ranitidine I think may of helped, but it wasn't until my GP suggested that internal thrush may be a problem, caused by the chemo. I had it treated with Fluconazole and then Itraconazole to try and eliminate it if it proved to be this. Thought it hadn't worked until a couple of weeks after the last treatment and then all symptoms went. Don't know if it was due to this or just luck but I am now completely free of symptoms.
Just a thought.
Hope things improve for you soon.
Lynn x

[elinda45]

I have found a real pattern with the acid reflux. Although it's there all the time I only have the severe vomiting attacks within the first 3 days of every month. I've kept a record for the 4 months and it can't be coincidence, I was astounded when I looked up the dates to tell my GP.
The Onc thinks I might be menopausal (possibly temporary) but this seems very like a menstrual cycle - I've had a hysterectomy so haven't had periods the past 3 years.
Has anyone else had worsening of symptoms around a certain point in their cycle such as just before a period?
Elinda x

[crispy]

Hi elinda

My reflux problems got worse once I started rads. I'm uncertain as yet whether the problem is temporary (may know more after a gastroscopy later in the month)

Crispy

[elinda45]

This is very useful to know. I am back on my lansoprazole and have been reluctant to add back in the domperidone but the acid keeps making me feel queasy. When to neighbours for lunch yesterday so had to take domperidone first.
I wasn't sure if it was okay to take gaviscon as well as domperidone - Peacock were you told by doctor that was okay?

Crispy, do they think that radiation damage is temporary? I'm wondering about that too. Although my acid reflux started after chemo it got really bad once I started rads.

Anyone else had teeth problems? the acidity is taking enamel off some of my teeth.

bw, Elinda x

[crispy]

Dear all

Thanks for this post. i had posted about post radiation reflux earlier today.

I had started with reflux the day of my first chemo, increased my omeprazole to lansaprole during taxotere and came off soon after chemo only to restart during rads. I too have restricted my diet finding alcohol, fatty foods etc are difficult. Also experienced the coughing at night.

CT scan to rule out lung mets as a cause of coughing showed oesophageal thickening and a medical oncologist has refered me to a gastroenterologist. gastroenterolgist thinks my problems are related to post radiation damage and increased my omeprazole to 40mg twice a day and introduced dromperidone with each meal. His rationale for both drugs was that omeprazole reduces the acid secretion in the stomach but gastric juices (also acid ) are still produced. He has added domperidone to increase the speed that the food passes through the gut and reducing the risk of gastric juice reflux. He also said that dromperidone may take 4 -6 weeks to take maximum effect.

hope this is of some use to others.

Crispy

[peacock]

Don't worry ladies, I join you too! I had all my treatment in 2008 and finished rads in Feb 2009. About 3/4 weeks after finishing rads I developed a cough, especially when I ate something or at night, coughing, coughing, really annoying.

In october 2009, after lots of tests I was diagnosed with reflux as the acid regurgitates and causes coughing as well as a burning sensation.

I have been taking domperidone 20 mg x 3 per day before meals and another tablet called Pariet 20 mg (similar to Omeprazole) x 2 per day and my coughing all but stopped after a couple of weeks. I don't have too much of a problem now and if I feel more acidy I add a couple of sachets of gaviscon into the day which also seems to help.

Hope this helps.

My only problem now is that I am afraid to stop the tablets in case it all starts up again.

[lizcat]

Hi Elinda,

My onc, surgeon and all the nurses told me from day 1 that reflux/heartburn was a common side-effect of chemo and that I would find certain foods etc would make it worse. You're sadly not on your own but I find it's easier knowing it's a se and not something worse. I'm 3 yrs on and my mum is 8 yrs on and still gets it - sorry !!!

Liz

[elinda45]

Thanks Catflap this is reassuring. Also good to know that you were told it was a common problem with chemo. I have felt so down today with it and wondering if I'll ever feel well again so nice to know that things can improve.
I don't drink alcohol at all now and have cut out all juices as they are terrible. I only have coffee on a rare occasion too. Fatty foods are a big no go.

Did they tell you what happened during chemo that leads to the acid reflux? My GP says that I'm still just producing too much acid. When I asked my consultant what caused it he shrugged, said he had it last year and then it cleared up.

Elinda x

[Guest user]

Hi Elinda, I am now 3 yrs on, but I can sympathise with you greatly as I had really bad acid reflux during Taxotere. I wasn't sick but the stomach pains were so bad that I phoned my chemo nurse to tell her that I had ruptured my stomach.

Unlike you, both my oncologist and my chemo nurse told me that it was a common side-effect of chemo. I was on omziperthingy tablets too (sorry can't remember the full name!) but they also gave me Antepsin liquid (bit like gaviscon) that I took constantly. Good news is the situation has improved over the years but I still do get problems. I find that I can't drink coffee or orange juice at all as this really sets it off, or drink alcohol on an empty stomach or really rich food and I keep gaviscon sachets in my handbag to help.

Constipation - hmmmm yes, I suffered severely with this (and I am afraid, I still do but not quite so bad!) I don't know whether it made a difference or not, but I used to take Aloe Vera liquid (foul stuff!) in the morning but it is meant to soothe the stomach and it did seem to help the constipation.

Hang in there, hopefully it will improve.

Mxx

[elinda45]

the pain of the acid has proven too great and I'm back on the omeprazole. I keep reading about not staying on these meds for a long time but I've already been on them months.
Definitely going to speak to GP about a double dose and see if that gets it under control so I don't need domperidone as well.

Sorry to hear how many others are having problems too. Hope this settles down for us all in time.

take care
Elinda x

[elinda45]

it hardly seems to be a coincidence that we've started having acid reflux since chemo. I wonder why the docs don't realise this. I would really like to know what it is about the chemo that causes this. Has anyone asked their surgeon or Onc about it?

I had a day yesterday off my omeprazole. I took slippery elm with each meal which did help but by the evening I was feeling rather unwell so I took a couple of domperidone. I feel so nervous about any changes but not at all sure the omeprazole is doing anything but cause constipation.
Fingers crossed.....

Elinda x

[Guest user]

Hey there . I am on Lansoperazole and have been since mid chemo ( i finished in september). If i forget one the acid rises and i get sores on my tongue. Last week i had a 3cm, green,deep sore along my tongue and i couldnt eat for 7 days. It then set of oral thrush... I have to be careful what i eat and i never had this before all this. Its been worse since i started tamoxifen too.

It is the treatment that's caused it and i have to pray i dont have another episode like this last one as i just cried and cried with pain and ended up taking codeine to just try and eat something.

Good Luck

X

[lizcat]

Hi Elinda,

Saw your post earlier and thought I would add my experience even though it's nowhere near as bad as yours in case it helps any.

I'd never, ever had reflux/heartburn until I had chemo (had that first). It seemed to ease a bit afterwards but then came back and has periods of flare-ups, some worse than others. I've never been sick but have coughed so much, usually at night, I felt I wanted to - sorry about the description but you'll know that feeling I'm afraid.

I'm on bishphosphonates for bone mets and they can worsen the reflux but I try to drink plenty while they give me the drip each month. My family all suffer reflux and my parents have ranitidine for it, my OH has motilium. I have resisted the 'medical' tablets and have the slippery elm tablets which help enormously - I just chew one when needed as it's not every day. So, I hope they work for you too.

Sorry can't help any more.

Liz

[elinda45]

Thanks Lulu, forgot about checking NICE guidance. Definitely not being treated as per the guidance so I will have to talk to my GP again.
I think that my GP and consultant are getting totally fed up with me. I've had problem after problem since starting the breast cancer treatment and seem to seeing one or other of them every few weeks.

It's ridiculous really, I used to be a nurse, have recently had jobs where I've had to do conference presentations etc but I feel like mush now when I go and talk to these people. On top of that my memory is now atrocious I think 'cos of the tamoxifen and fact blood tests now say I'm menopausal.

Elinda x

[Lulu34]

elinda why not speak to your gp about increasing the omprazole to 40mg to see if that helps.... alternatively there are other drugs for GORD which may suit you better... lansoprazole is quite popular

but you may benefit from adding something like ranitadine as well...

here are some guideline bullet points from nice...
http://www.cks.nhs.uk/dyspepsia_proven_gord#-323460

Lulu x

[elinda45]

Hi all

I'm only taking tamoxifen plus drugs for the acid reflux - 20mg omeprazole and 10mg of domperidone 3 to 4 times a day. I really don't know if omeprazole is doing a thing as I have the vomiting attacks when I'm taking it.

It's not all the time thankfully, but usually two or three times a month. I'm completely washed out the next day though. I do have an acid taste often through the day but certainly badly in the morning. I've even suffered tooth decay from it - really rapidly.

Yesterday I bought some slippery elm tablets from the health food shop. Don't know if they'll help or hinder. I'm trying stopping the other things. Possibly a mad thing to do but keep taking tablets that aren't working seems mad too. I think the domperidone does help quite a lot but I gather you can't stay on them long-term.

bw, Elinda

[Lulu34]

my last chemo was in nov and was put on omeprazole about aug for reflux which actually got worse after chemo finished ad dose which started at 10mg then wet up to 20 had to be increased again to 40mg on finishing treatment.

since about may the dose has been reduced back to 20mg and a couple of weeks ago i thought id try with out it for a few days.... bad decision was really awful with throat burning and feeling sick after missing about 5 days of tablets so had to double up the dose again to get it back under control... i can go a day without a capsule without too much problems but any longer than that and it starts up again.

elinda your situation sounds awful... i would hate to keep being sick all the time... what medication are they giving you to help control it?

Lulu

[highball]

Hi - you're not on bisphosphonates for bone strengthening by any chance? I've had endless problems with sore throats probably caused by 'silent reflux' since being put on these for osteoporosis (made worse by Arimidex). I've exhausted all the oral bone strengtheners and can't tolerate any of them. I would have thought the medics would have made the connection if you are on this, but just a thought.

[tors]

I am really sorry I have got no ideas but wanted to say it sounds horrific for you and really hope things improve soon. How can it not be chemo or tamoxifen related tho? Would be too coincidental surely?

[elinda45]

Hi all

Some may remember I posted a while back about having severe acid reflux problems which started a few days after my last chemo in October. I was put on omeprazole but kept getting attacks two or three times a month which included vomiting for hours. I've also suffered from very bad constipation since April something I've never had in my entire life. I have to take syrup of figs daily now.

I had a gastroscopy which was completely clear. No hiatus hernia and no raised acid which I think is a sign of h. pylori. Great except that night I had another vomiting attack and then two more that week.

I now have a constant taste of acid and I am extremely careful what I eat. I have been taking domperidone as well which really helps. If I miss one of the those before a meal I'm in trouble and my food doesn't seem to pass through. I can vomit undigested food 8 hours later!

When I ask can the chemo have caused damage I get a no I don't think so. When I ask is the constipation related, it's no I don't think so. When I ask is it the tamoxifen I'm told it's not likely.

Any ideas anyone?
thanks, Elinda (the desperate!)