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GORD / GERD / Reflux and Nissen Fundoplication

I've seen a few posts about acid reflux / GORD / GERD here recently, so I thought I'd share my recent and ongoing experience.

I've had what is described as "moderate" reflux over the past few years. The kind that you can almost eliminate with about 40mg of omeprazole once daily. That's what I used to do, and life was fine.

After my CML diagnosis, it was clear that PPIs (such as omeprazole) and TKIs (dasatinib in my case) don't mix well. The PPI neutralises stomach acid, and I believe the TKI relies upon the stomach acid to break it down properly. So, PPIs effectively reduce the potency of TKIs.

My PCRs have been OK, but after 15 months I haven't achieved MMR - the closest I've got to is about 0.4%. I want to get this much lower. This is after reducing the PPI to 20mg, then to 10mg and using some antacids to help control the reflux. Unfortunately this just couldn't control my reflux, so I felt pretty rotten with that, slept badly and in general would be putting myself at risk of serious oesophageal problems down the line. Long term use of PPIs has undesirable effects too, and I'm not an old chap (yet!) so it's not a bad idea to get off them somehow, at my age.

So something had to be done. We investigated a device called a Linx, which is a magnetic implant which helps close the oesophagus - but these are quite new and have a pretty high failure rate so it wasn't really a viable option. The gold standard is a procedure called a Nissen Fundoplication, which is a procedure which wraps the top of the stomach around the bottom of the oesophagus, creating a tighter junction which should stop acid coming up. It's a delicate procedure because anything that stops things coming up, stops them going down and obviously that can be a problem. So a very skilled surgeon is essential!

To assess suitability for this operation, a oesophageal manometry (which tests the function of the oesophagus muscle), a videofleuroscopy, which invokes a barium swallow and a video x-ray to watch the movement of the organs and finally a Bravo pH study which over 48 hours measures the pH levels in the oesophagus. All of these tests showed a slam-dunk result which made it a no-brainer to go ahead with the fundoplication.

So, on Monday this week I had it done. The operation takes the surgeon a couple of hours, and of course this is under general anaesthetic. I suffered a pneumothorax and a subsequent collapsed lung during the surgery, so ended up in the ICU for 24 hours after the surgery. It was spotted quickly so there ought to be no lasting damage at all. I've just been discharged, 4 days later after recuperating at the hospital. All in all, besides the pain of the lung problem at the start, it has been less sore than I thought it would have been (except if I hiccup or laugh - that's sore!). Most of the pain is actually in the left shoulder, due to referred pain from the diaphragm - nothing a bit of tramadol and oral morphine doesn't sort out. Breathing deeply is still sore, but it's improving. I guess I was just expecting it to be worse somehow!

I'll be on a "sloppy food" diet for the next while, ramping up to fairly normal food within 6 weeks. Getting the calories in will be hard, I think. Right now, everything is blended or already very soft (soggy weetabix, that kind of thing).

However, so far so good. There's still a reasonably long way ahead in terms of full recovery from this operation but already it's great to wake up in the morning without a taste of acid in my mouth.

But most important, I don't need to take the PPIs any more so the dasatinib can work at its full potential. That's really the reason that we went ahead with this operation.

So for others who are reading this, trying to work out their own problems with GORD/GERD/reflux I hope my experience may shed a little light on some options. I'll post again in a couple of weeks with an update as to how the recovery is going. I guess this surgical option is not for everyone - it's a fairly drastic step and a serious enough piece of work to keep you in the hospital for 4 or 5 days - but for me, it seemed like the right thing to do.

David.

Dear David,
Thank you for your post, it seem to be a common problem with the TKIs and it good to know that taking PPIs can influence our resultant. I actually completely stopped PPIs, they don't make me feel better and I by changing the hours of taking Nilotonib, it seems to get better. Please keep us posted of your progress,
Thank you

Hi David,
good to see you have recovered well enough to update us here. It sounds like a pretty complex operation - and you certainly could have done without the extra complication of a collaped lung- but I am so glad you have improved so quickly and can eat even sloppy foods ;o)
Try not to laugh too much, although it must be such a relief not to have the 'acid' problem I imagine you find you can find humour in almost anything.

Really pleased this has worked for you and hope your PCR results will be deeper in future.

Best wishes,
Sandy

Well, it's been to weeks since I underwent the Nissen Fundoplication. Bear in mind that they say 4-6 weeks is needed before going back to work or resuming normal activities, so all of this is quite early in the recovery journey.

The good:

- I don't need to take PPIs any more. I don't even need antacids. The acid burn is just gone. Great result, so far. This is the only reason I had this operation, so this is great. So far, so good.
- I didn't spend very long on liquidised food. Straight to fish and mashed potatoes really. Pasta, and anything else that's moist is fine.
- Off the painkillers. I only really needed them for a week. Pain really was pretty minimal, and it was much easier than I was expecting.
- I was told swallowing might be difficult following this operation. It's not.
- I can get back to the gym next week.

The bad:

- I have a very mild sore throat, this will pass as the oesophagus repairs itself apparently
- It's hard to eat anything in volume. Getting the calories in is hard. I've lost 5kg so far, with more to come I think. Sometimes there's a 'dumping' problem, where food is ejected from the stomach into the intention too fast, which makes you feel clammy and ill. Avoiding liquids with food helps.
- Flatulence is epic, as any air you swallow or other gas inside you can't escape out the oesophagus as before - so there's only one other route out. I'm told this will calm down in time. My wife was relieved to hear this. The whole stomach and digestion system is a bit messed up.
- I have a slightly sore abdomen. Sit-ups are not yet on the cards, but other than that it's business as usual
- Sleeping in any other position other than on my back is a bit sore. It's best to sleep sort of sitting up, bolstered by 4 or 5 pillows. This is getting easier, and in a couple of weeks I reckon I'll be back to normal.
- Fizzy drinks are off the menu - perhaps permanently. Good thing I prefer Guinness in the pub rather than lager, anyway - although I haven't tried any alcohol yet.
- No meat yet either. But I should be able to start eating some again in a week or two.

Overall, I'm delighted with this procedure so far. It's taken away the acid problem, which allows my TKI to work better and it's lovely not having heartburn and an acidic mouth all the time. The cons are all really small problems in the scheme of thins, and all of them will get much better in time - so they're massively outweighed by the pros.

In short, based on my experience so far I'd recommend anyone with severe reflux to look into this as an option - not just those on TKIs who see an even bigger benefit.

Hopefully in a couple of months, the small cons will have receded. I'm really pleased I decided to do this.

David.

Hi David, you must be very pleased with your recovery which as you say is quite quick. To mitigate your weight loss maybe you could try eating natural full fat 'live' yogurt (high in calories and easy to digest) plus maybe some mashed bananas (also high in calories and also potassium).... and mashed avocados (high in calories plus potassium and magnesium)- plus other high calorie fruits like mango/papaya which make great fruit smoothies. Meast is hard to digest anyway so maybe hold off on that for a while. I am not sure you should mourn the fact that you can't drink 'fizzy' drinks- they never did do anyone any good ;o)

Great to hear you have benefitted so much from this surgery- I am sure your quality of life will improve as well as your response to dasatinib----look forward to you seeing a further reduction in BCR-ABL.

Best... Sandy

I've become pretty good at making fruit and yogurt smoothies! Though I think my cheap Argos blender is about to give up the ghost - you get what you pay for, I guess. It's funny going to the shops and looking for the most calorie dense foods - I'm usually the type to be looking for the balanced option!

I'd never have thought it, but I really don't miss the meat so will probably reduce the amount of that I do eat a good deal in the future.

The only fizzy drink I think I will miss is the odd bottle of lager!

Very pleased for you that this has worked out well, David. I know how thoroughly miserable it can be with constant reflux, and I can well understand your obvious concern to make sure dasatinib can do its job for you. Good luck with the continuing recovery.

I thought I should point out for other readers, however, that not all TKIs are incompatible with PPIs. I am on imatinib and that is fine with PPIs - indeed, I take 10mg omeprazole and it keeps my own reflux - which was pretty bad when I started on imatinib - under control. My imatinib plasma levels have always been excellent, and I've been PCRU (as it used to be called) for over 4 years. Given a low dose of omeprazole works for me, I think this is the way to go for me anyway rather than an operation. None of my various doctors has ever expressed a concern with long term, low dose usage of omeprazole and as you say, it reduces the risk of other potential issues. Obviously my situation is different to yours - I might indeed think again if I needed high dose, and certainly with other TKIs omeprazole can be problemmatic.

I am hopefully about to start the DESTINY trial shortly and that may allow me to cut down the use of omeprazole over time. But for now, it is doing an excellent job.

Good luck and I hope everything settles down. Incidentally, my father had this operation must be nearly 20 years ago and his did indeed settle down. He never really drank beer but it didn't stop him drinking wine....

Richard

Indeed is seems imatinib does seem to play 'nice' with PPIs compared to dasatinib - unfortunately of me imatinib didn't play nicely with e!

I think imatinib is the only TKI for CML that is OK with PPIs. The package inserts of bosutinib, dasatinib, ponatinib and nilotinib all advise against their use. I wonder what the underlying difference between them and imatinib is - anyone know?

I only realised recently that some people's reflux seems to be caused by the TKI. Mine was probably further aggravated by it unbeknownst to me.

David.

Hang in there mate.

In the past I had severe problems with weight loss (dropped to less than 6 stone!). In my case when I was in acute stage and prior to having a bone marrow transplant and also post transplant I couldn't swallow anything other than liquid because of ulceration of more or less the whole of my gastric tract and chronic diarrhoea & sickness - coupled with chemo and an enlarged spleen that took the space of my stomach - such fun!

I did a variety of things to get calories in so I gained weight sufficient enough to withstand the rigours of transplant and then as part of my recovery post transplant:

I used 5 pints dry milk powder (don't know if that's still available - but any dried skimmed milk powder) and mixed that with whole milk to really boost the calories.

But most significantly I used a soluble and tasteless product called maxijul. I stirred that into all my drinks and when I was eventually able to move on to things slightly less liquid used to have jelly made with it in the water and ice cream, scrambled eggs, porridge, soggy weetabix (yes I also did that!) soup etc with it stirred in. I managed to get to my optimum weight to be able to undergo the transplant and then post transplant my weight plummeted and I did the same again and made a significant progression to enable me to get well.

The unit where I was treated actually got my partner to do a leaflet for other patients with tips and recipes etc on to help them with diet and cancer care and specifically to help when there'd been massive weight loss.

Hope this gives you some ideas. Good luck.

Thanks for the ideas. Thankfully, the weight loss has slowed down a good deal - just 0.4kg in the last week. I'm able to eat much better now, so finding it easier to get the right nutrition. I reckon in two weeks time I'll be eating better again and should put a stop to the loss.

My belt buckle is seeing belt holes it hasn't seen in a long time!

This was very interesting to read, thanks.

I've had reflux pretty much since as long as I can remember (definitely as a child). It's not so bad as to cause pain, and a gastroscopy a few years ago showed no ill effects around age 45. There is, I believe, an increased risk of long term issues, some of which can be serious, however my dad is 80 and has always had it, my brother and sister both have it and I seem to have passed it on to my kids!

As I'm so used to it, I think I'd probably just continue to live with it rather than go through what you have described - it may be far less troublesome than you describe, but very interesting to hear from someone who has had it 'fixed'. I tried Omaprozole for a month but it gave me terrible stomach aches so I just gave up worrying about it.

On the flatulence side, Dasatinib gave he terrible problems for about 6 to 9 months after starting, but this has definitely died down now.

I also found that although I got to PCR 0.17% after 15 months, my 18 month was 0.2% and my 21 month was about 0.16%. After some concern from the consultant that I hadn't hit MMR after nearly 2 years, it turned out that without any changes, the 24 month was 0.035% - something was clearly holding out for 9 months before finally succumbing to the dasatinib. It may not be the PPIs causing the issue, it may just be your body's response.

I'm now waiting for the next PCR to see if the downward trend carries on, but at least I've got to MMR now and hopefullyt can stay there!

Rod

Hi David,

I read your posts about your acid reflux and the operation that went with it. I hope you are getting better and are not having too many additional problems with that. Interesting to read about this operation!

To cut my long story short, I was diagnosed with CML a few months ago and am on Tasigna (nilotinib). The last few weeks I have been having stomach problems and quite strong stomach ache immediately after eating food. I had to lie down today for an hour and felt almost sick. It was accompanied with a feeling of being very tired.

I have a small stomach ulcer which I am treating with Pantoprazol (40mg daily). I am taking this about 1hr before taking Tasigna. I have always had reflux issues and always used Pantoprazol periodically to get it under control. Could my stomach ache after eating be related to taking both Pantoprazol and Tasigna together?

You suggested you thought they did not mix well, although my doctor has not said I should avoid using it. Any advice/thoughts would be great!

Dav

Hi ...

I'm not having too many problems, and the ones I do have (gas, bloating) are getting better every week. So far, the results of the operation have exceeded my expectations and I am really pleased I did it.

Pantoprazole is a proton pump inhibitor (PPI). This is similar to the medication I was one (omeprazole). With the exception of imatinib, as I understand it, PPIs are really not compatible with TKIs. The guidance from the drugs companies is to use shorter term acting antacids as a means to control acid problems, rather than long acting PPIs. But lots of patients find that this isn't enough to control their symptoms (like me!).

From drugs.com : "Chronic use of proton pump inhibitors or H2 antagonists may significantly decrease the oral bioavailability of nilotinib. The mechanism is decreased solubility of nilotinib due to increased gastric pH. Nilotinib's solubility is pH dependent and it is insoluble at a pH of 4.5 or higher."

Along with Sandy, I really think you need to challenge your doctor on this. It's not totally impossible to take PPIs with TKIs - they are not necessarily dangerous together, but the PPI can significantly reduce the effectiveness of the TKI ... and I know where my priorities lie. The options we considered for me was to (a) have the surgery and take 100mg dasatinib, or (b) keep the PPIs and take 140mg of dasatinib. I prefer not to take more of the TKI than required for various reasons, and I was pleased to come off the PPI too.

I decided to go the surgical route to fix my reflux problems. Before, my PCR results were not terrible, but were stubborn and I am not in MMR and my doctor and I felt that this could be related to the PPI. I am awaiting a PCR result which was from blood taken a month after I came off PPIs - maybe too early to see a difference, but maybe not? Long-term use of PPIs isn't great in any case, especially at my relatively young age where I would need to be on them for a long time. I was told by the surgeon that performed my fundoplication they can cause bone problems later in life.

The particular procedure I had is great for reflux, but I don't believe would do anything for an ulcer as what it does is stop the acid from entering the throat, but of course the acid would still be in the stomach agitating an ulcer. I think it would be worth asking your doctor for a referral to a gastroenterologist to discuss alternative treatments for your ulcer which are more compatible with your TKI.

David.

I'm resurrecting this old thread of the benefit of someone who might stumble on it in the future if looking for this operation and how it works with TKIs / CML. I thought that a longer-term follow up message might be useful.

So, one year after the Nissen Fundoplication surgery I had that is well documented in this thread, I can honestly say it was a great decision.

Pretty much every problem I was having in the early days has gone. Hardly ever get any bloating unless I've over-indulged too much! Fizzy drinks are still out, but that's no big loss.

The key thing is that I no longer need to take any medicine to control stomach acid, which means my TKI is working better. No coincidence that my PCR has gone down to 0.02, whereas it was quite stubborn before this work.

I would say that my expectations, and even my hopes for this operation were exceeded. Couldn't be happier with the result.

If anyone is struggling with very bad stomach acid, and concerned on how medicine that treats that might interact with their TKI this procedure is definitely something to look into.

David.

Such good news, David and also your latest PCRs. You must feel you have a new lease of life! I'm sure your posting will reassure any others suffering with stomach acid and wondering abut the operation,

best wishes,
Chrissie

Hi David, thanks for updating us on your great results with what seemed like at the time, quite an invasive procedure. It is great that you found an answer to what must have been quite distressing symptoms- and also with such a great bonus! your downward moving PCR result.

Sandy

It is an old thread but very helpful in that it is so close to my own circumstances. I take dasatinib 100 mg at present, I am just within MMR after three years. 

My heartburn a couple of weak ago got so bad that the pain was moving between my chest and my back and I visited casualty. At first they were concerned about a high amylase level but after many tests they concluded that reflux was the sole problem. I have heartburn most days with occasional intense episodes. What triggers a shift towards surgical intervention?

The hospital will not permit a lansoprazole dosage above 30 mg daily. My GP would like to do 60 mg.

For me the surgical intervention was self led. I am a big believer in patient-led care! It also helped that I had insurance which meant it was easy tog et to see a gastroenterologist. 

The rationale was fairly straightforward:

  • My GP had noticed redness in my throat and had me on omeprazole
  • I was diagnosed with CML, and when put on dasatinib this clearly had an undesirable interaction
  • My PCR was quite stubborn above MMR for some time
  • The omeprazole wasn't even close to eliminating GERD symptoms, even with strict dietary changes
  • Left unchanged I might not achieve MMR
  • If omeprazole withdrawn Barrett's oesophagus more likely, along with throat cancer in the long-term
  • Also omeprazole is not great for your bones, and I was in my early thirties so long term not great to stay on it

So the question was simple ... how do we eliminate proton pump inhibitors from my daily routine? Antacids such as Gaviscon at the 'right' times of day would not be enough, so a surgical fix was the only remaining option.

I had to wear a monitor in my throat for about a week and press a button whereby it would record I had experienced a reflux symptom. You needed something like a 60 or 70% "symptom association rate" for surgery to be a good option, and mine was 100% so the gastroenterologist said it was a no-brainer. After that, it was just down to decide what surgical option to go for. The Nissen is the gold standard, but there are others less tested methods such as a Lynx (or maybe Linx?) which is a magnetic system but we went with the tried and tested approach. They also fixed an unexpected hiatus hernia while in there!

David.

Hello David. I cannot thank you enough for this posting and the care you have taken with writing it.

My situation is very similar except that I am 65 years old. My dentist has noted substantial erosion of my back teeth which is caused by long-term acid erosion rather than by grinding. I am taking 30 mg once daily of lansoprazole and 100 mg of dasatinib. I am hovering close to  MMR. 

I no longer have health insurance so I am not totally in the driving seat. I will discuss with haematology today and with my GP again mid-month. I suspect that I need a referral for other inspection.

Best wishes, Stephen