Have you experienced occasional difficulty swallowing food while taking Imbruvica?

[lizfuccillo]

Swallowing Issues and Imbruvica

[Hidden]

do you have acid reflux issues.

[lizfuccillo in reply to Hidden]

yes!

[Hidden in reply to lizfuccillo]

when my acid reflux gets too bad for awhile-lesions form on sides of esophogus and make swallowing difficult.

Imbruvica is know to increase acid

[cllady01 Former Volunteer]

liz, I am not taking Ibrutinib, but I have the occasional difficulty swallowing some foods.

I have had a recent episode and have seen my Gastroenterologist. He will be stretching my esophagus (Endoscopy) in a few weeks. He said the problem (and I have had this and had the endopcopy before) can be scar tissue in the esophagus from stomach acid, as IVFN has suggested.

Because, that is so for me, does not make it so for you, however. It would be a good thing for you see a Gastroenterologist.

[lizfuccillo in reply to cllady01]

Thank you for the information. Good luck with your Endoscopy.

[PaulaS Volunteer]

Hi Liz,

I've been on Ibrutinib for 2 and a half years. Over the last couple of years I've found myself eating more and more slowly, and food often seems to stick in my throat.

I've had acid reflux for many years, and wondered whether this had caused scarring and narrowing of the oesophagus, which could be causing the problems with swallowing. If that was the case, then a simple stretching of the oesophagus would give relief, as cllady01 has described.

However, a gastroscopy showed that this was NOT the case. They then did an oesophageal manometry test and 24 hours pH monitoring. I had a tube put through nose into stomach, swallowing tests done, then I went home with the tube taped to my nose and battery unit round my waist for the next 24 hours!

“... oesophageal manometry is a test that measures the pressure activity within the oesophagus and the sphincters (ring like muscles which close a natural orifice or passage at either end of the oesophagus). The multi-pressure sensor catheter (tube) has sensors situated at 1cm intervals and allows for measurement along the entire length of the oesophagus and sphincters at each end simultaneously (please see diagram). This enables an assessment of how well the muscles in the oesophagus and the sphincters at either end are working and whether contractions within the oesophagus are coordinated.

A 24 hour pH monitoring measures the amount of acid coming up (refluxing) into the oesophagus from the stomach over a 24 hour period. This allows us to establish whether your symptoms are due to acid reflux.”

hey.nhs.uk/patient-leaflet/...

pH tests confirmed that I do have acid reflux - which I knew. But when I saw the specialist (just last week), he told me that the manometry test showed hardly any muscle contractions in my oesophagus. Apparently just one of the 10 swallows I did in the test, showed any movement, and the splinter between my oesophagus and stomach was loose rather than tight.

Because of my sluggist oesophagus, any surgery to tighten the splinter valve (which could help the acid reflux), would be counter-productive as it would make it even harder for food to get from throat to stomach.

Sadly the doctor couldn’t suggest any treatment, only treating the acid reflux in the usual ways, and taking small frequent meals, sitting up straight to eat, walking round afterwards.

Although there was no easy answer, it was helpful to know what the problem was. Good to have a reason for always being the last person at the table to finish a meal…

It is unlikely that your problem is the same as mine, but I describe it just in case. It showed me that there are different reasons for these sorts of problems and it’s well worth seeing a gastric specialist to investigate.

I’ve no idea if ibrutinib had anything to do with my sluggish oesophagus, but it can certainly increase problems with stomach acid.

I hope you find some answers to your own situation. Let us know how you get on.

Best wishes,

Paula

[lizfuccillo in reply to PaulaS]

Paula, I’m sorry to hear that there is no apparent fix for the condition you described but at least now you know what is causing your discomfort. Sometimes just knowing that there is an explanation for what you’re feeling can reduce anxiety. Thank you for sharing your experience. - Liz

[flutterbye in reply to PaulaS]

Hi Paula, sorry to hear of your troubles. I am suffering with acid reflux just now but reluctant to take my omeprazole as they seem to make my tummy ache worse. I have just ordered an IQoro to see if this helps. Please look it up and you will find NIce and the NHS have done a lot of research on it. Best wishes Jacqueline

[PaulaS Volunteer in reply to flutterbye]

Hi Jacqueline, thanks for sharing about the IQoro. It was interesting to look it up, as I'd never heard of such a thing before.

First glance was that it looks a bit complicated but I'll be VERY interested to hear how you get on - I do hope it works for you. It would be wonderful if something like that could solve acid reflux without the various drugs that all have their drawbacks and don't always work.

Best wishes,

Paula

P.S. Are you still taking Ibrutinib on full dose of 420 mg?

[flutterbye in reply to PaulaS]

Thank you Paula! Yes, still on full dose. I’m into my 70th month of using it. It has worked very well for me regarding side effects etc. I will let you know how I get on with the IQoro

BW Jacqueline

[Zeit]

Yes, I have been on Ibrutinib for 3 years, the first 3/4 months I had no appetite and could barely swallow food. It is a rare side effect of Ibrutinib, it eventually went away although ocassionally I have a few days of it. The good (for me) part was that I never regained the 20+ lbs. I lost.

Best wishes,

Nan

[lizfuccillo in reply to Zeit]

I’m happy to hear that there is an upside to my swallowing issues-weight loss!

The strange part of all of this is that it comes and goes with no apparent trigger to set it off.

It’s weird that it is somewhat comforting to know that I’m not the only one experiencing this side effect (I don’t mean to imply I’m glad you’ve had this issue)

Thanks for your reply.

[Zeit in reply to lizfuccillo]

Believe me, you are not alone. There are so many side effects to Ibrutinib that if you read them all it would scare you to death. But it is worth the benefits. If you hang in most of them will either go away or get better. After 3 years the worst one I have right now is fingernails won't grow and crack and split. I can live with that .

Nan

[lizfuccillo in reply to Zeit]

Thanks for the encouragement!

[120940]

Hi my husband has been on ibrutinib since July 2019 and has trouble swallowing, has acid reflux, nightmares, confusion memory loss, dry skin, cramps on hand. He takes takes acyclovir, allopurinol, and pantropozole, and loratadine. He doesn’t want to take the last too. He could get Parkinson’s. His wbc is 115 and he takes 420 mg. Should he stay in this trial?