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Indigestion?

Has anyone else suffered from a feeling of a lump in the oesophagus and hiccups when eating? I also get woken up with a pain in the chest at night. My GP says it's indigestion but I've not I had this before and I've been on Imatinib 400mgs since Sept 2009 (with a year on DESTINY at 200mgs). My GP has given me pink aniseed flavoured liquid ( Peptac) but it doesn't seem to work and I'm on bottle number 4 now. Is this a new (to me) side effect. It's been on and off since December of last year. Would really appreciate some input.

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Can't say I have ... but one quick question: have you found yourself able to burp OK?

David.

Hello Chrissie

I haven't had the hiccups, but I do get a chest pain - like indigestion or heartburn - in the night.  I tried Rennies, which worked for a bit, but needed something stronger, so I am now on a low dose of zantac (ranitidine), which seems to do the trick.  It's not a new thing for me, but has got worse over the years I've been on imatinib.

Olivia

David - I've never been able to burp in my life. Wish I could. It caused my poor mother a lot of problems when I was a baby. I certainly feel that a good burp wuld ease the build up of what I assume is wind in the gullet.

 

Thanks for the replies

Best

Chrissie

Thanks, Olivia. A number of people on the Facebook page are having the same problem and zantac seems to be prescribed along with omerazople ( sp??). Strangely enough after eating a beef curry for dinner last night ( kill or cure!!) I felt fine. Maybe it's passing like side effects seem to. Heigh ho,

Best

Chrissie

I've had omeprazole too, and I don't like it much.  Apparently it works in a different way to zantac, and I have read that the side effects can be worse.  I've got enough side effects already, thank you!

Occasionally I have tried to go without the zantac (or forgotten it), and been woken up later with the pain, even if I felt fine when I went to bed, so now I do try and remember to take it. Funny, I never have a problem remembering imatinib....

Olivia

Thanks again, Olivia. It's good to read that there is something simple out there to ease night pains. Had another good night last night so will have to see which way it goes, but I will ask my GP about zantac - easier to take a tablet than to cart around a large bottle of "jollop".

Isn't it strange how side effects come and go and although all was fine before I joined DESTINY and half dose,I've had the full range since going back on full dose Imatinib last Oct although the first 3 months were fine. Hopefully I've now had the lot so can look ahead to plain sailing ( hmmm?). 

Are you still on 300mgs? And how are the pains now after decreasing the dose ?

Best wishes to one and all

Chrissie

Hello Chrissie

Thanks for asking about how I'm doing.   I've been on 200 mgs for the last couple of months, but I'm not entirely convinced that my doc believes it will be OK - he asked me to get another test after 2 months, so that he will have the result when I next see him at the end of June.  Fingers crossed.  So far, I haven't noticed much difference between 300 & 200, though perhaps a slight decrease in the number of nights I've been woken with cramps.  So if I have to go back to 300, it won't be too bad (I hope).  Everything else is much the same.

Good luck with the zantac, I hope it works for you, and it is certainly easier than having a bottle of pink stuff to spoon out - less sticky, at least!

Olivia

Hi Chrissie,

If I get any kind of digestive problem/heartburn etc. I drink one 8 oz glass of water with 1/4 to 1/2 teaspoon of sodium bicarbonate - plain sodium bicarb only - not baking powder that has additives- you can get it from larger Boots outlets and it is very cheap...... and it works within 5 mins. 

Sandy

Thanks, Sandy. Sounds nice and straightforward.

So.Olivia, it's 200mgs, not 300mgs - fingers crossed here. Aren't they so much easier to swallow?  Lots of luck with staying on the low dose.

Best to all

Chrissie

Yes, indeed, the little pills are much easier to swallow.  Recently a Parkinson's nurse suggested to my husband that his pills (about the same size as 400mg imatinib) may be easier to swallow with fizzy water.  Worth trying, even without Parkinson's?

Olivia

Hi Chrissie

Sorry I've been a bit slow on the uptake on this one.

I had almost exactly the same symptoms with my "indigestion" - including a difficulty swallowing.  This really bothered me and made me sick on a few occasions. I was a bit concerned frankly but one of the first consultants I saw when I was diagnosed with CML said this was caused by acid reflux and the oesophagus was reacting by tightening, causing my swallowing problems.  I have always had indigestion/reflux but imatinib made it much much worse.  I tried all kinds of things short of medication without any success.  Basic antacids also just didn't work.  He suggested I take omeprazole, low dose (10mg per day).  This worked fantastically well and completely got rid of all symptoms.

Now that I am off imatinib (on DESTINY) I have more or less stopped the omeprazole. I still get symptoms now and again and may take one if they are really bad (they take a bit of time to work) but generally I try not to any longer.  But when I was using it, omeprazole did the trick and as I say, I've had no side effects and all my blood profiles, kidney and liver functions are all fine now. It was very low dose in any case.

Good luck

Richard

 

Thanks, Richard,.

Yes, I was worried as I know 3 neighbours who have had oesophageal cancer and I thought i had the same symptoms. And yes, I have also been sick a few times - but that is because I can't belch ( never in my life) andit's the only way to get rid of the wind. Again, yes, I have always had some form of indigestion (a projectile vomiter as a baby) but never as badly as this. I am back to see my GP  in a couple of weeks - the Peptac liquid kind of helps but I still wake with pain at 4.00am each morning and can't get back to sleep despite taken another dose of "jollop". I'm a bit concerned about links omerprazole has with dementia and think I'll ask to start on zantac - and will also start trying Sandy's remedy of bicarb. At least I now know it's nothing more sinister.

Best

Chrissie

Chrissie,

Have you been tested for H-Pylori infection? This can cause a lot of digestive problems similar to yours. Many of us test positive for this bacteria that lives quite happily in the acid environment of the stomach/gut causing terrible discomfort. It can be treated with a triple antibiotic therapy which works for some.... others find a 2 month course of Matula Tea (my mother got rid of H-pylori with this tea after triple therapy didn't work for her longstanding digestive problems).

Sandy

Hi Chrissie

I think best discuss the right course for you with your doctor.  All I can say is that when I reported what I thought were really quite worrying symptoms, I was reassured that it was excessive acid production which was impacting my oesophagus.  Medicine solved my issues really well.  My consultant suggested that for me, omeprazole would be better than Zantac.  And I'm happy to report that it worked almost immediately and indeed I have not had a single swallowing problem since (which strongly suggests my consultant was right about the cause).  I've also been reassured several times (including recently) that it is ok - I only took 10mg which is very low dosage.  But definitely discuss it all with your doctor.  

As for omeprazole and dementia, I looked at the comments on the study reported in the Mail and Telegraph - seems there are some specific criticisms of it and NHS guidance hasn't changed. There are loads of factors apparently relating to dementia. I recall reading recently that there has been a very substantial drop in incidence among men, as a result of better health generally - diet, exercise, reduction in smoking and alcohol apparently.  I would like to think those are in my favour (CML made me get fitter, lighter and eat better than I have been/done for years).  The same drop has not been observed in women - because they are, so I believe, generally healthier already... 

Good luck - am sure you will find a way to solve the problem.

Best

Richard

Thank you so much, Sandy and Richard. I did wonder about an ulcer - my father had lots of these and my husband had one a while back. I shall discuss this possibility and omeprazole with my GP when I see him next week and also with my haem. in clinic on Monday.

The past couple of days have been good - no trouble. Long may it last but that's the strange thing about TKI side effects - coming and going. I never had any side effects on 400mgs IM before I went on DESTINY at 200mgs Imatinib, then lost MMR and had to go back onto 400mgs last Oct. This time round I think I've had most of them - nausea after taking the tablet, excruciating knee pain, mouth ulcers, teeth that seem to have shifted in my mouth causing my "bite" to stop marrying up, indigestion, breathlessness...However, I seem to be back in MMR ( awaiting May's result) so in the grand scheme of things, all is good.

Today, all is fine - long may it last.

Best to all as ever,

Chrissie

Chrissie,

H-pylori bacteria has proven to be a prime cause of ulcers. I suggest you ask for a test to see if you are positive.

Sandy

Yes, will do next week. Thanks, Sandy.  Went back onto 400mgs Imatinib Oct 2015. To put the inconvenient side effects into proportion:

PCRs   Jan - 0.04,

             Feb 0.035

              May 0.025

Just shows that we can regain MMR after failing DESTINY.

Best

Chrissie