CLL Support Association
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Ibrutinib and diarrhoea

Started Ibrutinib 3 months ago on the Ibrutinib/Venetoclax Trial. No side effects until start of week 8...diarrhoea. Didn't bother me at first as only once a day at my "usual time". After 3 weeks of it, it was 3-4 times a day and reflux started followed closely by nausea and then vomiting about every second day. I took loperamide for diarrhoea - one tablet 1/2 hour before each meal and one before bed, increasing dose to 2 tablets (ie taking the max of 8 tabs in a 24 hour period). This did nothing. Metoclopramide did nothing for the vomiting so I switched to cyclizine this week and I am now on ondansetron as that is meant to have a side effect of constipation. Had some mild nausea but no vomiting for a few days. Someone suggested Questran for diarrhoea (and I have noticed it mentioned on cllsociety) which I have asked trial Doc about - they will get back to me at my next appt Wed - which is when I hope to ask them about anything else I might learn here. My wcc and lymphs have dropped to almost "normal" already and last Wed I started the venetoclax, so it's all worth it - I'm 17p del so really need to be on this trial. Have lost 7kg in a month so pretty keen to get this sorted not to mention things are pretty delicate down there after 6 weeks of diarhoea. Thanks in advance for any suggestions.

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Thanks-best of luck!

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Sorry to hear.best wishes.

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Am on Ibrutinib CLL trials and have never got any stomach or digestion problems. It's been two and a half years so far.

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Hiya,

I can completely empathise with the diarrhoea as I had it, just like this and with stomach pains. It's so debilitating and can confine you to the house until the 3-4 times is done. I also had the nausea, reflux (terrible) and a mouth full of ulcers although, sadly, somehow I didn't lose weight!

2 years later the diarrhoea is pretty much the same so I can't offer any comfort there but the reflux and nausea stopped, only to be replaced by arthralgia which was slightly preferable over the other two.

I think the best thing I can say, that might help, is that for me, diet plays an enormous role in how I am. Salads and small amounts of 'simple food' is best and can drastically reduce the problem but processed food, curry and generally eating out has a dramatic effect on me.

It might be worth keeping a diary of what and when you eat, varying it so that you can see if some things improve it as mine did. I can't suggest any medication as I decided not to take anything because mine was self limiting to just the mornings.

The only other thing I'd want to say is to hang in there, things will almost certainly improve and take one day at a time. Try not to think about these side effects going on and on or you'll feel like giving up and get very down. You've got a 'goldilocks treatment' (rare, just right and highly desirable) that is probably one of the best combinations in the world at the moment for giving you a chance of getting a durable, MRD negative remission. That is the goal, keep reminding yourself of it.

Sending you best wishes, take care and let us know how things are.

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I can empathize with you as I am also on the Ibrutinib Venetoclax trial and have issues with diarrhoea. I find that what I eat makes a difference. Have almost given up fruit and vegetables apart from carrots, sweet potatoes and a few cooked raspberries as this seems to be the only way I can control it. Fish seems easier to digest than meat and I'm ok with yoghurt. Suggest keeping a record of what you're eating and seeing what works best for you. Have used Questran and found a low dose of that works. For the other delicate problem I find Sudocrem works wonders. Stick with it if you can . Good luck.

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Thanks for that. Did the bland diet for a month made no diff. Have switched back to an almost normal diet this week - no difference. I say almost normal as I usually eat a diet consisting of fruit veg whole grains fish and avoid processed and sugary foods, organic soy instead of dairy except yogurt - hard to gain weight and dont want all that fibre right now, so I've had to add high calorie foods which seems to bring in processed and dairy. Miss eating my usual healthy diet. Do we get enough nutrients when it all goes through us like this? Hopefully this won't last too much longer, though I'm learning it does for some people. All worth it when you see and feel the results especially so quickly.

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It's really helpful to read all these replies. At least you don't feel so alone with the problem! Once you're on the full dose of Venetoclax you may be able to reduce the Ibrutinib dosage. I had a fall and had to stop Ibrutinib for a week because of bruising. I was concerned about how it would affect the overall outcome but was told you can get complete remission on Venetoclax on it's own. Felt great that week, no diarrhoea! Surprised they've said to take the Ibrutinib with food as I think I've read that it stops you absorbing the correct dosage, though maybe they're trying that rather than reducing the dosage.

I also wonder if we're absorbing enough nutrients. I alternate Cherryactive, Blueberry active and pure blackcurrant juice very well diluted in a drink so hopefully am getting the nutrients without the fibre. I also have had a cystitis problem so am drinking 2 to 3 litres of water each day. Just wondering if getting more fluid into you might help? Also wonder if you could try some probiotics like Optibac?

Am now putting Vaseline in my handbag. Brilliant idea (Sudocrem pot a bit too big ! )

Hope things get better for you.

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So true. Usually I can find answers to my questions just searching here, but its so nice to be able to reach out when you can't find them. My understanding is its better absorbed with food in tummy. I've not heard of those 'active' drinks. I drink a measured 2.2litre water a day plus herbal teas and a juice. I couldn't always manage it while nauseous but definitely am now. Thanks for your support and suggestions. I'd read a lot about these side effects passing within a month so its comforting to hear I'm not alone in this unpleasant side effect and that there are some other things to try to make life a bit more comfy. Cheers

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Hi CatNapCrew--I use Vaseline (petroleum jelly) for the delicate tissue that comes along with diarrhea. I keep a jar in my bathroom and also a small one in my purse. It's very soothing and also helps keep things clean. I also wear a panty liner when I'm having a bout of diarrhea and keep extras in my purse along with a clean pair of underwear just in case (use a ziplock bag).

Imodium (loperamide) works for me for diarrhea so I don't have any suggestions on that. However, for nausea, I really respond well to Phenergan (promethazine)--it is sedating but works wonders on my nausea and the generic is inexpensive.

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Hi ALL

I too just started IB for 8 days now; noticed different diet did play a part. Yes, eating out was disastrous for me too as the food I took was oily & spicy. Also started a "diary" solely for IB side effects using "Notebook" apps.... wonder if anyone has better suggestions?

Replies from JM954, SKMarshall & Mrsminton are very beneficial for me.... Thanks lots!!!

Seok

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Imbruvica sure hits all of us differently. In my case 15 months in rarely any episodes and the few are quickly cleared with 1/2 tab of Imodium.

One of my oncologists has said that certain of his patients " can't tolerate " the 420 mg dose... he has several that cycle on and off and others on 140 or 280 mg

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Envious. I felt at 7 weeks maybe my body was saturated with ibrutinib and yes maybe 420mg too much for me. Worked fast. Not sure if they reduce dose on trial??? I will give it another month now on the venetoclax too and then discuss with doc. If I could get it down to once a day again its tolerable, 6-7 times a day is too much.

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I am sorry you are having this issue. Please be sure that you are not having other issues. I know of some people who are on trials and we're having diarrhea and it turned out that the drugs caused " drug induced colitis".

Ask you doctor for a colonoscopy to be sure this is not going on. Many doctors only order a Ct scan to rule it out , but at times colitis can not be seen on a Ct scan, a colonoscopy is needed. If it is colitis it needs to be treated as it can give you major issues including it can be fatal, especially if you are loosing weight.

Good luck.

Dina

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Thanks for that. They've taken stool sample and said I'm clear but I will bring this up next appt.

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Wish I could see a difference with diet as I hate taking all these pills. I've gone from nothing - not even vitamins, just eating a healthy diet, to 15 a day and now 10 after dropping the loperamide. Anyone looking at ibrutinib don't let this put you off. Everyone's different and from what I've read most people seem to get over it. The results make it worthwhile. I feel I may be like one of the patients rjr1 mentions who can't tolerate full dose???

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I am on a similar trial and the doctor allows me to take my meds about 9 PM two hours after dinner. That seems to really help with not having the meds interfere with the food . I am almost 9 months in and doing OK so far. Numbers are good and side effects are not too bad .

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I like this idea. Will be asking at my appt Wed. They have told me to take with food but I'm relaying your story and see what they say. Be nice NOT to have to take a drug with side effect of constipation to stop diarrhoea!?! Cheers.

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K, Or at least until side effects get better

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Ta for your tip. They said I can switch until straight after dinner but they want the interaction with some food as its meant to get more ibrutinib into me. I want that too at least until I'm mrd- but at least after dinner its less food so worth a try.

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Sorry to hear about your debilitating reaction.

I live by the motto that "we are what we eat," so I'd like to echo the diet comments of others.

There are foods that help tighten things up, such as rice, bananas, and grated fresh apples. Grated apples are actually better than applesauce, because the pectin is released with grating. I concur with others who have suggested not having spicy or rich foods, so cutting down on fats and sugar can also be helpful. Taking a probiotic may also help.

For acid reflux, I will restate my frequent suggestion of one or two forkfuls of kimchee or sauerkraut, which provides immediate relief.

Diarrhea can cause dehydration, so the huge amount of water already suggested when taking both Venclexta and Imbruvica may have to be increased. You might check with your physicians about whether even more water would be indicated for you during this time.

As one who has avoided the runs both on Idelalisib and Imbruvica, I have felt very fortunate. Although we are each different, and each reacts differently, I often wonder if my good fortune is due to being a vegetarian for about 35 years, and a vegan for the last 6, along with not eating sugar and grains. So even though I eat a fiber-rich plant food diet, I was spared this nasty symptom. May you find a healthy balance and move through this phase quickly. :-)

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for those in the same boat heres an update. after two months my bowel movements are back to "normal". Not sure if it sorted itself out or if the questran helped as it sorted out slowly over 3 weeks on questran (which makes me think it just went away of it's own accord as most seem to have an immediate response with the questran). All the while avoiding foods that can aggrevate the situation and in the last month eating more soluble foods to aid the situation, drinking plenty fluids, exercising - basically doing all the right things (which I was from the start so we don't know why it suddenly started after 2 months on ibrutinib). Whatever: Im glad it's behind me (no pun intended) and for those suffering the same issues HANG IN THERE. All worth it when I get my results. Finished the venetoclax ramp up, on full dose now. CLL in my blood is down from 91% to 13.5% already, all but platelet count is normal. Feeling great. Good luck to all of us fortunate enough to be on this trial.

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That’s good news catnapcrew. I’m glad your problem eventually sorted itself. I’ve been taking ibrutinib for the last 3 days and I’m sitting here clutching my Imodium and my tummy is doing somersaults. I was ok for the first 2 days but I’ve just eaten spicy prawn tagliatelle and I don’t think it was a good idea! 😳

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Hopefully just a one off. Good luck and hang in there. Only two weeks after starting ibrutinib his lymph nodes in his neck visibly reduced - incentive to keep going. 9 months into the trial (ibrutinib and venetoclax) he is almost MRD negative - just one stubborn lymph node, but his marrow and bloods are clear!

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That’s amazing! X

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Started Ibrutinib 9 months ago and Ventetoclax 6months ago on the Ibrutinib/Venetoclax Trial. I guess I am lucky as diarrhea only kicked in 4 months ago while on holiday in Thailand. I have had monthly checkups with my Hematology Dr and the check up, after the holiday, Dr said could be change of diet as I eat Thai food their not Western. Ok came home for a month little diarrhea and had another holiday 2 months ago in Malaysia for a month had diarrhea on and off . I came home I month ago had a cold but no diarrhea and the check up just after arriving.. Dr said wait and see probably a cold..but now the cold has gone but I have this tightness in the chest, sniffles, weakness and lots of diarrhea. :(

I have tried bland diet banana, toast and rice with no luck .. suggestions ?

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