Hi, I have been on Imbruvica since April 2018 and no treatment prior. My numbers are doing well. I have had many months of not feeling myself this past year. I can't pinpoint a reason why. I will have a very full feeling in my stomach and slight nausea much of the day. Some days worse than others where I have even canceled plans. I have had 5 severe bouts of food poisoning since August. I have no allergies and have never had any sensitivities to any food at all. I do take Omeprazole with my Imbruvica 140mg each day. My Oncologist advised me to take a probiotic and see if that could help. I did that and changed my diet 2 weeks ago and felt great! Then I ate a small amount of fried food ( which has never bothered me prior) and I have been sick again for 2 days. I mean enough to miss work. Could this be the Imbruvica after 4 1/2 years? I don't know what to make of it. I have always felt great on this medication. I feel like these bouts started last Spring. Sometimes constipation will accompany these days but not always.. It's happening enough days of the week now where I am getting worried and miserable. Any ideas? Thank you!
Stomach Issues: Hi, I have been on Imbruvica... - CLL Support
Stomach Issues
Hello!!It could be your gallbladder. That used to happen to me before I had it removed and I am not on treatment. Fried and fatty foods used to make me sick sometimes for days. Then I had to go with a brand diet to help get it back under control. You may want to mention this to your doc.
Yes I will!! Strong family history of gallbladder issues also. I don't have any pain at all just that full feeling and nausea. Thank you so much for this information! Did you have pain with yours?
I don't have any pain but I just tried to eat two saltine crackers and within two minutes the nausea increased immensely
Not at first but it showed up later. I also had bloating and nausea. And I just felt sick. You should see your doc about it and ask about ulcers as well. Once mine was removed all the pain, bloating and nausea went with it!
Good for me to learn too. I've had right side pain in the gallbladder area since lymphoma started. But after a bunch of consults, finally a surgeon pointed out that since it's not happening with food, it's not my GB. It's only pain. There's tiny stones but no GB sack inflammation on ultrasound. So it's useful to see the symptoms are fullness, bloating, nausea, and later pain, and fried foods have a direct impact. I suspect and the doctor concurred that it's fascia getting tugged from the enlarged spleen (from the lymphoma) and not the GB itself.
That makes sense. Thanks for your info also. I said in another post, this got much worse with some fried food I had 2 nights ago. I have eaten very little since but even a couple of saltines today made my nausea increase a bunch so it seems like ulcer or gallbladder at this point. I should find out tomorrow. Hoping nothing drastic happens tonight!😳
Hope it was a sleepy-non-eventful night!
My one bad night was a few hours only, to a bowl of frozen raspberries, diet creme topping, and almond milk. Not fried or fat heavy. It's part of what gave the surgeon pause. A bit of crackers helped calm it all down. It wasn't gallbladder...
They did labs for gallbladder stuff (liver etc) and gave me meds for stomach settling. Will do ultrasound next if it doesn't resolve. Still very full feeling and nauseous today.. no pain. So perplexing. I did mention all suggestions here to the doctor and they will keep exploring until we figure it out! Thanks!
I had my gallbladder removed years ago. A fat free diet isnt as simple as you might think. It isnt just fried foods but any food that is made with fat. Chocolate, cakes, crisps, biscuits, pastry etc. I ended up eating chicken and vegetables. I had porridge made with water or dry toast with jam no butter. As soon as I ate fat I would be sicking up bile from my liver. I felt really ill. Diet creme and almond milk contain fat. If it turns out to be fat related you will know as soon as you eat it. Anne uk
I've had pain in a particular physical spot approximately where the GB is, but it doesn't go with stomach & digestion issues. Just a sore spot near the rib cage that shows up in the back sometimes too.
Your description again confirms that I don't have a similar problem. The nut milk (it was a mix of nuts) was 30 cals a cup, so couldn't be much fat. The diet creme has zero fat, was Walden Farms (I was trying not to get bogged into details.) It's doctors, not me, that were adamant that the low cal, low fat meal was a clue. Particularly since I've had no problems of that nature with any other meal, ever. It seemed strange for any of the foods to be spoiled, but food poisoning came up as possible.
I'd had an ultrasound that day, and the tech had leaned on the spot until it hurt. Doctors shrugged about whether it could be connected since it was many hours between, but in my mind, it was very possible.
It's so clearly physical and not digestive that, fascia from the spleen shoving everything around, seems sensible. (My lymphoma is smzl, splenic marginal zone.) The other is I have newly diagnosed parkinson's. GB's on the right, so I'm still trying to find out if that's a factor.
It's been really helpful for me to hear everyone's descriptions of GB problems. Makes it more assuring that the surgeon was judging well. (He was a referral from another surgeon who wanted me to go to someone more expert.)
Thank you! This is how my sister eats due to lifelong stomach problems. I have always had an iron gut! I think a few things made a perfect storm for some gastritis. Miserable! I will still need to change my diet because I sure don't want this again! My labs came back normal (liver and pancreas).
I have gastritis now. I blamed it on taking Naproxen for years. I took Omeprazole and still need it. Since I have been taking Ibrutinib I have very little enjoyment of food. I can only eat small portions and I feel full quickly. My cll is in remission but I will ask about lymph glands and spleen. I had treatment in 2010 and before this my spleen was enlarged. It pressed against my stomach like a gastric band. I lost weight because I couldnt eat very much.I blame it on the Ibrutinib but I will tell the consultant. I had a camera look at my stomach and it showed inflammation but thats all. You have my sympathy. Its miserable and I hope you get it sorted. Have a nice Christmas, Anne uk
Just fyi feeling full and nausea can also be symptoms of ulcers. I'm just mentioning that as another thing to look into with your general doctor related to foods reactions. I was on imbruvica until it caused beginning ulcers in esophagus and stomach that I was unaware of (no pain) until it caused fevers and I ended up in the hospital with sepsis infection from it. Keep looking for the cause of those symptoms, I wish you good luck.
Gallbladder was my first guess, too. You need to see your General Practitioner/Primay Care Dr. Sometimes a gall stone can be blocking a duct or it may be an Gallbladder infection.
Don't wait to make an appt. and if the pain gets worse, go the emergency to be seen immediately.
Thank you! I will do that. I don't have any pain at all just the full feeling and nausea but my family has a strong history of gallbladder issues so I will make sure to mention that to my doctor also.
I replied to curlscurls with tips on diet if you have a gallbladder problem. I was sent to a nearby hospital for an xray. She said she could see lots of gallstones, some large. They do block the bile ducks.I have stomach issues since beginning ibrutinib. My portion sizes are small because I feel full up quickly. I have had tests that showed my stomach is inflamed. They called it mild gastritis but if it was worse it might be an ulcer.
My vitamin b12 levels were really low and I had injections. It was surprising what this causes. Its worth having it tested? Metformin and omeprazole cause it. Anne uk
Yeah, you need a doc visit - I've had the gallbladder issue with the blocked bile duct, I've developed the adult onset food allergies (both mild/moderate and severe), but I've missed the ulcers, and this could honestly be any of the 3 or something else b/c the symptoms of each overlap.
If you never had food allergies/intolerances/sensitivities pre-CLL, well, I can tell you that after an illness, you can develop them now b/c I've done that twice...one with a mild/moderate allergy and one with a severe allergy (which did pop up after the more severe illness). So, don't rule that out.
The way to try to help you doc is to start an immediate food diary with what you ate/drank and when and what happened. This should help narrow down issues if it's not gall bladder or ulcers.
Thank you for this information! I have been recording my diet the past 2 weeks in my Fit bit app so I will keep doing this! I just ate a couple of saltines and within a minute the nausea got worse. Ugh.. My daughter wondered if I had developed an allergy/intolerance also. I will mention everyone's replies to my primary doctor. They have same day appts so I plan to go tomorrow.
All the best at getting it sorted out and healed!
Thank you!!
I had gallbladder problems 20 years ago. The first “attack” happened after a restaurant meal. I felt like I had the flu. The next “attack” manifested in not being able to sit still. This came at an inopportune time and it was very uncharacteristic of me. The third “attack” involved pain which lead to the diagnosis.
You might also get tested for a gluten allergy. My son suffers from this. When he eats gluten, his stomach is distended and he gets a rash. Obviously we try to avoid his eating gluten. He may also have other symptoms we are unaware of.
It’s not a bad practice to eliminate other possible causes of one’s ailments first. Then you are on firmer ground to change your approach into your CLL.
Thank you! The more replies I get the more I think this is point to gallbladder (or ulcer) but with my strong family history of gall bladder and stomach issues I will make them check! 
It's very helpful to hear everyone's experiences and symptoms!
Any indication as to size of your spleen? Secondly, gall bladder with the fried food description.
I would definitely get my gallbladder checked out! Also, I had some “acute ulcerative colitis “ a while back caused by meds. Went off for a while and it cleared up. If you are experiencing lots of issues, a colonoscopy may help pinpoint some issues.
Yes probably an endoscopy too if things don't clear. It seems to be better today and the Carafate they gave me is helping a lot. All lab was normal. Thinking now it was a flare up of gastritis. I was on an antibiotic a couple weeks ago that I had to stop taking due to esophogeal and stomach pain/upset. I am wondering if that was the trigger now.
Have you seen a gastroenterologist, a complete check up of your digestive tract maybe helpful. Please ask to see one.
I have not yet. Started with my primary. All labs from yesterday came back normal. I am a bit better today. I am guessing gastritis but I will certainly go to a gastroenterologist if things don't continue to improve quickly! Thanks!
FWIW, I had severe skin and GI problems on ibrutinib, such that I stopped the medication. I just couldn't continue to live that way, and unlike many people, the effects didn't go away once I had "adjusted" to being on the med. The dose kept getiing decreased, until it no longer worked aginst my CLL, yet I still had GI side effects. I simply couldn't take *that* med. Drugs since then, even one with a similar mechanism of action, did not affect me like that. So my 2 cents worth, is to stop the med briefly & see if your symptoms resolve. If so, you probably need something other than ibrutinib to treat your CLL. If the symptoms don't resolve, then it probably isn't the drug. I can't say if pausing treatment briefly at this point in time is a good decision for you, CLL wise, but it's something to ask your doc about.
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