Hi Everyone - I have been struggling on and off with Ibrutinib side effects the main ones being uncontrolled blood pressure spikes, anxiety attacks and palpatations which come out of nowhere and seemingly for no reason. All have been thoroughly investigated including having an angiogram. I am managing as best I can with with meds but it continues to occur anyway.
My doc mentioned that Acalabrutinib should be available soon for what I have - CLL 17p delete - and that I would be a good candidate but I read that you cannot take products like Nexium, a proton pump inhibitor with it because of contraindications.
Nothing works for my reflux but these types of PPI medications and I have tried all kinds. Has anyone been on Acalabrutib with a PPI during a trial and what was your experience or does anyone have any other information about anything said here?
Thanks - Roy
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Roydeane
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My sister takes something called mastica chios for her acid reflux and swears by it. You can get it from a health food store. I believe that you are supposed to take one pill three times per day on an empty stomach, but she only takes one and it seems to do the trick. She was taking prilosec, but wanted to try something natural.
Thanks Fell for the suggestion. I will look into this. I have been told that I could also have a surgery which has a 90% chance to repair my reflux problem which is also a great option - the less meds the better.
I am on an Acalabrutinib clinical trial. I had to go off Prilosec and it’s been a struggle. I am on Zantac, TUMS, and a liquid called Carafate. Reflux is still not managed. I’ve drastically changed my diet to exclude alcohol, chocolate, spicy food, fried food, etc. if I get a dish that’s too highly spiced, or a pot pie crust that’s buttery, or too many onions, I still suffer.
On a clinical trial and you have to be careful about what natural cures you might take for anything, and all of that is reviewed and limited.
The change in diet and the TUMS work best, but are still far from fully effective. But the challenge is with twice a day dosing of the Acalabrutinib, you can’t take any other medications or supplements two hours pre-or post dosing. Which means I have to wait a while to even take TUM’s.
On a brighter note, the side effects from the Acalabrutinib have been minimal. A few moments of nausea morning and night, dry fingers and lightly splitting nails, light bruising, and mild headaches. I’ve been on the drug for 10 months. I am unmutated, 11 Q deleted, and Trisomy 12. My lymph nodes have reduced 83% in these 10 months. So it’s a win so far! Best of luck to you.
Wow. Ok... that was great information. Not what i wanted to really hear but at least i can consider my options and investigate. Thanks for all the information. - Roy
Cllcanada's advice is on the money. H pylori is often the culprit in chronic acid reflux and usually responds well to a couple weeks of antibiotics (a few different ones are used).
Equally important, in my humble opinion (I'm a Registered Nurse), is the care and maintenance of our gut microbiome. There is tons of research, both completed and ongoing, around this topic. I'm dropping a link below my post to an article by Christiane Northrup, MD. While her practice focuses primarily on women's health, everyone can benefit from the information in the article.
Wishing you all a wondrous holiday season and good health always <3
I was on PPI meds for some years. Endoscopy identified narrowing of esophagus due to inflammatory processes and reflux - dilation was carried out every ~2 years.. In between I regularly choked on food.. It was a big quality of life issue, inconvenient, limiting, embarrassing..
Last year I saw a dietician. I cannot remember why. It then seemed possible or probable that my issue was food allergy.. They should have told me sooner:
After a 2+ month exclusion diet (Google 6 food group, or 4 food group, exclusion diets) I began E reintroducing foods, little by little.
To my great surprise, those 2 month exclusion had given my body time to heal.. Upon trying egg containing foods, I had a most unpleasant reaction.. Dairy, especially if the fractionated/powdered variety added to some processed foods including varied 'dairy' confection, also gave me troubles.
:: I'm allergic to eggs! Who'd have thought?
Over the next 2 months or so, I reduced PPI use, switching to occasional half antacid pill in bed if my stomach was 'angry'..
I've been off PPI meds for several months, no longer suffering reflux, but seeing gastroentology consult tomorrow for follow up.
I hope this unlikely tale might help someone with unexplained reflux. Instead of major exclusion diet, you could simply exclude commonest food intolerances one at a time for a couple of months - see what happens.
-- PS. "Let's grab a sandwich sometime!" Noooooooo! Grrrrr...
Don't talk to me about shop bought sandwiches! In UK they almost all contain mayonnaise (contains eggs), which is a nuisance for a quick bite, but dysphagia is behind me - I can readily swallow supplements and tablets with confidence again. Big relief with CLL/SLL treatment in my future.
Sounds like quite the project but worth the results. I will look into this along with all the other good advice i am getting. Thanks goodness for this forum!! - Roy
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