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CLL Support Association
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imbruvica

hi , i go by the name bushia. 75 yrs old and have been fighting cll for over 8 yrs. several bouts with chemo last session 1 yr. ago. Yesterday started imbruvica. Day 2 severe diarrhea. wondering how long this will last. what else can i expect. when is the best time to take the 3 pills every day?

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How awful, you need to call your doctor.

~chris

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Hi Bushia! And welcome.

CLL specialist Dr. Richard Furman had this suggestion regarding the side effects of Ibrutinib (especially diarrhea) and when to take your dose:

"The side effects that are consistently seen with ibrutinib include GI (mostly diarrhea, but also cramping, bloating, reflux, and gas) and bruising. The GI side effects are markedly reduced if one takes the ibrutinib at bedtime. I believe this is due to not having food in the GI tract while EGFR is inhibited by the ibrutinib. The ibrutinib only needs to be taken with sips of water (so you are not all night urinating)."

Apparently, it's the EGFR (epidermal growth factor receptor) that Ibrutinib inhibits in the intestine that's considered responsible for the gastrointestinal (GI) issues.

Good luck!

kim

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Thank you Kim for the information. I appreciate it.

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Hi bushing

Will be starting next week. I wish you healing and short bouts with the diarrhea. Please keep us appraised.

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Thank you Sally

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I've been on Imbruvica for 18 months and can happily say I've had near zero side effects. A few very minor bouts with G I issues generally quickly fixed by one dose of an anti diarrhea medicine. Hopefully you'll get past this initial bout and go on to a much improved condition with Imbruvica

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Thanks for the information RJR1

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I was told to take ibrutinib within 30 minutes of eating to make it easier on the stomach. I wonder what other people were told. I'd much rather take it at night before bed. While Dr. Furman is a top specialist, so is mine (Dr. Byrd). I've been on it for over a year, and I only get diarrhea if I eat really high fat diet and don't drink water. Hydration also helps with cramping. I have found the side effects manageable.

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Hi thompsonellen,

I'm really glad you mentioned high fat diet relating to diarrhea whilst on Ibrutinib . I had come to that conclusion too, but didn't know if this was a known link. I first noticed the link when I had fish and chips from the chippy ( about as high fat as you can get!). I'm currently trying to lose weight, so on a low fat diet, and have not had any problems since I started the diet.

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Yum, fish and chips, but I can do fish or chips only and need to at cleanly the rest of the day. I'm on the weight loss train myself right now. Good luck.

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No more fish and chips for me now - I've learnt my lesson sadly. A moment on the lips, a lifetime on the hips.

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Hi! My husband (CLL) and I have both started a low carb diet with LOTS of colorful veggies, moderate protein and relatively high fat. The weight is just dropping away from BOTH of us (NOT unplanned/unexpected weight loss). It is great because we are both overweight/mildly obese and NEED to get healthier to help heal the CLL. There is some good research coming out on the ketogenic diet as a promising adjuvant (additive) treatment for cancers. The diet itself is safe and has been used therapeutically for epilepsy suffers for years. It seems that the diet causes our bodies to switch to burning fat as a fuel instead of sugar (glucose). This switch in diet means our bodies now create fatty acids and ketones for use by our cells (which they can use without issue!). We are kind of like hybrid cars in this way we can burn either glucose (sugar) or fat and can switch between the two. The interesting thing is that cancer cells ONLY use glucose (sugar). That means a ketogenic diet could be a way of "starving" cancer cells and at least preventing them from multiplying so quickly.... I have been speaking with a registered dietician who works with CancerCare Manitoba (Canada) and is up on such things. We are making an appointment to see her soon through the CLL clinic there. Perhaps this might be an area of interest to you as well...?

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CLL cells use fat... not sugar...

Hope you will be seeing Dr. Johnston for your husband's CLL, he is a leading Canadian CLL specialist... running the CLL Research Cluster..

lymphoma.ca/post/manitoba-l...

~chris

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Thanks, Chris. We are indeed going to the CLL clinic in Winnipeg. I will also be going to the CLL Live conference in Niagra Falls next month. Will you be there by chance?

So are CLL cells B cell different than other types of cancerous B cells in that they metabolize fatty acids and ketones (fats) and not glucose (sugar)? My understanding so far is different.... Please send links or names of research articles if you have them. I appreciate reading the literature first hand. Thanks!

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My diarrhea started in the second month of taking Ibrutinib and lasted for 20 days. After 20 days I woke up and it was gone! Good luck.

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Thank you Becky and good luck to you also.

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Bushing hi. The diarrhea will stop. Be patient. I have been on imbruvica for 4 months and my fingernails have become very brittle I was told I could take biotin vitamin 5000 mcg but haven't as of yet. Hate taking so many pills . Muscle cramps in legs and hands ,but not to bad. Many people do not have any symptoms at all. My numbers are starting to get in range, so I want to stick with the meds. Wishing you the best of luck . Merry Christmas to you and your family🌲🙏🏻

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Thank you Corkyrissa, and Merry Christmas to you and your family also.

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One hint for the brittle nails, keep a small bowl of olive oil out. Soak your fingers for 3-5 minute once or twice a day. You will see amazing difference. I had the same issue and a friend who is a manicurist suggested this!

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Hello Bushia, my PCP suggested using Metamucil and more fiber in all meals to alleviate diarrhea and it worked. Started Ibrutinib 3/2015 three per day with breakfast. Then two as developed AFib in 1/2017 and started Eloquist. With two blood thinners the bruises and tiny red spots use 1/2 dose Eloquist with reduced IB.

For muscle cramps at night tried Gator-aid but found “Emergen-C sink,manganese, C, electrolytes and antioxidants. Less calories and packets come in several flavors by Alacer Corp.

I will be 77 in March and work 1/2 days but need to rest in the afternoons.

I feel good to great daily and “I’m fine till I’m not”.

Hope this helps, Jeri

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My doctor has me taking it at night before bed so it does not interfere with meals.

Be well.

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I see recommendations all over the place about whether to take Ibrutinib on an empty stomach or with food. Here is a paragraph from a piece I wrote for the the CLL Society in September.

When taking ibrutinib it is important to take it at approximately the same time each day with a full glass of water and you should maintain good hydration throughout the day. It is important to swallow the capsules whole and not open, break of chew the capsules. Some providers caution that this medication should be taken on an empty stomach either one-hour before eating or two hours after eating however, an analysis of 3 pharmacokinetic studies suggest that ibrutinib can be taken without regard to food. (Cancer Chemotherapeutic Pharmacology 2015;75(5):907-916. I suggest you not make a change from your prescribers instructions without first talking to them about this study as they may have more up to date information or a different rationale.

I am a CLL patient and Chief Pharmacy Officer at Moffitt Cancer Center in Tampa, FL

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TomHenry

Will be going to Moffitt Center in a few months for second opinion! Need recommendation for hotel to stay reasonable near Center. I live in southeast FL. You work there and are a patient at same place!?

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There is a Residence Inn about 8 minutes from hospital and a Embassy Suites closer. I know both of these have shuttles that will take you right to door. I know there is a hospital rate at Residence Inn, not sure on Embassy. There are a bunch of other hotels near I75 on both Fletcher or Fowler Aves. Stay closer to I75 that I 275 which is rougher neighborhood.

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Yes, I started at Duke but took temp job at Moffitt but now it will be permanent. I see Dr. Pinilla he is very well respected in CLL world.

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My GP put me on Metamucil. Works for me.

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