Questions submitted by readers and answered by the CLL Society Medical Advisory Board
Remember that we cannot give medical advice and any suggestions should be reviewed with your treating doctors.
By Thomas E Henry III, MBA, RPh, CPh
Four weeks ago, I started taking Venclexta 100 mg. Will the diarrhea go away? In the meantime, what can I take to stop it?
Here is the answer from Tom Henry, our pharmacist and a CLL patient:
Diarrhea occurred in 43% of patients with only 3% experiencing significant diarrhea. It is possible that this may decrease as your body becomes used to the venetoclax. I would recommend taking the over-the-counter (OTC) product, loperamide according to the package instructions to control your symptoms. This has been the most commonly used anti-diarrheal agent with treatment-related diarrhea for most cancer treatments.
I have been fortunate in that the only side effect I have experienced on venetoclax has been some swelling of the feet. Stay Strong!
Thomas E. Henry III, MBA
Registered Pharmacist in 23 states
Consultant Pharmacist (Florida)
Prior Chief Pharmacy Office at Moffitt Cancer Center (Tampa) and Roswell Park Cancer Center (Buffalo)
I have had CLL for 10 years with a mildly compromised immune system. Does it make any sense to take the two pneumonia vaccines at a five-year interval, instead of the standard 10‑year period?
Answer from Dr. Koffman: It’s a common and important question. Here is the link to a previous answer from Tom Henry, a CLL patient and expert pharmacist.
https://cllsociety.org/2019/12/ask-the-pharmacist-q4-2019/
In summary, Prevnar 13 once and Pneumovax 23 twice under some circumstances with timing depending on age, prior vaccines, and immune status.
Remember that we cannot give medical advice and any suggestions should be reviewed with your treating doctors. Thanks for your question for the pharmacist.
Has anyone with CLL and have a J pouch been treated with acalabrutinib or venetoclax? What part of the bowel are these drugs absorbed?
Here is the answer from Tom Henry, our pharmacist and a CLL patient:
I fully understand your concern about the medication absorption of CLL drugs given the fact that you have a jejunostomy. You specifically ask about acalabrutinib and venetoclax.
As you know the jejunum is the second section of the small intestine, located between the duodenum which is approximately 10 inches in length and the ileum which is the largest section at 3.5 meters. The jejunum is about 2.5 meters or 7.5 feet. How much jejunum exists prior to the ostomy may be a key factor in the absorption of drugs.
The emptying time for the stomach can be between 2 and 5 hours with transit through the entire small intestine running 2 to six hours.
Given this transit time, I believe that acalabrutinib will not be an issue because the average time to peak plasma concentration (T-max) is 0.9 hours with a range of 0.5 to 1.9 hours. There is an active metabolite of acalabrutinib (ACP-5862) that reached T-max on average was 1.6 hours with a range of 0.9 to 2.7 hours. This indicates to me that the majority of absorption occurs in the stomach. I am a bit concerned about the elimination of the drug because 84% is removed in the feces. I would think that your CLL doctor would want to do a series of blood drug level checks to get a picture of how your body absorbs and eliminates this drug. This may require the use of an outside lab because I doubt if this test is readily available in most hospitals.
The use of venetoclax may be a little less clear because the time to T-max ranges from 5-8 hours indicating that the majority of absorption occurs in the small intestine which we know you only have a portion that functions. The elimination of venetoclax exceeds 90% through the feces.
With both drugs, I believe to ensure safety there will need to be periodic drug levels drawn to determine how your body handles these drugs. The risk is that if blood levels are subtherapeutic you won’t get the positive results of these incredible drugs that control CLL well. On the other hand, if elimination is diminished you could have an accumulation of the drug in the blood and worsening of adverse effects.
Fatty foods are known to slow GI transit time and may be advisable if the decision is made to treat with venetoclax.
Unfortunately, there is very little data to give you a solid answer but my humble opinion is that acalabrutinib would not be an issue with the exception of elimination issues. Venetoclax however is a bit more difficult to give a solid answer. Stay Strong!
Why can’t you eat grapefruit and Seville oranges while on Acalabrutinib? What else can’t you eat or do on this drug?
Here is the answer from Tom Henry, our pharmacist and a CLL patient:
Thanks for the question. The reason that you cannot have grapefruit or its juice and Seville oranges (which are most commonly used to make marmalade) is that they inhibit, or block, the enzyme that metabolizes your drug. If that enzyme is not working, then the drug remains in the blood and the level of the drug continues to rise. We have found that the side effects are effected significantly by how high the level of the drug is in the blood. So as the drug accumulates, blood levels rise and side effects worsen.
With regards to other foods to avoid, you need to be cautious with herbs that are known to thin the blood. I’m on ibrutinib which is the cousin to acalabrutinib and I was told by my CLL Specialist that 420mg a day of ibrutinib is roughly equivalent to a full-strength (325mg) aspirin. Acalabrutinib has less anticoagulant property but it still has some.
When I recommend being cautious about these items, I mean that you should not use these items in capsule or tablet form as a supplement and that you should not include these items in your diet more than once a day and 2-3 times a week. Here are some popular herbs to consider limiting:
- turmeric (high content in mustard)
- garlic
- cayenne peppers
- cassia cinnamon
- ginger
You can do an internet search of “foods that thin blood” or “herbs that thin blood” for a more complete list. Hope this helps.
I began taking Ibrutinib about 4 months ago. I thought I was tolerating it well for the first 3‑plus months, but lately I’ve been having significant “tingling and numbness of my hands and feet, occasional trouble breathing, bodily nervousness especially when laying down and trying to sleep, anxiety, sleeplessness, and depression.” In your opinion, does Ibrutinib titrate? Do you think I should discontinue it (I will be checking with my oncologist)? Do you have any thoughts about Reischi and lion’s main mushrooms and EGCG, the active ingredient in green tea?
Here is the answer from Tom Henry, our pharmacist and a CLL patient:
I’m sorry that you are suddenly having issues with ibrutinib. I would suggest that you contact your CLL provider for guidance. He may want to see you particularly in light of the symptoms of numbness and difficulty breathing which could be signs of atrial fibrillation, a known side effect of ibrutinib. There have been some reports of insomnia or sleeplessness so if you take ibrutinib at night, you may want to switch to mornings. The other issues you list are not common side effects of ibrutinib.
I recommend you not stop your ibrutinib. Yes, the dose of ibrutinib can be reduced and still have good control of CLL. Research has shown that if patients do well at full dose for 3 months, that later reductions have little if any effect on your control.
I make it a habit not to comment on herbals and complementary medicines because that was not part of my training in pharmacy.
I have been on Ibrutinib for the last three months and although I was on levothyroxine, my thyroid has become underactive again. Is it possible that a tyrosine kinase inhibitor can lower the thyroid as tyrosine is needed to make thyroxine?
Here is the answer from Tom Henry, our pharmacist and a CLL patient:
I checked my favorite drug interaction site and they list no interaction between ibrutinib and levothyroxine. In my opinion this is just one of those periodic fluctuations when you’ll likely need a dose adjustment on your levothyroxine.
Thomas Henry is a Registered Pharmacist and CLL Patient. He is President and Senior Consultant for Burlington Consulting Associates, a company that provides consulting services to health systems nationwide. Tom is a CLL Society Medical Advisory Board member and strives to educate other CLL patients through his blog https//www.cllpharmacist.com. He has a forty-two-year career in pharmacy and has served as Chief Pharmacy Officer at two Top-15 Comprehensive Cancer Centers, Moffitt (Tampa, FL) and Roswell Park (Buffalo, NY).
Originally published in The CLL Society Tribune MRD Special Edition.