My CLL journey: Started my journey with... - CLL Support

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My CLL journey

Missmuffinandme profile image
11 Replies

Started my journey with Calquence. So far I have made it a habit to connect with a pharmacist at

Biologics that dispensed the drug. He has been helpful answering all questions I have had as to

supplements I can take. It is to soon to notice any negative reactions.I have only had muscle aches and a slight headache. Not so bad so far.. Good luck to all starting on this journey.

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Missmuffinandme
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Kvb-texas profile image
Kvb-texas

Howdy… just wanted to offer encouragement. I am going on 9 months of treatment using Calquence with really good results and no side effects. It started to work almost immediately for me. As far as supplements to not take… my pharmacist said that Calquence binds with Calcium and can reduce Calquence effectiveness by over 50%. I didn’t realize it, but had been taking a multi-vitamin that had 600mg of Calcium carbonate. And then, looked at the label of protein drinks and they also contained a high amount of Calcium or Calcium carbonate. I wish you great success in your treatment. Kvb-Texas

HailMary-USA profile image
HailMary-USA in reply toKvb-texas

Hello, asking if someone could please clarify whether only calcium supplements are contradicted with Calquence, or also dairy food products.

I’ve not found any warnings against the latter.

Thanks much.

Best wishes from Mary.

Kvb-texas profile image
Kvb-texas in reply toHailMary-USA

I would like to hear other feedback as well. I had asked the same question to my pharmacist about drinking milk (I love milk). They told me it was probably a good ideal to not drink it within 2 hours of taking the medicine. But they didn’t have any statistics on the percentage reduction like they had with Calcium carbonate. I had been told to not take stomach medications with calquence, but I didn’t realize that the primary ingredient in the stomach medications was often calcium carbonate. Kvb-Texas

AussieNeil profile image
AussieNeilPartnerAdministrator in reply toKvb-texas

The original formulation of Calquence/acalabrutinib requires an acid stomach for absorption, which is why PPI drugs such as omeprazole (Losec, etc), need to be replaced by the less acid reducing H2 Receptor Blocker class of drugs like famotidine. (Not everyone finds these effective enough, in which case zanubrutinib may be a better option - if available to you, than acalabrutinib.) It's also important to time your stomach acid reducing drug with your medication with 2 hours of separation. Ideally, take your acalabrutinib first, then your stomach acid reducing medication 2 hours later.

So anything such as an antacid which is taken to reduce stomach acid discomfort, such as calcium carbonate tablets, milk of magnesia, bicarbonates, Tums and the like, are what you need to watch for.

It's the carbonate/bicarbonate, etc that's the concern, not the calcium. So other carbonate tablets e.g. magnesium carbonate or other strongly alkali (high pH) substances could be a problem too, depending on the dose. Check with your pharmacist or take them with 2 hours separation.

Milk, cheese and other dairy products tend to be neutral to acid (e.g. yoghurt), so I can't see any reason for concern. I'm not a chemist, pharmacist or medically trained, so do verify with your pharmacist if you have any concerns.

Neil

lankisterguy profile image
lankisterguyVolunteer in reply toKvb-texas

Hi Kvb-texas, & HailMary-USA & lindalou5 & AussieNeil

-

I recently learned that a new tablet version of Calquence was approved that avoids the issues with acid blockers, stomach acid neutralizers, etc. See medscape.com/viewarticle/97...

-

SNIP The benefit of the tablet formulation is that patients with acid reflux and other problems can take it with proton pump inhibitors, antacids, and H2-receptor antagonists, the company noted.

-

Len

Tablet version of Calquence avoids acid for absorption
AussieNeil profile image
AussieNeilPartnerAdministrator in reply tolankisterguy

That's fantastic news Len! I found I had plenty of company in appreciating being able to go back on a PPI after finding a H2-receptor antagonist, also know as a H2 blocker (famotidine) inadequate for the task while on acalabrutinib/Calquence treatment.

With all the BTK inhibitors competing for market share, it's disappointing that we aren't seeing a drop in price, but at least we are seeing improvements in tolerability, along with lower adverse event profiles.

Neil

Kvb-texas profile image
Kvb-texas in reply tolankisterguy

Wow. Thanks for sharing. I will ask my doctor about that. Kvb-texas

Missmuffinandme profile image
Missmuffinandme in reply toKvb-texas

Thanks for the heads up on calcium. The amount of my plant based calcium ws O.K. by the pharmacist bu twill be asking again to be sure.I just started my journey 10 days ago.

Missmuffinandme profile image
Missmuffinandme in reply toKvb-texas

Thanks for your response.Really appreciate it.All's well so far. Only a week into my journey

lindalou5 profile image
lindalou5

Wow this is interesting to me. I have recently found out that iron is not absorb well with calcium either. double whammy with Calquence. So what does a person do for supplement and bone health.

HailMary-USA profile image
HailMary-USA in reply tolindalou5

Linda, what I do is take Vitamin D3 supplements with dairy products, to encourage better absorption of the calcium.

My doctor has recommended Fosamax, because that seems to be the standard protocol for first line treatment of Osteopenia.

I’ve declined it but would never suggest that others go against their doctor’s advice.

Fortunately I don’t need iron supplements and seem to get some benefit from foods such as spinach, beets, liver and red meats.

Wishing you the best.

Mary

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