Calquence changed from capsules to tablets.

[linnylee]

Recent change of Calquence from capsules to tablets caused an interruption in my husband who has CLL receiving his medication on time as the pharmacy did not do their job in getting it out, as the doctor had changed the script and the insurance company had approved a week before my husband ran out and was out of medication for three days. No one seems to know if this will have a negative effect and if not why take it twice a day and recommended not to miss a dose??? Anyone else have a problem with getting their Calquence after the change from capsules to tablets?

[cllady01 Former Volunteer]

I know it is unnerving to not have the medications at the ready. After the tension and concern we have as we are preparing to go on treatment, it is usually a routine we have set in order for taking the meds as prescribed, with/without food, with water, etc.

Any disruption can be worrying. However, we are all human and can ourselves miss a dose at least once . There is a provision for those instances and your Dr. or RN may or may not have related the information to you---who remembers all that is said when you are nervous about the seriousness of the situation.

Here is guidance for any future lapse in your schedule---hopefully the pharmacy will be prompt in the future---you might want to call them a week before the next pill bottle is empty. The Speciality Pharmacy I used would have me count the number of pills I had left when they called to say they would get the next batch to me and it always was the day before I needed them.

The following is a link to the Acalabrutinib insert information with a "snip" regarding missing a dose: drugs.com/pro/calquence.htm...

Missing A Dose

Dosing InstructionsInstruct patients to take Calquence orally twice daily, about 12 hours apart. Calquence may be taken with or without food. Advise patients that Calquence capsules should be swallowed whole with a glass of water, without being opened, broken, or chewed [see Dosage and Administration (2.1)].Missed DoseAdvise patients that if they miss a dose of Calquence, they may still take it up to 3 hours after the time they would normally take it. If more than 3 hours have elapsed, they should be instructed to skip that dose and take their next dose of Calquence at the usual time. Warn patients they should not take extra capsules to make up for the dose that they missed [see Dosage and Administration (2.1)].

[linnylee in reply to cllady01]

Thank you! A missed dose (1) can happen, but days and days missed due to the pharmacy not sending is not addressed in any information and the pharmacy, doesn’t seem to care) my husband always asks them why they want to know how many pills left when they know the dose and the schedule and they send it out monthly… But we always have to call when it’s getting close to running out… and now with the change to tablets they really seem inept in getting it to the patient… it’s stressful enough having CLL but to have to be at the mercy and have to keep on top of the pharmacy doing their job is exhausting and frustrating… also to be home to take the medication off the porch before porch pirates or weather (rain/heat) affect getting the medication at all or destroyed. Don’t get me wrong, I’m so grateful my husband’s CLL is being treated just wish it were available at a local pharmacy. 😢

[cllady01 Former Volunteer in reply to linnylee]

The calling before hand might be the place to start---call earlier than you have been calling--- have the number of pills that are left in your bottle counted --- have the date you will need another ready and state that you do not want to be without them as you were last time.

I know there are problems with the leaving the meds on the doorstep---I am retired so was able to plan being home---And, I live in the same city the specialty pharmacy is located and the pharmacy is owned an operated by the oncology group that my CLL Dr. is a part of.

So, I had nothing of the frustration you have been enduring.

Also, call your Dr. and relate your experience of delayed and missed pills.

Your CLL Dr. should be interested in the lack of expediency with the deliveries. If he has an RN you can talk with, I'd start with there to get the Dr's staff involved in checking out the system.

Best wishes for a smoother time of it to come once your voice is heard!

[linnylee in reply to cllady01]

Thank you! Great advice! 💖

[Big_Dee]

Hello linnylee

I know how disturbing late deliveries can be, fortunately I can drive to my specialty pharmacy as it is 2,5-hour drive. Blessings.

[linnylee in reply to Big_Dee]

yes, it is… frustrating. Thankful for the medication, just wish it were available locally.

[Zeus52]

I shouldn’t worry too much, during other recent illnesses (chemo) and most recently Covid my acalabrutinib has been paused for up to a couple of months. Although not ideal situations my bloods remained in normal range throughout. Acalabrutinib has worked extremely well for me, when I commenced treatment in May 2021 it worked within weeks reducing huge lymph nodes and returning blood to normal range - long may it last!

[linnylee in reply to Zeus52]

Thank you!! So happy it’s worked well for you and to hear that it seems missing even a couple of months had no ill effects! 👍

[DoriZett]

I was on Calquence for 5 years and had to stop for a few days here and there for various reasons - dental procedures, colonoscopies, endoscopies, skin surgeries, other surgeries, etc... many times. My lymph nodes would plump up (in the early days of treatment - less so later in treatment) but there were no other ill effects. It's not ideal to stop treatment (and as I say - "tease" the CLL) but as others mentioned - very few of us NEVER miss a dose for one reason or another and it is usually fine. Hope all will be well in your situation.

[Luv2Craft]

I received a call from the pharmacy saying they ran out of capsules and needed a new prescription from my doctor for the tablets. My doctor said they spoke to the pharmacy and gave authorization to send me the tablets. Now the pharmacy is saying they need clinical notes and my doctor said they sent them. Then the pharmacy said the clinical notes were more than 3 months old and they needed more recent ones to get insurance approval.

I have called my doctor's office and the pharmacy so many times that I have almost given up. I ran out of capsules on November 1st which was 6 days ago. I don't understand why this whole process has to be so difficult. It has been going on for two weeks now.

Vicki

🙁

[AussieNeil Partner Administrator in reply to Luv2Craft]

This is totally unacceptable. Find out how you can escalate this so it is resolved quickly and so others aren't similarly adversely impacted. AstraZeneca would, I expect, be interested to hear of your experiences. Given the FDA approval of the capsule and tablet equivalency, this just should not happen!

Neil

[linnylee in reply to Luv2Craft]

So sorry you’re having such a frustrating experience too… I hope you receive your Calquence soon! My husband missed 3 days… and we spent a lot of energy and time calling, emailing and calling again and again to really find out the doctor and insurance company were on top of it, it was the pharmacy that was holding it up. Good luck! Let us all know how it goes! 😢💕

[Luv2Craft in reply to linnylee]

Linnylee, it's been 13 days since my specialty pharmacy ran out of the Calquence capsules. Some of my lymph nodes have begun to swell and myabdominal pain has returned. I can handle the pain from the swollen lymph nodes in my arm pits, but the abdominal pain makes it hard to eat and all I want to do is lay down in the bed most of the day.

There is good news at the end of the tunnel. My doctor, the pharmacy and my insurance company have worked out a solution. They say it was a computer glitch. The pharmacy called me today (Sunday) to schedule a delivery date for the medicine on Tuesday November 15,2022. So, I will have my medicine in exactly 2 days from now.

I hope the 15 days without Calquence won't have an adverse effect on my health. My WBC was in the normal range the last time I did Labs. I'll let you know how I turn out.

Also, I was informed that there are many people experiencing the same issue, which would explain why the pharmacy is open on a Sunday.

Vicki

[MorganNL]

I have had to stop my Calquence twice since starting on it last February. Both times the 10 day stoppage was needed for procedures that I needed. I found no negative consequences at all👍👍

[linnylee in reply to MorganNL]

good to know… but then perhaps we don’t need it twice a day everyday??? 👍