Acalabrutinib

[Vinweesel2023]

I sent in my prescription 5 days ago and today I have been told by the pharmacist when I tried to pick it up that the drug is no longer available. I have tried two other drug stores and they are saying the same. The London Regional Cancer Clinic is closed on weekends, the cancer clinic pharmacy is closed on weekends and I cannot contact my oncologist on weekends and I have 1 days worth of medication left. I feel sick. Why would my oncologist give me 4 repeats on the drug if it is no longer available. Has anyone else been told this.

[MorganNL]

Hello Vinweesel……I’m Janet and I also am taking alacabrutinib. I’m not sure where you live, but I live in Canada and I have not had any issues getting my Calquence (acalabrutinib). Astra Zeneca is the company that provides my acalabrutinib and some patients have said the drug is being switched from a capsule form to a tablet form…..in fact some of the patients on our Canadian Calquence app are saying they have already been switched to the tablet form. I am not sure if this changeover is a factor in you having problems getting your medication but the medication here is still available in both forms.

I would contact your clinic, pharmacy and oncologist on Monday to find out what is happening to your supply.

That being said, I would not panic if you do not have medications for a few days. I have been taking this drug for 2 years now and had to stop taking it twice on two separate occasions for minor surgical procedures. The first time I stopped was for 5 days, and the second time I had to hold it was for 2 weeks. On both those times I had no issues whatsoever from the brief halt in acalabrutinib….it did not affect my bloodwork at all.

Hopefully you will get some answers and some medication in just a few days🙏🏻

[Vinweesel2023 in reply to MorganNL]

I live in London Ontario. I went on the Astra Zeneca web page and they are switching the meds from capsule to tablet. CALQUENCE has changed its formulation from capsules to tablets. This important formulation is designed to allow CALQUENCE to be taken by people who also need to take stomach acid-reducing medications. The safety and effectiveness of a CALQUENCE tablet is expected to be the same as the CALQUENCE capsule. The strength and dosage will remain the same: One 100-mg tablet by mouth twice daily, approximately every 12 hours — with or without food. You would think that my oncologist would have known this before sending the refill to the pharmacy. I guess I will just have to wait and speak to her on Monday.

[MorganNL in reply to Vinweesel2023]

Yes, I’m sure it will get straightened out. I’m due to renew my refill in about 10 days, hopefully I won’t have a problem as well🙏🏻🙂

[Vinweesel2023 in reply to MorganNL]

Thank you. I straightened out the issue yesterday and apparently the new script was for tablets which they could have ordered but did not notice the change. The last refill was for capsules.

[Skyshark in reply to Vinweesel2023]

So the doctor got it right and the pharmacist can't read.

[danimal7777 in reply to Skyshark]

That's a relief! I've been on the tablet form for over a year. I believe the drug is still made in Red China, which has been a source of concern about source-of-supply.

[Vinweesel2023 in reply to danimal7777]

Anything coming from China is a concern. Canada was handing out covid testing kits and after Health Canada did some research the test kits were only effective if you were full blown covid. Totally useless as a preventative and guess where they were made....China

[Vinweesel2023 in reply to Skyshark]

I had one repeat on the old script which was for the capsule form and the new script was for the tablets. No one mentioned the change and the cancer clinic hadn't faxed over the new script as of Friday. Total cluster. The cancer clinic pharmacy faxed the new script to the drug store and I picked it up this afternoon.

[Vinweesel2023]

The pharmacist scared the living daylights out of me when he told me it had been discontinued.

[craterlake]

hi Vineesel2023 ... i have a new bottle of Calquence in an unopened fed-ex box sitting in my office .. if you need it ... i am taking venetoclax now ..so i don't need it .... i live in southern oregon ..they will probably get it straightened out for you tomorrow .. not to worry ...🙂 .... james

[Vinweesel2023 in reply to craterlake]

Thank you for the generous offer. I live in London Ontario and have to deal with the London Regional Cancer Clinic. I did get the issue straightened out yesterday with the drug store and it came down to old repeat was for capsules which they could not order to the new script being for tablets. It was the capsules that were discontinued not the drug but no one was available to explain that to me. I am picking up the tablets sometime this afternoon.

[craterlake in reply to Vinweesel2023]

perfect !!! 😊

[Nucleusman]

get mine directly from hospital via Haematologist in Hammersmith

[stevesmith1964]

Hi, There is no shortage of Acalabeutinib, the presentation has changed to tablet not capsule I believe. Surprised on your supply, I have monthly bloods before Acalabeutinib is issued and I also keep a month's supply extra, plus covid vitals and GCSF at home just in case needed.

[Eucalyptus22 in reply to stevesmith1964]

Can I ask what covid vitals are?

[stevesmith1964 in reply to stevesmith1964]

Virals... dam predictive text..

[Eucalyptus22 in reply to stevesmith1964]

Does your GP allow you to keep antivirals just in case? If he/she does that's something I think all consultants should do for us Cll'ers. We know so many people are not testing positive until days 5 or even 6 and passed the 0-5 day treatment point.

[stevesmith1964 in reply to Eucalyptus22]

My GP has no involvement with my CLL treatment. I have had covid 4 out 5 times , only once did I need treatment, thats was a mono clonal antibody treatment for the dealta variety pre Paxovid. What I do is when test positive now I order paxlovid via 111 etc. The side effects are quite bad, so that do is keep them, treat my covid symptoms with paracetamol and will use paxlovid stock if I feel I really need them. I immediately stop Acalabeutinib if I test positive to ensure the reduce the risk of a PE.

[Vinweesel2023 in reply to stevesmith1964]

I can only get one month at a time. The issue filling the script was the change from capsule to tablet on the last refill to tablets. Oncologist forgot to mention that on the last visit and sent the new script to the Cancer Clinic rather than the drug store I deal with. There are no staff available at the pharmacy, Cancer Clinic or any of the three London hospitals that can give you any info if it is on the weekends. So yes I panicked when the drug store said the drug was discontinued. I straightened the issue out myself and I am picking up the tablets today. It is the cost of the drug that stops them from giving me more than one month at a time.

[stevesmith1964 in reply to Vinweesel2023]

I built up a stock as I have a monthly script... but over last 2 years or so I have had to stop periodically for Covid infections, dental work and a chest infection, thus have plenty of buffet stock

[Vinweesel2023 in reply to stevesmith1964]

There are 4 refills at the pharmacy but they will only issue one month at a time. They say it is too expensive to keep on hand. I do not pay for the drug. You mentioned you have had covid 4 times. Did you get the shot if I might ask?

[stevesmith1964 in reply to Vinweesel2023]

Had 7 or 8 shots.... took 3 and 2 covid infections to get antibodies. Now I just treat covid a something I get on a regular basis.... I am 60 and a full time dad t9 myn6 and 4 Yr olds, so difficult to avoid.

[Vinweesel2023 in reply to stevesmith1964]

I skated through covid without getting it and both of my sons worked full time at the covid testing center. I turn 72 this year and decided not to get the shot. I did get covid in August of last year and knock on wood I can avoid it. It is what it is. I take so many supplements I rattle when I walk. Hoping the antibodies I have will help. 9, 6 and 4 you sure have your hands full.

[Artlover1908]

Hi, Astra Zeneca announced last year that they were swapping to tablets as they were more stomach friendly, good for people like me who have had stomach problems in the past. I was on capsules, but have been on the tablets a couple of months and they work just the same, but now I don't have to worry about the 2 hour period before I can take my Famotidine. Sorry your having supply problems, must be such a worry.

I'm lucky as here my hospital prescribe the medication and it's delivered to my home. Bless the NHS.

Hope you get the medication soon.

[Vinweesel2023 in reply to Artlover1908]

I called the London Regional Cancer Clinic today and spoke with the pharmacy and they no longer carry the capsules they have switched to the tablets. I had the prescription transferred to Shoppers Drug as I could park for free rather than paying $8.00 each time I went to pick up the scripts. The issue was the last repeat was for capsules and the new refills were for tablets but the pharmacist did not notice the change. I am picking up the tablets today.

[Vinweesel2023 in reply to Artlover1908]

I finally sorted out the issue on my own and I am picking up the tablets today.

[Artlover1908 in reply to Vinweesel2023]

That's great news. Hope all goes well.

[Vizilo]

I live in the Niagara area and my specialty pharmacy just refilled my monthly prescription for Calquence. So, the capsules are still available. I get them couriered (for free) from BioScript Pharmacy in Kingston, Ontario.

[SERVrider]

I get my supply of Acalabrutinib from the hospital pharmacy (Royal Surrey County) every three months. I haven't heard of it being provided through an ordinary pharmacy (Boots, Lloyds etc). The most recent prescription which I started 3 weeks ago, is in the new tablet form rather than the old capsule format. I have a three monthly consultation with my haematologist/oncologist and a few days later collect the three months' supply of Calquence and Co-trimoxazole.

[SERVrider]

Vinweezel, I have just re-read your post, I had assumed you meant London UK, not London Ontario. As Mr Simpson would say, "Dohhh.." We may share a King but Canada and the UK are two very different places!

[Porridgeater]

Hello everyone I am new to this site. I am wondering whether anyone else has experienced burning itching or severe rashes since changing from Acalabrutnib capsules to tablets?

I have been taking Acalabrutinib for CLL since August last year together with acyclovir and an antibiotic and everything has been going really well, so much more energy, greatly improved appetite and good blood results such that I moved on to having a blood test ,consultation and medication package every two months. However this time round I discovered my Acal capsules had been replaced by tablets (nobody mentioned any change was about to happen!) Several days later my legs started itching madly together with fore-arms and back of head but no rash.Then a seriously itchy rash appeared all over my back. I reported in to my local hospital oncology unit and was advised to stop taking Acalab for a week until the rash subsided( the rash was checked by my haematologist), also to take antihistamine tablets. I was also told I couldn’t revert to the capsules as they were no longer available. Suddenly?!

I have just restarted my regime and await events but I would love to hear from any other furious scratchers out there.

Porridgeater

Cumbria. NW England

ps. I’ve yet to find out if this is a world wide production issue or an NHS procurement one.

[Skyshark in reply to Porridgeater]

They have changed to tablets everywhere. Tablets allow use of some other medications with Acalabrutinib.

About the rash, you should re-post this as a separate new question. Click on "home" at upper left and then on "What's your question?".

[Vinweesel2023 in reply to Skyshark]

Found out the hard way of the change but was able to get the new prescription filled Monday. Not too sure about "rash." That wasn't my question.