Has anyone been prescribed and started Acalabrutinib and venetoclax treatment in U.K. in 2020

[Tupence]

I have been told I am ready to start treatment but it has been deferred because of the Covid 19 status in the UK hospital where I go to see my haematologist .. has anyone else experienced this ?

[Eucalyptus22]

I started Acalabrutinib 9 weeks ago under the Astra Zenica early release programme due to covid. I would have had to have FCR otherwise. All my monthly consultants are by telephone but the cancer centre isn't closed, so if face to face was needed that would happen. I'm not having venetoclax though. The Acalabrutinib is awesome with excellent results to date and minimal side effects. Have you been offered these drugs under the same scheme?

[Tupence in reply to Eucalyptus22]

We discussed venetoclax treatment in February 2020 on a trial as I was on 4 weekly face to face review but covid stopped that and I was put on 3 month telephone review .. after that in June I was booked in face to face in September after some more diagnostics with a view to start newly licensed acalabrutinib with venetoclax .. but all postponed due to high covid numbers in Leeds. I now have an appointment on 5 Jan 2021 to review again but I don’t think covid situation is any better nor will it be for some time yet. I worry about the delay I am experiencing chronic fatigue. bone pain, night and day sweats and loss of sppetite due to discomfort and pain under both sides of abdo under ribs .. I worry that I’ll become too ill to tolerate the treatment when it happens .. and although I really would rather not be having to consider any treatment I feel lucky to have been offered the chance of such an exciting radically new treatment

[studebaker]

Is there a possibility for treatment with Acalabrutinib only for now and add Venetoclax later after COVID is under control if needed ?

Dana

[Tupence in reply to studebaker]

Thank you for your reply .. I didn’t know suggested treatment was up for discussion ( rabbit and headlights comes to mind) and I didn’t know to ask .. this will be my first treatment ( I was dx in 2016) and was spoken about starting from beginning of 2020 but Covid delay ensued ... this definitive treatment was set to start in December ...only to be further delayed ... I shall ask at my next haematology appointment on Jan 5

Many thanks

Kate

[studebaker in reply to Tupence]

Good luck to you Kate. Happy New Year 🍾🥂🇨🇦

Dana

[Eucalyptus22]

I was stage c, severe and nearly 100,% infiltration in my bone marrow when diagnosed. When Acalabrutinib was offered I jumped at the chance as i didn't want to do chemo. There has never been any discussion about the need for Venetoclax. I would ask at your 5th Jan appointment if Venetoclax is needed. I'm certainly not expecting to need it.

[Tupence in reply to Eucalyptus22]

Hi Thanks for your advice .. I will ask next week .. I had bone marrow assessed in 2016 at 30% .. but now I have bone pain in hips and shoulders, over the last month all symptoms have increased with lymph glands ands and abdominal pain the worst.

Why is acalabrutinib preferable in Covid crisis to Venitoclax ?

I hope your treatment is going well .. I am also relieved to be offered a non chemo route .. I just wish it could start.

Kate

[winterwild in reply to Tupence]

My Dr told me that Acalabrutinib works well on reducing the tumors and the Venetoclax works well on the Blood. I am now on Acalabrutinib and doing well.

[Pageboy in reply to Tupence]

Hi, you can take Acalabrutinib at home without too much monitoring by the doctor other than bloods every couple of weeks to begin with. Venetoclax often requires a hospital stay to monitor you as they need to check your reaction to it. So, if you can’t spend time in hospital, then Acalabrutinib on its own is better for now. I started three weeks ago on it (apart from bruising no side effects so far) and Obinutuzumab is scheduled to be added in the spring when hopefully Covid has calmed down. Good luck, I am sure you will do well on it. And don’t wait much longer. If you feel the time has come to start treatment, you must tell them. CLL can be difficult for doctors to get the balance right so it’s important you tell them how you feel.

[Eucalyptus22]

Hi Kate, Really not sure I know the answer to that, but I'm sure someone on here will. Maybe I was offered Acalabrutinib on its own because you don't need to be anywhere near a hospital during the treatment. From the little I know about Venetoclax, it is introduced slowly on a 5 week ramp up basis to avoid tumour lysis syndrome and sometimes overnight hospital stays are needed during the titration period which wouldn't be ideal at the moment.

If you get offered just Acalabrutinib on its own, my experience would be to grab it with both hands. I am like a new person on it!

Best wishes

K

[Tupence in reply to Eucalyptus22]

Thanks for those optimistic words .. I shall go next week armed with more information.

Many thanks

Kate