Treatment advice after calquence fails? Pain relief advice?

[SimmiP]

Hi I'm new in here. My mum has CLL. She was 80 on new years day. She was previously diagnosed with sarcoidosis about 7 years ago and then CLL in March 2018. She had iv chemotherapy as a day case and was well until a flare up in July 2021. She was admitted to hospital given steroids and acalabrutinib upon her return home. The acalabrutinib (calquence) was like a miracle!! After thinking we were losing her she was well again. Then suddenly on 3rd Jan this year she noticed the lump in her neck swelling again and she is now bed ridden in so much pain and awaiting an urgent ct scan and biopsy of the neck lump. She has been taken off the acalabrutinib as they've said her body has found a way round it. I'm so scared that we will lose her. Does anyone know if there are other treatments available after acalabrutinib has failed? Any advice will be great. Even pain relief advice. She was on codeine and now on tramadol but it's not touching the pain. They've said she may need to be admitted for pain management but as no visitors are allowed in hospital we want to avoid this again!! Hoping some one can help!🙏 thanks for reading xx

[lankisterguy Volunteer]

Hi SimmiP,

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I hope we can help with suggestions for your Mum's doctor to consider. And thank you for filling out your profile completely healthunlocked.com/user/SimmiP that makes it easier to target our replies to the UK NHS if needed.

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We can answer one of your questions Does anyone know if there are other treatments available after acalabrutinib has failed? Yes there are several drugs approved in the last 10 years that could be considered by her doctor. Venetoclax / Venclexta is often used either with or without Obinutuzumab / Gazyva in cases where Acalabrutinib/Calquence develops resistance.

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However we cannot give medical advice and her doctor should consider all her medical conditions and her history of sarcoidosis before choosing a treatment plan.

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You sound like a caring and supportive daughter, and I hope you can motivate her medical team to find a solution to her pain and suffering.

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Len

[SimmiP in reply to lankisterguy]

Thank you so much for reply. Hopefully her oncologist can look at these options you have suggested 🤞 She is a very special and strong lady! I am an only child so even though I'm 54 I'm not ready to lose her!! She's my best friend.

[LeoPa in reply to SimmiP]

Watch her spleen. Yesterday there was a post about a ruptured spleen as a consequence of stopping ibrutinib and acalabrutinib. Depends from her blood lymph levels before stopping.

[SimmiP in reply to LeoPa]

Thank you we will do. She did get more pain in her lower back but that seems to have relieved a little. But we will keep an eye on her. Thank you x

[Ptown]

Hello SimmiP, when I read your post I was immediately struck by all the love for your cherished mother infused in each sentence. Please know that our community here stands at the ready to help you and your mom with our best thoughts, shared experiences and support as you navigate this next chapter in your lives. Please let us know how things are going for you both. We are here to help.

Take care, Carolyn

[SimmiP in reply to Ptown]

Many thanks for your kind words. She is definitely a very special person. She is having an ECG tomorrow and finally got an appointment next Tues for the biopsies so hopefully we will soon be able to start more treatment! Unfortunately the neck swelling is huge and is affecting her throat again so eating and talking are restricted. Praying for speedy medical intervention!🙏💕