I’ve recently been diagnosed with No Hodkin Lymphoma and my consultant would like to prescribe Zanubrutinib, however it isn’t available on the NHS.
I have some private health insurance through my job but they are reluctant to authorise it.
Has anyone been able to get this authorised (as a first line treatment) either through the NHS or privately.
Hope you can help.
Thanks,
Richard
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Hi @Woody1 welcome to posting on our forum.
I hope someone will be able to share their experiences for you.
You say that you have recently been diagnosed how are you feeling and doing?
Do you have any support?
I look forward to hearing more about you.
Look after yourself
Thanks Erica.
I’m doing ok, thank you.
I’ve got a few good people around me for support, so I’ll be ok.
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Hi @Woody1 I have been on Zanubrutinib since last December. My consultant prescribed it once it was cleared at the end of last year. Admittedly, I am in Scotland and it was prescribed for Chronic lymphocytic leukaemia (CLL) and not Non-hodgekin lymphoma but it seems odd that I was able to get it on the NHS and you’re not.
Get back to me if you have any questions and btw, it seems to be working pretty well for me.
Regards
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Hi @Arson and @Woody1 great to hear from you again @Arson .
I believe Scotland and England are 2 different health boards, but I am not a medical person.
Perhaps the Blood Cancer UK nurses can help @BloodCancerUK_Nurses
Look after yourself and please do keep posting how you are doing
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Dear @Woody1
Thank you for posting. Just wanted to check in and see how you are feeling following your recent diagnosis of Non-Hodgkin lymphoma (NHL)?
It is understandable that you ask about the availability of Zanubrutinib. As you can see the NICE approval of Zanubrutinib is only for certain Blood Cancers following at least one other first line treatment: BNF is only available in the UK | NICE.
May I ask whether you and your Consultant have considered Clinical Trials as an option for first line treatment? Our Clinical Trials Nurses would be happy to talk to you about this Clinical Trials Support Service | Blood Cancer UK and they have a referral form here: Blood Cancer UK Clinical Trials Support Service referral | Blood Cancer UK
If you would like any support or to talk things through please do get in touch: Blood cancer information and support by phone and email | Blood Cancer UK
Kind regards
Gemma
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Thank you for coming back to me. It looks like I am going to get the Zanubrutinib as I’ve got some other complications that might not respond well to traditional treatments, so that’s hopefully a small victory!
Really pleased it’s working well for you. I hope it continues to do so.
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Hi, late to the party but I was on the Zanubrutinib trial from 2018 until 2022 after 4 years on Watch and Wait. Low grade Lymphoma (Small lymphocytic lymphoma (SLL)/Chronic lymphocytic leukaemia (CLL)).
It kept me well so good luck with your use of what I believe was a significant help.
I’m currently in part remission but don’t mention the other minor medical issues!
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Hi @Imalex27 you can join the party any time you want to, you are very welcome to be part of our forum family.
You have already shown one of the values of our forum by sharing your experiences for others.
I look forward to hearing more about you, really look after yourself and please do keep posting
Thank you @Imalex27 . Really appreciate your comments.
I’m now 9 weeks into the treatment and it’s all going well so far.
Fingers crossed 
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It’s good to hear it’s going well for you. Long may it continue.
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