I took my last doses of Ibrutinib and Venetoclax on 31st October 2024, exactly 6years since my very first dose of Ibrutinib which was on 31st October 2018. It's been a long journey however I am so grateful to have been given the opportunity to participate in the FLAIR Trial. I finally reached MRD negative after almost the full 6years.
Not really sure how I feel, relieved to have finished with the drugs however slight anxiety about the future. How long before those pesky CLL cells start to multiply? How will I cope with Watch and Wait (Worry)? Will I lose the weight that I attributed to the drugs?😂
I have a bone marrow biopsy scheduled next week to determine the extent of the cells and then I will just try to live my best life.🙏
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Elizabetha
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Elizabetha I stopped Ibrutinib last December because of an episode of Afib, and so far all fine 🤞and bloods normal. I was initially concerned, but now I just ignore it until looking at my latest bloods.
Elizabetha I have just seen on the CLL Support latest email that on 26/11 at 14:00 they have a webinar on FLAIR and STATIC, so definitely worth a listen.
Active monitoring seems even worse a term (if possible 🤣) to me! It sounds like we should be on duty 24 hrs a day investigating every niggle rather than living our lives with CLL in the background. I live with CLL, I am not CLL. Sorry rant over 🫣
Well done Elizabetha and thankyou for your message. I am about to start the same medication that you have had. I hope it won't be for 6 years! I'm assuming that your lymph nodes have shrunk and your blood count regularise? I hope you can enjoy some drug free years. John
Hi John, no enlarged nodes anywhere. My spleen is back to being a normal size and my bloods all in the normal range. The drugs definitely worked for me with very few side effects.
I initially took the Venetoclax in the morning and the Ibrutinib in the evening however switched them around as I suffered from bad nausea from the Venetoclax. I was fine once I took it in the evening as I slept through the nausea.
CONGRATULATIONS! Thank you for being one of the pioneers to us all and completing this trial. You are truly blessed and I hope everyday is filled with happiness and knowledge that you helped so many by being brave, courageous and successfully in completing this trial. You will be in my prayers for continued success and blessings too.
Bless you, Elizabetha 🤗. Thank you for updating us! NEGATIVE MRD- that's FABULOUS!! I'm so happy for you. Six years is a lot of time on these drugs. Thanks to brave souls like you, everyone benefits from the knowledge we gain. I pray your negative MRD remains so for a very long time. You've certainly earned it 😊.
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