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Mutant Mum

So it’s been a while and so much has happened but before I bring you up to date let me fill you in with where I am right this minute.   It’s day minus 6 of my CAR-T clinical trial at the Peter Mac Hospital in Melbourne and it’s day one of my lymphodepleting chemotherapy regimen which will lower my immune system in preparation for my reengineered t-cells to be infused on day zero which is next Tuesday.   This procedure will officially make me a genetically modified human (there’s even a register I have to go on in the US and my kids are very excited by the idea of me becoming mutant Mum – we had a great conversation about what superpowers, other than a cure for my incurable cancer, this might give me but more on that later).    

So here I am just starting full dose Fludarabine and Cyclophosphamide (hold the rituximab).   I’ve held off sharing this part of the story until the chemo started because I didn’t want to jinx it – but it’s well and truly happening now.   And I don’t mind telling you that I’m freaking out but I do seem to be the only one in my team who is so hopefully this is all just part of processing worst case scenarios and all will be well. My doctor Professor Con Tam even looked slightly bemused as I got him to witness my advance care directive and my will this morning.   It’s very much like the build up to taking ABT-199 for the first time – that’s now an established approved drug (venetoclax) and has even now got FDA approval for frontline treatment but when I took it in 2015 not many humans had.  I’m pinching myself that I’m doing yet another first in human clinical trial – this time amongst the first 24 in the world so I am pretty scared.   

I’m hoping I have made the right choice having CAR-T now and I’ll fill you in with how I’ve reached this point over the next few days. I’ll forever be grateful to venetoclax for giving me the almost 5 years to get to this stage, but for now, it’s time to rest and let that potent chemotherapy do its job knocking back my immune system which is pretty much as good as it’s ever been.   If you could see my bloods you would not know I have leukaemia – everything is in the normal range and ibrutinib, the drug they’ve used to get me to this stage, is doing such a brilliant job that they had trouble finding CLL in my bone marrow – hence the mental struggle I’ve had reaching this decision which I will share with you as I bring you up to speed with the past 3 years.

25 thoughts on “Mutant Mum”

  1. Oh Deborah i am so very sorry to hear what you have been and are currently, going through.. Last i heard from you, all was going quite well. I am sending you my very best wishes, and prayers, to let you know that there are many of us CLL ers out here, who are following your progress, and hoping you and your family know how much we all care. xx🙏xx Michelle Turner

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  2. I’m so glad to get an update on you, I have been wondering how you are doing. I can’t wait to read more about your decision process and how your CAR-T journey goes. Stay strong! You can do this! Message me on FB any time if you need to talk. – Jennifer

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  4. You have been through so much in your life Deb. You are a fighter and I know you will fight forever. Hang in there, let me know if you would like any company or someone to off load to. Also happy to drop off meals but I don’t know where you are living anymore. You are in my thoughts – you have got this

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  8. Hi Deb, what a journey you are on! I’m thinking of you and your family and praying for your treatment to go well.
    Find love, Helen xx

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  11. Deborah you are a super hero.
    Looking forward to positive updates and sometime in the future you coming to Ireland to share your story.

    Best of luck

    Michael

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  14. You have got this Darling. You are surrounded by so much positive energy from all over the world. You have fought long and hard as a patient advocate now it is your turn, put your cape on and show the world your super powers. I love you so much and wish we could be together, but I am beside you in spirit. 💕

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  15. I am sending you love and strength beautiful girl. You got this 😘😍 so honouring of other woman as well that you share and put yourself out there for testing 🙏💓💖

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  21. Have followed your journey with great admiration . Thanks Deb for your altruistic pioneering

    spirit , you are great.

    All the best .

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    1. My pleasure thanks for the kind words Charles. It’s helping me focus on something other than my own mortality which is a good thing! I do like that it helps others – others have certainly helped me. Wishing you well too my friend xxx

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  22. You are my hero and as a brave pioneer you support so many in your quest to for a cure and to make treatments available to all of us , Sending you positive vibes to banish these remaining CLL cells into oblivion. You will win!!.

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    1. Thanks Nick – gosh that great meal in an Italian restaurant behind the BBC with Charlie seems like such a long time ago! Feel so bad that I haven’t been able to help the CLL Advocates network…you are the awesome one for all you do both here and with Leukaemia Care. Sending hugs and looking forward to the next time we meet xxx

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