Sword of Damocles

Day +31 – Thursday

I’m really sorry that I’ve needed 24 hours to process yesterday’s news and, while I bury the lead check out my new hairdo as cut by my 10 year old daughter Natasha.

I went in to get my results on Day 31 and was met by Carly, the trials nurse who spent time with Nicholas and I while we waited for Con Tam to come in on his day away from the hospital. She could see me trying to read her and kept changing the subject. It was strange thinking that she knew my results as would a lot of the doctors I know at the Peter Mac and part of me wanted to get on with it and the other part didn’t want to know. I haven’t been drinking at all over the past 6 weeks but may have had a couple of drinks on Wednesday night – I was a mix of emotions – in fact I did an interview with Lymphoma Australia which nurse Donna will share with me and I’ll put up on here at some stage but I was trying to temper my excitement with the knowledge that if they found cancer cells in my bone marrow biopsy, it wouldn’t mean it hadn’t worked, but I knew it would be disappointing as those I know with CLL who have done well, and in particular those in the early trials who have not relapsed years later after their CAR-Ts, had no detectable disease at day 28.

Con arrived in his civvies (he is one of the most stylish dressers I’ve ever met and I rarely see him without a suit and pocket square so it was funny to see him in jeans!). I couldn’t read him at all. We got in the room and he said – it’s the best news, no detectable disease. Not a single cell found. I started crying. Nicholas captured the moment he told me – we were going to film but I chickened out and, to be honest, it just felt like one of the biggest and most personal days of my life so wanted to keep something for me. Just wow – I still can’t believe it. I was overcome with emotion, my mind was racing – Con and Carly gave me a hug – yes I know it’s Covid days but we’re human. It was just so exciting and I’ve never had this news in Australia. The last time I was told I had no detectable disease was when I was in London in December 2016, sitting in Pizza Express with the children and my friend Liz Corbin near the BBC’s Broadcasting House. Martina, my trials nurse then, rang me and said that, after 11 months of full dose venetoclax my latest bone marrow (yes the one with my 10 year old in the room) had come back clear. That was momentous but this feels even more.

In 2016 I didn’t know some patients in early trials were developing resistance to venetoclax, I didn’t think it was the cure but I did think it had been worth travelling around the world for, given that even the strongest chemo we give CLL patients hadn’t been enough to get rid of my disease. But this feels different – I felt the CAR-T moving around my body, cleaning out my lymph nodes and my bone marrow, from my jaw (yes funny that it had a spot there given how much I talk), to my neck, to under my arms – it was killing cells not being detected on the CT scan which was clear going into this and coming out. It’s such early days but, as Con said, this could be my cure, it may not come back – we won’t know for years but I’m so optimistic that my incurable cancer has just been cured, that the CAR-T has got to every last cell, that there isn’t one rogue mutant thing ready to start replicating itself and get the better of me, that I will be here to see my children grow up. It changes everything. Nicholas captured the moment in pictures before giving me the biggest hug.

I was overcome with emotion and had an hour long neurology assessment to compare to my baseline going into this. It was so hard to focus on all the tests and questions and Dr Roberts Akhtvers was very patient with me. My brain was exploding. The good news was he gave me the results and my brain function was exactly the same as it had been a month earlier.

I’d briefly called my mother, my children and their father and I was just desperate to ring all those who’ve supported me through this, indeed I did that through the night including speaking to Brian and Patty Koffman and lovely Jennifer Creager. I wanted to make sure they all heard it for me before I started sharing more widely.

And I felt a need to go to Church. I’m a bit of an Easter, Christmas kind of girl with the children but I really am filled with gratitude and I want to make sure I make the most of this gift, not just by continuing to help other patients access treatments like these, but by being the best person I can be for my children and all those around me. So at lunchtime yesterday I wandered up on my own to Christ Church at the end of the street. Sadly it was closed because of Covid restrictions but I came across lovely 94 year old Norm and his wife June in the potting shed. It was their first day out for a while and I told them why I was crying, how thankful I am and why I had come to the church.

They urged me to go into the garden of remembrance and say a prayer there which I did. I thought of my Dad, who died suddenly just before I moved to London in 2015. I’ve felt him with me through this and I know he was with me yesterday. When I returned to Norm and June I said that when the church reopens I’d bring the children and we’d celebrate with them. Norm said he was a former engineer who had been treated for Leukaemia at 37 and survived. I asked what his secret was, he looked so well and full of life and he said the love of a good woman, and gave June a hug. Felt like fate to have met them – what a joyous day.

32 thoughts on “Sword of Damocles

  1. Openly crying tears of joy here!! Every best wish! Continuing the Apollo theme that has been in my mind since you lit the chemo fuse: “A huge step for a brave woman, a giant leap for all of us!!” Thanks so much for taking us on the journey- Go well! Phew!! 😅

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    1. Thanks Mick and thanks for being on this with me – I’m so relieved it’s good news – would have felt guilty taking you all through this with me if it hadn’t been! This is the future of medicine – reengineered humans, just incredible technology (and the great thing about CAR-T, unlike transplant, there really isn’t an age limit for it so it has very positive uses in CLL). Hey ho – will leave a more considered post on all of that for another day! Much love, Deb x

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      1. Dear Deb from over here in Florida USA …whew… this is super GREAT NEWS!!! Congratulations to you!!! and family… you got through it! For me to hear you say it’s good for all ages gives me hope! At a young 71, I am at my crossroads after a smorgasbord of cocktails since 2009…and after 6 years of oral meds (ibrutinib & venclexta) now once again relapsing I have hope!!! I follow CLL Society and I think The Kaufmans ?!? are the angels that connected us on email !?!

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  2. Deb, I am thrilled for you and your family. Sending you all of my love along with virtual hugs from Canada!!! ❤️❤️❤️

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  3. Oh Deb… I can barely believe what I’m reading. What a fantastic result after your nothing short of amazing commitment to this experiment. So many decisions you’ve made, so many sacrifices. Awesome woman. Enjoy your euphoria. Much love CQ
    p.s. at least no need to scramble to hairdressers asap!! Tash has mastered it.

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  4. Oh Deb, this is such wonderful news. Tears of joy. Go and enjoy that beautiful life of yours. Thank you for letting us be on this journey with you.

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  5. Amazing news! I am so delighted that words fail me. ❤️That’s as close as I can come to expressing my emotion with tears running down my cheeks

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  6. Deb,

    Thought you would like this. All but one CLL patient who reached CR were still in remission 99+ months out and the only one who did relapse was 59 months out.

    Looks like you are gonna see your babies have babies!

    Wonderful news.

    Brian

    From: abtandmedotcom Reply-To: abtandmedotcom Date: Thursday, October 22, 2020 at 4:08 PM To: “bkoffmanmd@gmail.com” Subject: [New post] Sword of Damocles

    deborahsims2015 posted: ” Day +31 – Thursday I’m really sorry that I’ve needed 24 hours to process yesterday’s news and, while I bury the lead check out my new hairdo as cut by my 10 year old daughter Natasha. I went in to get my results on Day 31 and was met by Carly,”

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  7. Thankyou for documenting your journey through treatment. You give all of us with this disease such hope for the future. Truly a brave lady, Congratulations!

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  8. “I’ll have what you’re having thanks”
    Dear Deborah, I have been following you on this journey of yours, I feel as though I’m only a few paces behind trying to keep up! You are an Olympian to me! and because of all your personal and informative posts, Ive used them as “evidence” to try and get myself on a trial as I am awaiting Stem Cell Transplant and really not quite ready for it as a sole parent to an energetic 5 year old.
    I am so so pleased for you, and for your family, huge congrats and lucky us – in this day and age that there is so many more options out there than several years ago.

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    1. Billie if you’re in Australia my trial is still recruiting – there are only 10 places and I’m patient 6 – I can’t believe it wasn’t filled instantly – opportunities like this are rare. Ask your doctor to get in touch with Michael Dickinson at the Peter Mac to see if you’d be eligible. It really is only one month of your life and a lot easier than transplant – and having CAR-T doesn’t rule out transplant but on my trial transplant does rule out CAR-T I think.

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      1. Thank you so much for the info, Im in Albany (W.A) my specialists are in Perth, I thought that maybe the requirements for the trial you are on are for Ibrutinib responsive/ stable however I have just come off Ibrutinb after 18 months as I was no longer responding, now on Venetoclax and Loxo305.
        I will let my specialist know this information, cheers.

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  9. WOW! Just WOW.

    I had to quickly scroll to see the results as I couldn’t take the suspense to read the lead up!
    So happy for you.. I lost my mum to AML just over 1 month ago after she relapsed from transplant in March 2019… I look forward to seeing some great progression in saving lives for all types of Leukaemia so families don’t have to go through such heart break.

    I have everything crossed for you that you continue your recovery and enjoy this next phase!

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    1. Oh I am so sorry Karli that’s terrible. Sending you hugs and prayers. I’m sure she did everything she could not to have to go. One thing which has got me through a few tough years is the memory that when I was at my sickest (ironically before I was diagnosed 10 years ago) I had pneumonia which was misdiagnosed and I felt myself slipping away at home. I was just so sick and I remember watching my boys rolling around outside my bedroom (my youngest was only just crawling) and thinking I’m so sorry I’m not going to see you grow up but I’m just so sick and I need to go. I felt a calm come over me and I wasn’t fighting anymore. An ambulance came not long after and I was rushed to hospital, doctors said I only had a couple of hours left – it’s given me a lot of comfort that when the time comes we stop fighting and there is peace. I’m so sorry you’ve lost your Mum, but like with my Dad I’m sure she will be with you always. Thank you for your kind words and sending love and prayers for your family.

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      1. i have been checking in regularly to see if there’s any further updates.. hope you are doing well and enjoying time with your family!

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  10. Wow Deb! What amazing news to wake up to this morning. I’m so incredibly happy for you. I can only imagine the emotions you are going through right now. All that worry, fear and anticipation has been worth it. Congratulations, you amazing lady xxx

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  11. Oh, the best of news Deb! Like others, I could feel my eyes welling up with tears as I rejoiced with you.

    I’ve been following your blog & other CLLers’ blogs since I was diagnosed with SLL in 2013 at 67. I started off with revlimid & rituxan in Jan 2014 & then was switched to ibrutinib & rituxan in April 2014.

    How well we patients understand your apprehension as you waited to hear your report from your doctor and his staff. We try to read their body language as they approach hoping for the best but scared to death of the worst. I could feel my body tensing up as I read along sensing your mixed emotions.

    As I read your blog to my wife this morning, my words caught in my throat as I read your words, “And I felt a need to go to Church … I really am filled with gratitude” We rejoice with you and give thanks to God for your excellent results and pray for continued good reports.

    Who knows, CAR-T may be in my future, too.

    Lynn and Shirley
    (West Texas)

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  12. Deb, this is such great news. I hope you are available to share this news with our group next month to give people hope that CLL can have a positive outcome. Even after multiple failed treatments.

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  13. Such wonderful news for an amazing woman and a true pathfinder, leading the way. HOORAY. and a few tears of joy on your behalf.

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