It’s Day +90 and I know I’ve been absent but I got a little bit of a shock at my month 2 consult and wanted to wait to see what would happen at my 3 month bone marrow biopsy before updating further.
4 weeks ago I was told they’d reviewed my 28 day sample and had found some CLL cells – still below the technical definition of undetectable so it was right to say I had no detectable disease by the usual standard of 0.001 but at UMRD5 I had 0.0002 detected. I was completely thrown and must admit it’s been a really hard 4 weeks waiting for Friday’s test and today’s results.
I was fearing the worst. My understanding was that the best predictor of long term remission and possible cure is the day 28 results. But this was a new CAR-T product, a younger batch of cells than would normally be infused and so maybe there was a delay in them clearing out all the CLL. So over the past 4 weeks I’ve joined the CAR-T failure group on Facebook to keep track of what options I might have if I have failed – to put this in context there are 2,000 patients worldwide on the main CAR-T group, when you go to the Life after CAR-T Changing Gears site there are only 200 and it’s a pretty hard group to be part of.
The average patient who fails CAR-T lives for only 7 months and the best chance of survival is a bone marrow transplant, something I’ve been trying to avoid for the 9 years I’ve been living with this disease and it is exactly 9 years today that I was diagnosed. But getting to transplant if your disease takes off would be a gift in itself at this stage and sadly I’ve seen CAR-T patients die over the past month because they just couldn’t get there including a mother of 8 year old twin boys this week and it’s just heartbreaking so I will never complain about trying to avoid a transplant again.
As you may have gathered by now then, walking into Con Tam’s office today, I had the biggest millstone around my neck. I was incredibly stressed, more so than I ever remember being while waiting for results. I had only shared with a few people how big this day was. Con told me there was no detectable disease at the absolute lowest level in my bone marrow this time and that the CAR-T cells must now have cleared up the last of the CLL – it’s truly miraculous and it’s still not sinking in. I can’t get too excited because I can’t go through what I’ve just been through again, it’s about not overreacting and riding the rollercoaster as easily as I can. So sorry for not including you over the past 4 weeks but it wouldn’t have been pretty and I didn’t need anyone else worrying about me the way I was worrying about myself! It was the first time I’d truly let myself think I could be cured and this is over but I crashed badly when I got the blip in the news at 2 months and I won’t make the mistake of getting too excited again. I’d also made sure I’d caught up with lots of friends and had been drinking far too much so was expecting my liver results to be shocking (my liver is completely fine thank you very much but probably a good time to go back to being sensible now that I can!).
What was nice was striking while the iron was hot and fitting in a bit of travelling now that lockdown has been lifted in Victoria. The children and I drove to NSW to stay with my Great Auntie Joanie and my cousin Kylee, then we did a spot of camping on the beach (I was back to making memories!). My eldest Cameron turned 16 this year but hadn’t been able to sit his learner’s permit because of lockdown and he passed his exam on the drive back. Am so excited to have seen him achieve this milestone – up there with learning to walk and ride a bike. As one friend said to me unlike those feats, he’ll remember this one forever.
So here are a few of our holiday snaps:
You’ll also love the T-Shirts my Mum and sisters had made to celebrate my results.
And we ended the year with a family Covid test to make sure the head colds we’d all caught while camping weren’t anything more serious ahead of my bone marrow biopsy on Friday.
Aside from the cold, which I managed to shake off, I’m feeling completely normal. I have no fatigue and I simply take my ibrutinib, Bactria and vacyclivor daily and will continue to do so for another 3 months just to make sure the T-Cells are as protected as possible.
Thank you for all your support, it has meant the world to me and a special thanks to my doctors and trials nurses who have fought so hard to get me to this stage, along with the scientists who are working tirelessly in their labs, we blood cancer patients owe them a debt of gratitude. It’s early days but CAR-T could be a cure for so many of us and I’m optimistic most of those diagnosed today with CLL will not die from this clever and insidious disease.
Wishing you and your families a very Merry Christmas and hoping 2021 is kinder to us all.
Deb and kids
14 thoughts on “3 months results”
Very concerned when we did not hear anything from you. This post from you and the great pictures makes the wait well worth it. Merry Christmas and may the LORD bless you in the New Year.
Deb Thankyou for sharing. Sorry to hear about the worries of the past month but happy for you and your family to hear of your good news bmb results. This disease sure can take us on a roller coaster ride. Here’s to going forward and a safe and happy 2021 where the world can get on top of covid19 and we can continue to get on top of cll. Cheers and Merry Xmas
Just read the post and am so pleased that the news has been so good – but also learning from your reflections on putting all the eggs in one place!! Again I am so grateful from the learnings you give to people like me so freely and generously. In some ways your fearful last month is a great lesson to all of us and perhaps a balance to your wonderful optimism and support for we lesser mortals all of whom have been buoyed by your “travels”!! We of the “club” have a battle on our hands and obviously look to our generals for encouragement, experience and courage. For me, I just want to say “thanks” again! I am grateful for my Christmas gift delivered via Greg Hunt and I travel very hopefully and very strengthened, not in any way discouraged by your speaking the truth. happy Christmas to you and yours, sorry we missed you in Sydney and may 2021 be full of zero UMRDSs!!
I don’t know if you saw my previous comment but I messaged to see if everything was okay. I am so relieved that you are now in the realm of “good news” but completely understand the rollercoaster and the way of protecting yourself to not get your hopes up.. continue to make memories with your precious children & celebrate the good news for what it is, good news!!
merry christmas to you and your family xx
So happy to hear this news. Best to undecreact to all news. CLL is full of ups and downs on a very long ride.
So happy to hear your good news Deb… sending you much love and best wishes for many happier healthier years to follow 🙏
So glad to read this good news. I can’t imagine what you must have been going through prior to this result. What a great way to enter the new year! 🤗
Happy New Year!!! Best wishes!
I could DM you but somehow I like being able to write here. I have been thinking of you recently and today brought that home a little more. I hope that you are going okay and that the “move” to Sydney is going well. I just watched some of the videos from the CLL (USA) recent webinar on Car-T ( and especially the session by Sharon and Larry Salzman). They really gave a “human” insight to the process of having CLL and the ups and downs … sooo similar to you but it somehow drove home to me the fact that you did most of your stuff on your own. I really got something from hearing them talk (even if, hopefully my need for CAR-T is years and years away!!) and I was reminded of so much of the journey in this blog. I just want to say “Thanks” again and express the hope that you are well and happy in life … like you, they see the “healthy” times with CLL as the time to plan the next campaign!! Best wishes!
Oh this brought tears to my eyes Mick – thank you – it must be because I’m now off all my anti anxiety meds 😂. I’m 8 months in, the 6 months was all clear but Con gave me my results in a bit of a muddled way or I heard them muddled so it was a bit anticlimactic! There was a problem processing the sample but I heard problem with the sample so got myself in a bit of a state. A few days later and I was told I was still MRD negative. My 9 months bone marrow is in mid June so hopefully I’ll be able to update the blog with definitive results (like having a baby come to think of it!). Life’s good, loving Sydney, loving travelling again and loving life in general – I do feel like I’ve got the monkey off my bag or at least have outrun the Mountain Lion (see earlier posts!) for the time being. The longer it goes the more confident I’ll feel. I’m pretty anxious to get off ibrutinib, still not liking the side effects its giving me but that’s a conversation I’ll have with Con next month…time to get off all drugs I feel and enjoy a period of treatment free remission – hopefully permanently! Hope you’re well and we meet in the flesh at some stage. I’ll watch that webinar – thanks for the tip xxx
Off my back that should be! I like a good bag thought too 😛
Again i sort of like responding here – it is somehow quieter!!
I have seen your occasional comment on FB but only recently found this update
which brought us all up to speed – It was lovely to see the kids and puppy (no babies now!) and a peek at your support group!! It gives great joy to those of us who have followed the journey to see you looking really well and dancing till the wee hours!!
I am greatly appreciating the info from Brian et al re the possible lack of COVD vacc response and the sotrovimab developments (“…. I’ll have what Trump got!! – even if he is a nutter!!”).
If Sydney ever gets out of lockdown we must organize an ale for your 10th anniversary!!
Best wishes and thanks for all you share!!
(ps A Melbourne joke that Sydneysiders are just understanding: Q: “What’s the hardest part of a 7 day lockdown? A: “The 7th week!!”)
Hi Deb – Was thinking about you and wondering how you’re doing, and here I found your posts I had missed! As for creating those memories… the pics of you and the kids enjoying Sydney are sheer perfection. BTW my teenagers won’t be seen in any pics, so will have to find out how you bribe yours. Hope you’re continuing to feel strong, living life and remaining two steps ahead of this thing that brings us all together. Best, Wup
Thanks Wup! Have finally updated the blog – all going well. And yes you’ll see in the latest update the boys are pleased the focus of my camera has turned to the new puppies – hope you’re well too x