3 months results

Day +90

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.

Much love
Deb and kids

7 thoughts on “3 months results

  1. 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

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  2. 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!!

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  3. 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

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  4. So happy to hear your good news Deb… sending you much love and best wishes for many happier healthier years to follow 🙏

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  5. 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! 🤗

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