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