There really is a rainbow before me. It’s 13 months since that magic elixir winged its away around a covid ravaged world to give me a fourth chance of life when I was quickly running out of options. I know I’ve been absent but rest assured if things had gone pear shaped I would have let you know – and my family know to update here too. I’ll never archive this blog – it’s here to give hope to others in a way that I struggled to find when I was diagnosed 10 years ago. And it’s here for my children and their children to read to understand a time which has had a profound impact on all our lives.
My 6 month bone marrow biopsy and scans were all clear and I made the decision to come off all drugs at that point in March. Ibrutinib was being used to nurture and protect my fledgling mutant T-cells but there was no evidence being on it long term would change the outcome or length of remission, and having developed resistance to venetoclax because of prolonged use, and not tolerating ibrutinib as well as I might have hoped, I decided to stop taking it and give my body a break from the years of drugs which have kept me alive. It meant that my 9 month bone marrow biopsy and 12 months were crucial. I’m very thankful to say that they were both UMRD – no detectable disease at the most sensitive level. This is the first time in 10 years since diagnosis that I’ve had a drug free remission – I’ve either been on drugs or relapsing off them the entire time I’ve lived with CLL so this is nothing short of miraculous.
The Leukaemia Foundation updated their story on me in their latest CLL news:
Last month on the anniversary of my “rebirthday” Nicholas took this photo of me in front of the calendar still stuck on the kitchen wall, he diligently marked off for the first 100 days post my infusion. Even lockdown roots couldn’t wipe the smile off my face.
It’s been a massive year on the work front, despite being forced to shield at home for most of it. I have had to work remotely as I’ve been unable to travel to Sydney since June. I had the huge honour of being appointed to the Advisory Council of Cancer Australia by the Federal Government. I’m looking forward to representing all cancer patients on this body which is the umbrella agency for cancer policy in Australia. My focus, as those of you who have followed my blog will appreciate, is on access to clinical trials and novel therapies. If there’s one thing I could achieve with this work it would be to make sure all patients get the level of detailed prognostic testing I personally paid for a decade ago which still isn’t standard of care in Australia but has helped guide my treatment ever since. We can’t make the most of precision medicine without precision testing so it’s something I feel passionately about.
The Leukaemia Foundation’s Blood Cancer Taskforce is doing an amazing job promoting this message and I was delighted to Light the Night for them last night which the children. I purchased 3 gold lanterns in memory of 3 CLL patients we lost before their time – Pete, Chris and Lisa – all of whom have had a profound impact on my decision to have CAR-T at a time when it is still highly experimental. I think about them all the time. Particularly Pete, who died in his 20s which is practically unheard of for a CLL patient, and I can’t wait to give his Mum, who has become a close friend, a hug in a post Covid world. She was kind enough to call me while I was trying to decide whether to enter the clinical trial to remind me that I had to make the most of this treatment before my disease became too aggressive.
Natasha had fun making Light the Night cookies and her brothers had fun eating them!
Post cancer life (and that’s how I’m thinking of it) has involved keeping a promise that when I had no cancer the children could have a much longed for puppy. Well one puppy became two and we welcomed Brittany brother and sister Bean and Boo into our home this year and it’s like we’ve never been without them.
So now my phone camera roll is full on dog photos rather than children’s! They bring us all a lot of joy.
Next for me is trying to get through the next few months without contracting Covid. We have high case numbers here in Melbourne and I had an antibody test which showed I have no measureable immunity – it would have been incredible if Pfizer had managed to do something given I have no B-Cells so I’m now starting a course of Astra Zeneca. The main thing will be for me to take a lot of care around the children as they return to school but return to school they must. They haven’t had a full term at school since 2019 and, while it’s risky for me, I just can’t bear to think of them missing any more time – so this will be me giving them dinner for the next few weeks until summer hopefully puts covid to bed and Melburnians become vaccinated.
I’m hopeful we’ll get to 90 percent which means I’m at risk from fewer and fewer people who have refused to do the right thing and protect those of us who are vulnerable.
Finally I can’t leave you without a skiing photo – one blessing about lockdown this year was that when the lifts stopped running I found a new sport in Cross Country skiing – absolutely loved it. Here’s to continuing to live my best life and pay the gift I’ve been given forward by helping others have an easier time of it and remember to get some turns in for Pete x
12 thoughts on “What a difference a year makes”
Wonderful news. So happy.
Thanks Brian – following in your footsteps and so privileged to count you as a friend xxx
Absolutely delighted for you. Your advocacy for other cancer patients is amazing and so so important. Much love to you, Deb xx
Thanks Sam – I cannot wait to catch up with you in England – it’s been way too long!! x
Beyond words!! I know there will be lots of people feeling emotional reading this so I just say (for about the 20th time!) “Thanks so much for showing us the way Chuck and for looking back to encourage those of us just starting the journey- your courage gives us all hope!!” Ad astra!
Thanks Michael and thanks again for sharing this journey with me and giving me so much support! Hope all is going well for you x
Hi! I just mentioned your name yesterday and was wondering how things were going. So glad to hear things are going well for you!
I have been off all meds for my CLL 2 months due to the fact I that I had signed up for a 50/50 randomized clinical trial for either loxo-305 or idelisib/rituxan. I went thru these last 2 mos. testing for it. The computer chose to offer me Idelisib/rituxan …I declined. I really was hoping for Loxo 305(oral pill) as we are 4.5 hours away from trial and the pill afforded only having to show up every 28 days. So now locally last option is Duvelisib. But if I fail that I would try Car-T.
Sending my Best, Sharon A
Many congratulations Deborah, great news for you (and us all ! ) , thanks for being our “pioneer” in so many and brave ways ! Bram de Feijter, The Netherlands
Deb – you and Brian Koffman offer much hope for those of us on the CLL journey that may bring us to CAR-T. I’ve been reading your blog, Brian’s, and Terry’s since I was diagnosed in 2013 and began treatment in 2014. Now 7 years on ibrutinib – “a pill a day keeps the cancer away.”
Thrilled with you continued good reports!
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That would Terry Evans’ blog I’m referring to.
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Thanks for “heads up” re Terry’s blog … a gem I had missed!!
This is great reading for me, gives me great hope. Thank you for sharing. Makes me hopeful for my next step.
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