Day+25 – Friday

Today was the first day I was able to stop two of the many drugs I’ve been on which I’m hoping will help me to start feeling even more normal than I am already. No pain, no fatigue just a little out of condition which can be remedied by stepping up the exercise at some stage. My doctors would say they told me so – as you know I was very scared going into this but both Michael Dickinson and Con Tam had no worries whatsoever, and even my prospective transplanter Professor David Ritchie from the Royal Melbourne, who has been pretty keen to give me a bone marrow transplant for the past 9 years, thought this was an important thing to try before maybe having to head down that route if it doesn’t work. Goodness knows how many times my poor prospective German donor has been put on standby! Which reminds me of one of my favourite pictures to show when I present to patient audiences. Find a doctor, or several (!) you trust, understand your disease and advocate for the best treatments for yourself given you’re the one with the most skin in the game. However:

So goodbye to allopurinol (kidney protection) and fluconozole (to ward off potential fungal infections which can be a risk after CAR-T) and back up to 3 tablets a day for ibrutinib from tomorrow. It means I’m now only on that and Bactrim (a protective antibiotic), vacyclivir (to ward off shingles) and vitamin D which I’ve been taking for some time since I haven’t been outside as much. I thought I might be on some weird cocktail for a while (like you have to be post stem cell transplant) but no with the exception of Bactrim, I’m back to just what I was on pre-CAR-T less than 4 weeks post infusion.

Because CAR-T in CLL is so new there are not many patients who have shared their stories in this form which is why I wanted to try to share my experience so that others may have some idea of what they’re facing. The most famous blog is by my good friend Dr Brian Koffman who is the Founder and Medical Director of the CLL Society – here is a link to that which I referred to so much over the past few weeks:

https://cllsociety.org/car-t-blog/

On Thursday night I was chatting with another patient in the US who is considering this treatment when she suggested I join their Orange County support group because the time difference worked for Australia so I found myself on a zoom link up with friends on the other side of the world telling my story and learning from theirs. This is Brian’s own personal group, although his CLL Society does great work running support groups across the US. It was great to see him and his wife Patty as they’d been so supportive of my decision to do this. And hello to all those who are now following the blog from that. One good thing about Covid is that it has brought so many of us together via technology in a way that we never could have imagined previously. So now I’m an official member of the Irvine Support Group in California which tickles me pink!

When I was on Day 3 of chemo and sitting in the infusion chair I did an interview with the Leukaemia Foundation who were presenting the National Action Plan and the work of the Blood Cancer Taskforce to their supporters. They’ve shared the recording with me. It’s worth watching it all the way through if you’re in Australia as it’s so relevant to the future of treatment for blood cancers. It’s presented by Stephanie Moran who is their Head of Major Supporters. Tim Murphy, their General Manager begins by outlining the work we’ve been doing, then it’s a recording of me because the actual presentation took place on the afternoon of my CAR-T infusion so I couldn’t actually be there live (as much as I wanted to be), another patient shared her story and then Professor John Seymour from the Royal Melbourne who is Head of Haematology at the Peter Mac and the Chair of the Blood Cancer Taskforce was the final speaker – they had technical issues but I think it works fine without the video (and mine survived so that’s the important thing!). If you just want to skip to my bit – that starts at around the 13’50 min mark.

https://www.leukaemia.org.au/get-involved/other-ways-to-get-involved/supporter-seminar-series/

Oh and my sister Nicola is walking 60kms to raise money for the Peter Mac, a feat for any of us but particularly her as she is doing it on her own and was born with Ushers syndrome which means she is profoundly deaf and legally blind. I’m so proud of her.

Here’s today’s update

https://my.unitetofightcancer.org.au/nicola-danielson?fbclid=IwAR1sVV_eI7RqS_xLR3RQT-vZWcjF8NGUBaZx4mdf0ifauBHZmceQ7A_X_mk

Back with the children today and looking forward to another weekend with them ahead of big day 28 and all my screening tests on Monday. It’s a beautiful sunny day here – but this is Melbourne so it won’t last long!

Have a great weekend everyone!