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:

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You’ll also love the T-Shirts my Mum and sisters had made to celebrate my results.

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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

Day +31 – Thursday

I’m really sorry that I’ve needed 24 hours to process yesterday’s news and, while I bury the lead check out my new hairdo as cut by my 10 year old daughter Natasha.

I went in to get my results on Day 31 and was met by Carly, the trials nurse who spent time with Nicholas and I while we waited for Con Tam to come in on his day away from the hospital. She could see me trying to read her and kept changing the subject. It was strange thinking that she knew my results as would a lot of the doctors I know at the Peter Mac and part of me wanted to get on with it and the other part didn’t want to know. I haven’t been drinking at all over the past 6 weeks but may have had a couple of drinks on Wednesday night – I was a mix of emotions – in fact I did an interview with Lymphoma Australia which nurse Donna will share with me and I’ll put up on here at some stage but I was trying to temper my excitement with the knowledge that if they found cancer cells in my bone marrow biopsy, it wouldn’t mean it hadn’t worked, but I knew it would be disappointing as those I know with CLL who have done well, and in particular those in the early trials who have not relapsed years later after their CAR-Ts, had no detectable disease at day 28.

Con arrived in his civvies (he is one of the most stylish dressers I’ve ever met and I rarely see him without a suit and pocket square so it was funny to see him in jeans!). I couldn’t read him at all. We got in the room and he said – it’s the best news, no detectable disease. Not a single cell found. I started crying. Nicholas captured the moment he told me – we were going to film but I chickened out and, to be honest, it just felt like one of the biggest and most personal days of my life so wanted to keep something for me. Just wow – I still can’t believe it. I was overcome with emotion, my mind was racing – Con and Carly gave me a hug – yes I know it’s Covid days but we’re human. It was just so exciting and I’ve never had this news in Australia. The last time I was told I had no detectable disease was when I was in London in December 2016, sitting in Pizza Express with the children and my friend Liz Corbin near the BBC’s Broadcasting House. Martina, my trials nurse then, rang me and said that, after 11 months of full dose venetoclax my latest bone marrow (yes the one with my 10 year old in the room) had come back clear. That was momentous but this feels even more.

In 2016 I didn’t know some patients in early trials were developing resistance to venetoclax, I didn’t think it was the cure but I did think it had been worth travelling around the world for, given that even the strongest chemo we give CLL patients hadn’t been enough to get rid of my disease. But this feels different – I felt the CAR-T moving around my body, cleaning out my lymph nodes and my bone marrow, from my jaw (yes funny that it had a spot there given how much I talk), to my neck, to under my arms – it was killing cells not being detected on the CT scan which was clear going into this and coming out. It’s such early days but, as Con said, this could be my cure, it may not come back – we won’t know for years but I’m so optimistic that my incurable cancer has just been cured, that the CAR-T has got to every last cell, that there isn’t one rogue mutant thing ready to start replicating itself and get the better of me, that I will be here to see my children grow up. It changes everything. Nicholas captured the moment in pictures before giving me the biggest hug.

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I was overcome with emotion and had an hour long neurology assessment to compare to my baseline going into this. It was so hard to focus on all the tests and questions and Dr Roberts Akhtvers was very patient with me. My brain was exploding. The good news was he gave me the results and my brain function was exactly the same as it had been a month earlier.

I’d briefly called my mother, my children and their father and I was just desperate to ring all those who’ve supported me through this, indeed I did that through the night including speaking to Brian and Patty Koffman and lovely Jennifer Creager. I wanted to make sure they all heard it for me before I started sharing more widely.

And I felt a need to go to Church. I’m a bit of an Easter, Christmas kind of girl with the children but I really am filled with gratitude and I want to make sure I make the most of this gift, not just by continuing to help other patients access treatments like these, but by being the best person I can be for my children and all those around me. So at lunchtime yesterday I wandered up on my own to Christ Church at the end of the street. Sadly it was closed because of Covid restrictions but I came across lovely 94 year old Norm and his wife June in the potting shed. It was their first day out for a while and I told them why I was crying, how thankful I am and why I had come to the church.

They urged me to go into the garden of remembrance and say a prayer there which I did. I thought of my Dad, who died suddenly just before I moved to London in 2015. I’ve felt him with me through this and I know he was with me yesterday. When I returned to Norm and June I said that when the church reopens I’d bring the children and we’d celebrate with them. Norm said he was a former engineer who had been treated for Leukaemia at 37 and survived. I asked what his secret was, he looked so well and full of life and he said the love of a good woman, and gave June a hug. Felt like fate to have met them – what a joyous day.

Day +28 – Monday

So many fellow patients who, like me, are subjected to the Victorian procedure that is a bone marrow biopsy have told me they’re looking forward to this post. I have now had 28 bone marrow biopsies, and today’s day 28 crucial biopsy brings it to 3 in the past 4 months. I have quite the network of scars on my lower back – anyone for noughts and crosses? So today I’m bringing you my tips for bone marrows after a decade of getting them and I thought I’d also bring you some of the highs and lows just for fun – one of my favourite recently was the registrar who told me it was the first time he’d done this and introduced me to his supervisor and then I came to with the supervisor actually doing the procedure!

So my first bone marrow biopsy took place at Cabrini Hospital in late 2011 on a ward with 3 other patients. A young Piers Blombery (and frankly he’s still young) was doing his haematology fellowship and doing bone marrows is all par for the course. Dr Blombery has gone on to do amazing work on venetoclax resistance and I last saw him at the American Society of Haematology conference in San Diego…he looked slightly embarrassed when i said he’d been my first (sorry I just can’t help myself).

https://www.petermac.org/users/dr-piers-blombery

I didn’t know what to expect, this was pre internet sharing days and I went on my own – I’ve actually preferred to have this procedure on my own all the way through with a couple of notable exceptions. I was given a light sedative into a canula and went off to dreamland and can remember nothing of that marrow. It went well, with the exception of them finding that indeed my bone marrow was starting to be infiltrated by my disease which had started off lymphoma like in my lymph nodes but had now decided to set up camp in my bone marrow. With the exception of pain for a few days there was nothing more to it.

My second bone marrow was to check on disease progression 6 months later. I had another before I started chemotherapy in January 2013 and one to see if the chemo had worked well enough in April 2013. My doctor was actually told that I had no detectable disease and chemo was stopped after only 3 instead of the 6 cycles which is standard of care (we later discovered it was no detectable in the blood not the bone marrow which is a big difference and I began to relapse quite quickly). Because the decision was made that my next treatment would be a stem cell transplant (using a donor’s stem cells – this is the same as a bone marrow transplant) they started monitoring me every 3 months using a bone marrow, and sure enough it confirmed relapse.

The worst two bone marrows by far were in London in 2015 and 2016 (sorry Bart’s). Because mild sedation requires extra resources 95% of bone marrows on the NHS are just done with local anaesthetic in your lower back. Literally get on this table, pull your shirt up, tuck your knees under and let’s get to it. The first time I had that done was screening for the trial which bought me time to get to CAR-T. My mother was with me and after they had finished brutalising me she swept into the room with her bag on her shoulder and nearly caught all the slides on the table with my samples on them – I freaked out (still sorry Mum but it flippin hurt and I didn’t want them to have to redo it!). And again in London I’d brought my 10 year old son Marlowe with me on one of my fleeting trips to honour the terms of the trial and I didn’t realise that, because he’s a child, he would actually have to stay in the room with me so I found myself heavy breathing through it and trying not to make any noises that would show him how painful it was or scare him. This is how little he was at the time!

The best thing I did in hippy ‘soon to be Mum’ mode was join an active birth class in Islington North London when I was pregnant with Cameron. The techniques they taught me there to deal with pain have got through me quite a lot of the torture of the past decade (note to doctors and scientists surely there has to be a way we can get rid of bone marrow biopsies in this day and age?!). Anyway visualisation techniques are super powerful. My favourite one is imagining a wave crashing as you feel pain and riding that wave knowing that it’s going to come to an end and then recede – I couldn’t ride a wave to save my life but try the technique and see if it works for you. The other thing I like to do is wiggle my toes…this takes quite a bit of concentration and acts as a good distraction.

But by far the best thing I’ve ever discovered is the Green Whistle!!! So 5 biopsies ago I decided I’d had enough of going to a private hospital to pay out of pocket with my health insurance to be subjected to this procedure (by the way another tip if you do go to Cabrini is make sure you’re first on the list as you can hear other patients getting theirs done and it’s not fun!). By then I’d become an official patient at the Peter Mac so had my first here. My blood pressure is always low, it’s been a real issue over the past 6 weeks, particulary during CRS because it doesn’t give me that much room to play with when it drops. On the upside if I was in the least bit sporty I could have been an Olympic athlete…oh well. So I turn up at the Peter Mac (by the way I didn’t know you can use your private health in the public system and not have to pay out of pocket and it helps the hospital so I’ve put everything over the past few weeks on my private health – I’m pleased to use it for something since it’s so expensive and really hasn’t helped me much over the past decade!). My blood pressure was too low for light sedation so they suggested I use something called the Green Whistle. I’d seen this used by paramedics on the sporting field but had no idea what it was. Well wow, where was this all my life? The green whistle is an old anaesthetic that is inhaled called Penthrox. It is the best thing I have ever had in my life (sorry kids not counting you in this). You put your finger on the hole on the top, inhale deeply in and out and before you know it you’re off with the fairies. You are aware but so happy they can pretty much do whatever they want to you – and the best thing is it wears off really quickly so you’re back with the world and can drive home from hospital – and it’s another great Australian invention.

https://www.csiro.au/en/Research/MF/Areas/Biomedical/Health-and-wellbeing/Penthrox-green-whistle

Seriously if you’re in Australia, being tortured like this, try it – I wish I’d known about it years ago and frankly it makes me almost look forward to my bone marrows these days which is just as well given I still have one more before Christmas (at month 3 on the trial). I think you can still see me under the influence as I had my CT scan later this morning.

So Monday’s test have now all been done – CT scan, ECG – a ridiculous number of bloods and on that note please meet Sunny who is the Canula Queen in Pathology. Another tip for Peter Mac patients – even if you have to wait a little bit extra – if you’re getting a canula, get this amazing woman to do it if you see her on. Her work is renowned within the hospital and she hasn’t hurt me once.

So now we wait. Thursday’s the big day – I’m excited, nervous, worried that I feel so well, distracting myself by going back to work (online) and we’ll see what Thursday brings. If it’s no detectable disease there’s a good chance this may be my cure – I can’t even begin to think about how massive that would be.

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!

+Day 22 – Tuesday

I loved playing Bingo with my older relatives when I was younger so please humour me with my reference to Day 22. Not much to update today. I’m having trouble sleeping (gosh Australians would totally call me a “whingeing pom” at the moment but I am trying to tell you warts ‘n’ all and somewhere someone is probably freaking out about me sharing all this online!). I’m not anxious or anything and not really worrying about anything in particular I just think that my body is so busy dealing with the growing T-Cells that I’m not able to switch off. And while I think out of it – a shout out to Philip in France who has his CAR-T infusion today – hope all goes well.

Not getting enought exercise has definitely been an issue so today I went for a walk with my friend Nicole, all masked up, to collect an Ethernet cable following an interview I did with Charlie in London last night which was problematic. I didn’t realise I could use a fixed line from my modem to make the feed more stable than using wifi (learn something new everyday – technical friends will be rolling their eyes at this point). Anyway that was my purpose today and it felt like a good achievement to do an hour long round trip, get something practical and catch up with a good girlfriend. The walk wasn’t hard but when I got home I realised I was shaking – took my blood pressure and this was where it was at which is crazy!

Lots of water, something to eat and I’ve stopped shaking. I checked it a few minutes later and it was much better – still low but not as low as freaked me out with that reading! So here’s yesterday’s update with my friend Charlie from Brandcast Media and hopefully the feed will be better going forward.

https://www.youtube.com/watch?v=bZHNsT7DbpQ&feature=youtu.be&ab_channel=DeborahHenderson

Day +21 – Monday

Excuse the Top Gun reference but that’s the music running through my head as I leave the Peter Mac today having seen Professor Constantine Tam, the doctor who I’ve spent the past 9 years on this quite extraordinary journey. He told me at Day +21 I’m out of the Danger Zone – I had just enough Cytokine Release Syndrome for the CAR-T to be now hard at work and he laughed about my lack of neurotoxicity because he said he could tell I was the patient who actually had her baseline improve over the past 3 weeks. Maybe the blog has helped stave that off but, given other than dying, neurotoxicity was my biggest fear it’s good to hear that I’m out of the woods.

I also managed to get Carly, my trials nurse, to agree to a photo with Con and I – she’s been amazing. As I always tell patients considering trials the level of care and attention you get is second to none and Carly is one of my favourites (along with Sam and Martina at Barts!). This is actually my first photo with Con as my doctor rather than an interviewee. I’m looking forward to us returning to the latter in the not too distant future.

Speaking of music – Natasha was singing along to the words from Frozen over the weekend and said after she sang “a Kingdom of isolation” – wow that’s our reality isn’t it Mum? We’re still in lockdown here in Melbourne – it’s like everyone’s a cancer patient now, we have fines for non mask compliance and nothing other than essential retail open. The overnight curfew has been lifted but we’re still restricted to our 5km bubbles with no guests allowed at home. So the kids and I marked Light the Night on our own on Saturday, 2 years after we had the honour of being ambassadors for the Leukaemia Federation at Melbourne’s Federation Square.

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We found the whole experience of Light the Night very humbling. Seeing all these families holding Gold Lanterns marking those they’ve lost really choked us all up. Flash forward two years and my kids are really happy – their Dad Robert is doing an amazing job under difficult circumstances and their school has been very supportive too. I’ve only been able to spend 2 and a half days with them in the past 3 weeks and as much as I loved the weekend I’ve just had, it really took it out of me. I’m still neutropenic (at 0.9) and my lymphocytes are back in their normal range of 1.0.

Con said he would be very surprised if they find anything in my bone marrow next week and told me to relax and enjoy the ride! I can’t get my hopes up. I’ve been dealing with CLL and its trickiness for almost 9 years so I won’t count my chickens before they hatch (actually wrote won’t count my horses and realised that didn’t sound right – maybe the old brain isn’t that good after all).

Oh and speaking of which check out my new CAR-T bracelet – from medic alert – makes me feel a lot safer should I have a fall or be on my own and paramedics are needed.

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Meanwhile on the day that I checked out of 5A for hopefully the last time last Monday (Day 14) I did another interview with Lymphoma Australia which Donna Gairns, their Director of Nursing, has just shared with me. I look quite bright eyed given what I’d been through, make-up is a wonderful thing – I think you can also see how excited I was to be going home.

https://www.youtube.com/embed/fXGOVdE812E

Day +18 – Friday

Just a quick update to let you know all is well. I had a check up at the Peter Mac yesterday and they’re happy with my progress. Didn’t get any fresh blood results but they took more and are monitoring those lymphocyte changes. Hoping when I see Professor Con Tam on Monday afternoon for my next check up on Day +21 I’ll have more information about that. Then it’s just a week until we’ll know for sure when I have my bone marrow biopsy and CT scan on Day +28. It’s amazing to think I might be in Complete Remission from a one off infusion and find that out just 4 weeks later. I’ve had constant treatment for 6 of the past 9 years so a chance for an end to that would be a gift.

CLL was the first disease which CAR-T was experimented on in trials and some of the patients from the early trials are now 9 years out with no detectable disease. But the early trials showed only a 25% response rate and the CAR-T scientists moved onto concentrating on childhood ALL and Diffuse Large BCell Lymphoma where it had better response rates. The theory being that CLL patients are often heavily pretreated before they get to CAR-T and the disease itself does a job on our T-Cells so even when they’re reengineered they are so exhausted by the time they’re infused there is only a 50/50 chance of it working even with today’s newer CAR-T products. My CAR-T is yet an even newer generation – the T-Cells are younger, trial patients don’t have to have failed a stem cell transplant and we’re not so heavily pretreated. One day soon once it gets FDA approval this CAR-T may even be manufactured in Australia thanks to Federal Government Funding and our Health Minister Greg Hunt who has done so much for blood cancer patients. It means that those with aggressive blood cancers won’t have to wait for the cells to be sent to the US and back which takes time many don’t have. Bridging chemo often has to be used while that happens and that affects outcomes too.

More on the history of CAR-T can be found here

https://content.sciendo.com/configurable/contentpage/journals$002fahp$002f51$002f1$002farticle-p2.xml

For the past 10 months I’ve been on a drug called ibrutinib which I’ll continue on for the foreseeable future. As you’ll see from the paper below (which I think I may have already shared). Ibrutinib which has bought so many people time appears to have a synergistic effect with CAR-T therapy and one trial reported an overall response rate above 80% and the frequency of complete bone-marrow response with undetectable disease exceeding 90%. This is incredibly exciting and potentially curative. The deeper response, the longer the remission and if those CAR-T cells causing all sorts of weird pains all over my body at the moment kill the very last cell I’ll be cured, but we’re years from being able to say that and I’ll just be beside myself with happiness if I find out I have no detectable disease in 2 weeks time.

https://jitc.biomedcentral.com/articles/10.1186/s40425-019-0686-x

It’s my hope that my participation in this trial helps expedite this CAR-T’s FDA and MSAC approval for other CLL patients. It’s always better to be the 200th patient than in the first 20 but, hopefully I might just get lucky. I certainly won’t take it for granted and last week really scared me. I’ve likened it to the trauma of labour – you do forget (until you get pregnant again!) and it all happened to quickly and it was out of my control. I still have bone pain but it seems to be remitting and I’m not having to take so much paracetamol – it does impact my mood somewhat but being at home this weekend with the kids will help with that.

Day +16 – Wednesday

So skipped writing yesterday as spent about 20 hours of the 24 hours sleeping – could not stay awake to save my life. I think the previous 6 days had caught up with me. Have felt so much better today, not back to normal but I’ve been able to stay awake and even got stuck into some admin chores, I couldn’t even face doing the cognition tests yesterday. So I’m feeling brighter and have done my hair and makeup for the first time in days too.

My partner Nicholas is crossing the days off the calendar – day 16 is past the half way point for issues to happen – I’m told the first 28 days are the most dangerous for CRS and neurotoxicity and I’m hoping I’m through the worst of that.

I do have weird aches and pains. The lymph nodes under my left armpit, which is where the lymphoma part of my disease always seems to take off, are very sore today, and I’ve got joint pain in my shoulders, elbows and hips. Yesterday I also had a headache and pain down the left side of my face, jaw and neck – again this is where I’ve had problems with lymph nodes filled with cancer in the past so I’m hoping it’s the CAR-T doing it’s thing on my disease.

Who knows what tomorrow will bring? I’m back in the Peter Mac for bloods, an ECG and a check up with Carly, my trials nurse (she’s photoshy but I’m working on her!). Hopefully I’ll get more results tomorrow.

Day +14 Monday

For the first time in 5 days my blood pressure returned to normal overnight and I awoke to all the doctors standing in my room having fallen asleep after my 0630 obs. I was slightly mortified as it was the only day I was still in pyjamas while they were doing their rounds and I really wanted to be dressed for them. But I’m tired, very very tired and boy did I need that extra sleep. I’ve spent more time in hospital during this stay than in my original admission two weeks ago.

Dr Andrew Roberts, Mr Venetoclax himself, who I’m on the Blood Cancer Taskforce with, was the consultant on duty with Dr Lew doing the examination. They discussed my CRS – all the cultures for infection had come back negative and they’re sure that CRS grade 1 is what it was. I asked for a copy of my latest bloods and again saw that my lymphocytes have risen higher than they have been in 5 years from the nadir point of 0.6 on T-Cell infusion day to 3.8 on Friday and Sunday.

As Dr Anderson said there’s reason to be optimistic that this is due to the expansion of the T-cells themselves which ties in with the CRS symptoms and I dug out this paper which is very exciting…if it is the T-cells then this bodes very well for me reaching CR in a retrospective study (albeit a small one and a different CAR-T) which was published at ASH 2019. Would more than make that nightmare 36 hours worthwhile if that ends up being the case but it’s still early days and I mustn’t get ahead of myself. All part of the rollercoaster.

https://ashpublications.org/blood/article/134/Supplement_1/4106/424384/Peak-Lymphocyte-Count-after-CAR-T-Infusion-Is-a

I had yet another ECG – again normal and did the trials bloods. Con Tam came to visit me and I was good to go. Headed down to see my children and did more walking around just seeing them at home than I’d done in the past 5 days in total. It also perked me up. My neutrophils are the lowest I think they’ve ever been at 0.8 so have to be very careful not to come into contact with any bugs – it will be a real concern for me when they go back to school but I think they need to so will have to cross that bridge when we get to it in the next couple of weeks. As my eldest son Cameron would say – ‘that’s a problem for future Deb’.

For those considering CAR-T I also came across this pamphlet that Lymphoma Australia has put together.

Back with Nicholas tonight, everything in the normal range – no sign of neurotoxicity and I’m hoping that the CRS might be the only thing that happens and it’s all about recovering and then seeing if I’m in remission from here. Bone Marrow Biopsy, two weeks today and results a couple of days later. Looking forward to a very long rest tonight – it’s 6 days since I’ve had uninterrupted sleep and I’m really feeling it (and you can probably tell by my writing!).

Day +13 – Sunday

Feeling a bit down today – missing the kids and being at home and I’m feeling lethargic for the first time – was much brighter yesterday. I did a very short walk around the ward and found it a bit scary as was wobbly. All part of the roller coaster I was expecting and I think I’m still recovering from the shock of how quickly things went south the other night. For those interested I found a couple of papers on the intricacies of dealing with CRS in the clinical setting

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4929924/

http://hospitalhealthcare.com/latest-issue-2018/car-t-cell-therapy-managing-side-effects/

Dr Mary Ann Anderson came in especially to see me this morning – on a Sunday! She told me my neutrophils have fallen to 0.9 which is what they would expect at this stage and that my lymphocytes have risen to above 3 which is the first time they’ve been that high since I started venetoclax back in 2015. Lymphocytes are normally what they track to see cancer progression and I asked if it means the CAR-T is doing what ibrutinib does which is flushing them out of my bone marrow and lymph nodes into my blood stream and she said no her theory is that the rise is caused by the reengineered T-cell expansion itself but they just don’t know. We will know more about what’s going on 2 weeks tomorrow when I have my bone marrow biopsy to look for both the t-cells and any remnants of cancer.

In the meantime if my blood pressure stops falling I will be able to go home tomorrow but it’s more a you can rest at home because we trust you to come back quickly if you deteriorate than me actually being well. And Aideen pointed out she wasn’t expecting me to walk the Tan last time they let me out! Hello to her family in Ireland too who are following my blog while I remember.

Victoria has just shown me the bloods which Mary Ann discussed with me today. Here they are:

I had to get the canula removed from my elbow crease that emergency put in on Thursday night last night and it was almost a relief even being repricked because I hadn’t been able to bend my right arm for 3 days. But there are good sticks and bad sticks and you really learn to appreciate those who can canulate well. (I’ll try to keep this image small for the squeamish). Here’s what happened when someone missed the vein. And I have quite a few of that kind of thing that my poor arms have been subjected to over the past few days. I can see why I hear some cancer patients telling me how much they love their ports.

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All part of the experience but you really appreciate the good sticks like Lia did for me last night. Lia is from the Philippines and has been working here for 3 years. She nailed it. She explained to me that in her home country patients have to pay extra for PICC lines and ports and most can’t afford it so they have to canulate patients with poor veins all the time. I’m enjoying learning about where they all come from. Wish I had been doing a featured nurse of the day from the start of this! I didn’t know that overseas nurses have to do a 3 month course and pay $16,000 to get their licence to practice in Victoria either regardless of how long they’ve practiced overseas.

Despite the massive differences in their cultural backgrounds there is definitely a strong cohesive Peter Mac culture here – I don’t know if it’s a combination of the building and management but I can’t imagine anywhere in the world doing it better so I’ll try to stop feeling down and enjoy it for hopefully the last night on 5A.