Chapter 21: What the floopedy doop is CAR-T therapy?!

I should definitely preface this blog by saying that I’m currently on extremely strong painkillers (they’re a controlled substance 😂!) and so there’s a big chance that some of this might not make much sense. To say that the painkillers make me drowsy is the understatement of the year! 😵 I will try my best to be coherent.

This week has been busy, busy, as usual. Never a dull day in my life. Monday was the first appointment in London at the UCLH Macmillan Cancer Centre, which is the day unit for UCLH. It was another world compared to my small-town local hospital; a six-floored, friendly giant that welcomed me in with open arms as if I had been going there all along.

We met with one of the haem team (love saying that 🤣), a lovely consultant called Maeve O’Reilly with a beautifully lilting, Irish accent. She gave us all the information we could possibly need about the CAR-T therapy. Here is a link to a good article by Lymphoma Action that goes into a bit more detail, but I will give a brief overview of what the flippedy heck this CAR-T I keep talking about is.

Everybody creates T cells, which are one type of the body’s immune cells (lymphocytes). They help to fight infections. CAR-T therapy involves ‘harvesting’ my T cells (a slow, boring and painless process, similar to when I had my stem cells collected) and sending them off on their travels to the lab in California. This is where the magic starts. My cells will be genetically modified and given an extra receptor (a Chimeric Antigen Receptor – CAR), which allows them to recognise a protein on the lymphoma cells. They will then be reproduced until they have enough to treat my lymphoma. They arrive in Cali as T cells and they leave as magical new CAR-T cells. This whole process take six to eight weeks, after which they are sent back to the UK and I have them back as a transfusion, the ‘therapy’.

Credit Bloodwise

We left London with a schedule. I was to return Thursday this week (today as I write) for the cell harvest, but in classic Lucy style things have gone a bit tits up since then. Tuesday lunchtime I came in for my weekly blood test, and threw a fever while I was there 🙄 Luckily I knew I was not neutropenic; they’d done every blood test under the sun on Monday at UCLH in preparation for the upcoming treatment, and so while it wasn’t full panic stations, it was still mild panic stations. We don’t want to risk contaminated cells being collected if I do have a slight infection brewing somewhere. So lucky me I was admitted Tuesday night and started on IV antibiotics just in case.

Yesterday was a lot of backwards and forwards between my consultants here and the team over at UCLH, as to whether to postpone the harvest for Monday, just so we can give me IV antibiotics until then and are therefore more likely to have knocked any bugs on the head, and ultimately that’s what was decided. Disappointing for me really, even though I know it’s not worth the risk of contaminated cells, which would set us back a further two weeks or so which I cannot afford to wait.

We’re currently doing nothing to treat the lymphoma; we can’t until my cells have been harvested on Monday, we need my body in optimal condition, so it’s been allowed to grow unchecked over the past ten days since I tapered off the steroids, and subsequently my abdomen is so distended and tight; I could quite easily pass for four or five months pregnant. It is utter agony, and extremely unnerving to know that it has free reign of my body. Not for long though, pesky lymphoma. The minute the cell collection is complete on Monday they will be jamming a handful of steroids down my throat, and transferring me back to UHCW (where I had my first chemo regime – I have missed the staff on the ward so much and cannot wait to see them 😁!) so that I can have some chemo to try and bring things under control a bit over the six to eight weeks we wait for my cells to come back. I don’t quite know how, but there are still a small handful of chemo drugs that I haven’t had yet, we are hoping that it’ll be these that at least have some effect on the lymphoma. They have to be very careful with doses now for me though; I’ve had so much chemo and so many different drugs up to this point and the cumulative effect could be a slight worry in terms of future side effects, but as always I trust my team both here and in London with my life! (literally).

I think that’s everything for now really; someone get this girl some more oxycodone!

Me in ten minutes time…

Chapter 20: Well, shit.

So when things can’t get any worse, turns out they really can. How one person can have such colossally awful bad luck is beyond me, but here I am.

The weekend before last we decided to take a last-minute trip to Devon to take advantage of the unexpected February sunshine, which was lovely, but in typical fashion included 1/4 of my days in A&E at Torbay Hospital. They were nowhere near as concerned as my local hospital would have been, which was very strange, but each NHS trust operates by different guidelines and who am I to tell them how to do their job.

Whilst away I started to notice some pain in my lower abdomen again, a pain I knew only too well which niggled at the back of my mind and took over most of my daily thoughts. When you know you just know. We arrived back home from Devon at 1am Wednesday morning, and after about 3 hours sleep I awoke feeling pretty awful and with a fever of 38.1, so off we went again to my local A&E. They admitted me for antibiotics (standard procedure) and planned a CT scan for the following day.

Friday morning we received the news that I knew was coming. This second attempt at chemotherapy has not been working. One of the consultants described it as each dose of drugs temporarily shrinking the tumours (enough for it to look like a ‘good response’ on a CT scan, as shown 6 weeks ago) but then the cancer growing back larger than before between each dose; to the point now where it has increased considerably and spread to my liver (and other places I don’t particularly want or need to know about).

So the question is what now?

Tomorrow I have a meeting at the QE in Birmingham to discuss and find out more about the new CAR-T therapy that I am now eligible for, having failed two lines of chemotherapy. It’s clear at this point that chemo is not going to work, which is just as well because they are running out of drugs to try on me! Up to and including this point I have had a total of 12 different drugs, across 3 different regimes thrown at me, and after nearly 12 months of chemotherapy, my body is slow to recover now. So slow. But this new treatment isn’t chemotherapy, it’s immunotherapy, so there is still hope.

I will do another update later on this week once I have a bit more information and I know a bit more of what the plan is, right now I have to think about dragging my cancer-ridden arse off the sofa to get ready for a meal tonight with my cancer sistas!

Once again, please keep your ‘I’m sorry’s and your ‘sympathies’ to yourself; they don’t help anything, especially not me!