I was hoping my next blog post would be a bit more positive. In fact, I wasn’t even going to write this but I’ve now had some time to come to terms with things, so here’s where I am.

Life continues to lay dog turds in my path.

Things were going well. I was 160 days post transplant and had managed to avoid graft vs host disease or pick up any infections that would require re-admittance to hospital. I was getting out regularly and my fitness was gradually improving. I was even starting to think about when I could return to some kind of work.

As part of my fitness recovery and our re-introduction to the UK after 17 years in Australia, we had been getting out visiting local towns and cities. In the middle of July we went to Lincoln for the day. I was pleased to discover that unlike a lot of places we’ve visited recently (a discussion for another day), Lincoln remains a lovely city to visit.

I was wondering whether I had recovered enough to tackle Steep Hill - the very steep street that takes you from the river up to the Castle and Cathedral. Well, I managed it. I was knackered by the end of the afternoon but I felt a sense of achievement (probably sounds strange to hear me celebrating managing to walk up Steep Hill - I’m 49 not 89!).

Usually after a day’s exertion it takes me a couple of days to recover. This time, we were 4 days later and I was still feeling it. My whole body was aching and I was getting various pains. I knew something wasn’t right but just thought it was part of the ups and downs of post-transplant recovery.

I had also developed a lump on my face above my top lip. It was a hard lump. It didn’t hurt, wasn’t red or weeping. I didn’t think it was enough to warrant another trip back to Sheffield Hospital. I did ring my GP however, who, over the phone, reckoned it was probably just a cyst and I should bring it up at my next visit to Haemotology, which would be the following Tuesday.

The following Tuesday came and I had had the usual blood tests before my clinic with a consultant from the Haemotology team. As soon as I went in for the clinic the doctor was looking at my blood test results and said “I think we’re in trouble”.

He explained that my white cells had rocketed up and it looks very much like my form of Leukaemia was back. I would need a bone marrow biopsy to confirm but in the meantime I would have to be admitted immediately as there’s no time to mess around with this type of thing.

I couldn’t believe it. I knew something wasn’t right but I never for a second thought I had relapsed. Both Rach and I were in shock.

The doctor explained that it was actually quite rare to relapse so soon after transplant. Lucky me. He also reminded me that my form of Leukaemia (ALL with Philadelphia B positive) doesn’t have a good prognosis. A reality check.

I was admitted and the next day I had a bone marrow biopsy. They also arranged a biopsy of the lump on my lip. Both confirmed that it was Leukaemia.

Bone Marrow Biopsy

The bone marrow biopsy was horrendous - the worst one yet. They came into my room to do the procedure. Unlike in Australia where it was done under general anaesthetic, this was under local anaesthetic, and even though the doctor had requested it, there was no gas and air.

I’m glad Rach was in the room to see how horrendous it was. The extraction of the bone marrow from the hip and spine is bad enough but the worst bit is when they have to drill into the bone to take a sample of the actual bone. There’s not enough local anaesthetic in the world to dull that pain. The procedure also seemed to last twice as long as the last one in May. The one I had in May was using gas and air, and I think it was the first time that I actually thought gas and air worked. It may have just been the placebo affect but I had somehow mastered it. I think I wasn’t taking deep enough inhales before. It was a long time since I’d felt this drunk and I was quite enjoying the experience! No such luck this time, I just had to grin and bear it.

With Leukaemia confirmed, the Haemotology team assessed the next steps. They don’t like to arrange another transplant within 12 months, and anyway, the last one had failed, so they needed to look at other options. They explained to me that If this had happened a few years ago I would have been shit out of luck (not quite in those words). Luckily, there’s now the option of CAR-T therapy.

CAR-T Therapy

Although fairly new as a treatment option, they had been seeing good results from chimeric antigen receptor - T cells (CAR-T) therapy. This is a type of immunotherapy where the T-Cells (blood cells that protect you from infection and disease) are extracted from the patient and genetically modified in a lab to find and kill cancer cells, before infusion back into the blood. In some cases, CAR-T has proved successful when all other treatments have failed.

In the UK. Leukaemia patients under 25 have been approved for CAR-T therapy. For those over 25, there’s a national panel who gets to decide whether the treatment can go ahead. My doctor thought I would be a suitable candidate.

They quickly got me on the next panel for assessment and thankfully, I was approved.

I spent two weeks in hospital getting the Leukaemia under control using a combination of steroids, as well as oral and IV chemo. Once my white cells were back down to reasonable levels and other side-effects were under control, I was discharged. I came back on Thursday 8th August as a day patient for the CAR-T extraction (harvesting). Once extracted, the T-cells are sent off to a lab in Amsterdam and it is typically 4 weeks before they are returned for infusion. In the meantime, I’m taking daily oral chemo to try and stop the Leukaemia from spreading.

The CAR-T extraction involved spending 5 hours on a machine called a Blood Cell Separator. A large line is inserted into one arm, the blood goes into the machine where it does its magic before being inserted back into my other arm. Since being admitted to hospital I’ve also had another PICC line inserted to take blood and administer IV treatments but they can’t use the PICC line for this.

After the extraction was complete. I then needed a blood transfusion. My haemoglobin levels that day were at dangerously low levels. No wonder I felt like I’d been hit by a bus. I would need two bags of blood - both a 2.5 hr infusion. I was a long day.

Pain

I’m now waiting for the T-cells to come back from Amsterdam. In the meantime, my days involve trying to keep on top of the pain and dealing with all the side effects of the meds they have me on. The main symptom of Leukaemia for me has been bone pain. I’m taking pain relief every 4 hours but it’s at night when it’s the worst. I seem to be waking up at 1am every morning needing the toilet to find I’m in agony. The pain goes from my back around in to my chest and is that intense that my body seizes up. I have to get Rach to help me out of bed.

The palliative care team saw me yesterday to talk about the pain and they’ve modified what I’m on. Let’s see if it works. I can’t say I’m having much fun at the moment.

A lot of the meds that I’m on make you drowsy. So just staying awake is a constant battle. If I keep busy I seem to be ok, but as soon as I stop and take a break, I’m struggling to keep my eyes open.

The other problem is that those two weeks in hospital dramatically set back my fitness levels. It’s as if the last few months were for nothing. I did a short 1 mile walk last week around a local lake and I thought I was going to have a heart attack at the end of it!

The doctor explained to me that, just like the stem cell transplant, I need to be in the best state of fitness to give the CAR-T a chance of success. The thing is, the pain at the moment means it’s killing me just to get up stairs to my bedroom, never mind anything else.

The amount of oxy-codeine I’m taking has also bunged me up again. Welcome back, constipation. It really is deja vu.

Next Steps

So that’s where I am. It’s now over a year since I was first diagnosed and things have basically gone back to January. We’re hoping the CAR-T is successful. I haven’t yet had the guts to ask what happens if it’s not a success.

Before I go back in for CAR-T infusion I will need another bone marrow test, as well as a lumber puncture to deliver chemotherapy to protect the spine and brain. I’m also having other various tests (ECG, lung function, etc), and I need 3 days of conditioning chemotherapy. Luckily this can be administered as a day patient.

As with the stem cell transplant, even if the CAR-T is a success there are still associated risks. The biggest and most likely risk is something called Cytokine release syndrome. The CAR-T stimulates the immune system to make large amounts of cytokines. This can result in symptoms such as fever, difficulty breathing, headaches, etc, and in the worst case may be require admittance to the Intensive Care Unit (ICU). There’s also a risk of neurological side effects, such as confusion, difficulty speaking etc. Usually these systems respond to steroids.

I will spend a minimum of 10 days as an in-patient following the CAR-T infusion (it was 5 weeks for the stem cell transplant), after which It will be months of monitoring and recovery. Similar to the stem cell transplant, my immune system will be depressed so I’ll be at heightened risk of infections. Here we go again.