In March 2022, member of the Blood Cancer Taskforce and Cancer Australia’s Advisory Council Deborah Henderson found out she had COVID-19. Here, she shares her first-person narrative of that experience.

Deborah was diagnosed with CLL in December 2011 and has had five lines of treatment including two Phase I clinical trials. More on her back story can be found at www.abtandme.com and previous CLL News updates.

‘Your Covid-19 PRC on the swab collection on the 06/03/22 is POSITIVE.  Please isolate immediately’ – by far the worst text I’ve received for some time, and something I had been dreading ever since I’d decided to stop shielding and return to the world in as COVID-safe a manner as possible.

Suffering a scratchy throat the night before, I’d headed straight for my PCR first thing the next morning. It was now 8pm Sunday night and the diagnosis was confirmed despite two Rapid Antigen Tests (RATs) saying otherwise.

I sent an email straight off to my haematologist Constantine (Con) Tam at the Peter Mac [Peter MacCallum Cancer Centre] here in Melbourne. The worrying thing is, I’m not only at high risk of hospitalisation with COVID because I’ve had CLL for a decade, but I’m also only 18 months out from having my immune system genetically modified by CAR-T therapy and had no measurable antibody response to four COVID vaccines. I received two primary doses of both Pfizer (in June) and then Astra Zeneca (in November) and was due to have my Moderna booster at the end of March. Con, to his credit, came straight back to me, copying his assistant Ash and saying I needed to be referred to Monash first thing Monday morning (day 2) for an immediate infusion of the monoclonal antibody, sotrovimab.

A worrying night ensued, I started deteriorating rapidly; sore throat, heavy chest and I could feel it affecting my breathing. I didn’t have a fever but had chills, shakes and felt shocking. By the morning, I was getting chest pain and, as the nurse at Monash triaged me on the phone, I told her about it and she made me hang up and dial triple zero; something I haven’t had to do since getting pneumonia 10 years ago. I did feel terrible calling an ambulance, but the paramedics said I’d done the right thing. They were there within eight minutes and reassured me and checked that my sats (oxygen saturation) were all ok – mobile ECG and defibrillator on hand. I was very grateful.

My partner, Nicholas, was allowed to take me to Monash and it was an efficient booking process in their satellite clinic across from the hospital. I’ve had two monoclonal antibodies before – rituximab (the R in the chemo regimen FCR) and obinutuzumab, which I had in combination with venetoclax back in 2015. The potential side effects with sotrovimab were similar to those; anaphylactic reactions, temperature deregulation, and I was told it might make me feel worse before I felt better.  I was a little anxious but, at $2,000 per infusion, and with such limited supply in Australia available, I don’t think I’ve ever been more grateful to have a drug put into me. It’s been proven to reduce hospitalisation and death with COVID by 85% with the Delta variant, and studies are ongoing to see if it is having a similar impact with Omicron. It has to be given within five days of contracting the virus for it to work.

They’re pretty sure I’d caught a decent dose of Omicron and perhaps even the more highly infectious BA2 variant. I believe I caught it from a GP I’d seen three days earlier as my children still haven’t had it despite being surrounded by it at school. They’re now 17, 15, and 12 and I decided that they had to return to school this year so our shielding days as a family were over.

The GP appointment was the only time I’d removed my mask in close contact with someone. I was having a skin check and towards the end of the check the GP told me her son was off school with COVID! You can imagine how unimpressed I was because she knew how vulnerable I am, and this wasn’t an urgent appointment! Suffice to say, I will not be returning to that clinic, and it just shows how, despite our best efforts to protect ourselves, you can’t control everything, so it’s best to have a COVID plan in place.

Two hours later I was heading home. The sotrovimab infusion only took half an hour and they monitored me for an hour afterwards. My chest was still heavy with a cold, and I’d started coughing. The chest pain had gone. My sinuses were full and I was feeling really low and miserable. I’d noticed this with my partner when he’d had Delta in December; it really does affect your mood too. I had a friend who had COVID when she was nine months pregnant (she and her baby were both fine). She sent me a list of everything she’d taken and done to get herself well, so I was grateful she’d done all the legwork for me. I had a pulse oximeter and a Vicks steam vaporiser along with a nasal spray I was using in a steamy shower.

On the Tuesday (day 3), I woke up feeling a bit better – sunshine, fluids, lots of vitamin C, D, and zinc – it was still on my chest a little but felt like it was lifting slightly, and I was definitely feeling more positive. I made myself a homemade chicken soup from scratch and even ate some raw garlic!  I posted on the Wednesday (day 4) on the Leukaemia Foundation’s CLL Facebook group that “I don’t want to tempt fate but I think I’ve got this!” Way to tempt fate. I had been put into the Alfred Hospital’s COVID pathway for high-risk patients but only heard from them for the first time on the Wednesday, so it was good that the Peter Mac and Monash had already been involved, as I think I would have been very sick if I hadn’t taken things into my own hands and had waited for them to get in touch, plus I would have missed the window for sotrovimab. Twice a day they’d send me a detailed survey via text to complete – did I feel better than yesterday? how was my breathing? – and they’d make me take my temperature and read the pulse oximeter I would put on my finger. A nurse would then follow up on the phone and then a doctor if required.

By the Friday (day 6), I felt like I was going backwards, it was returning to my chest and the Alfred doctor prescribed me two lots of antibiotics to take three times a day – amoxycillin and doxycycline.  Others have said the same, it comes at you in waves. He was worried about me getting post viral pneumonia and the antibiotics were dispensed from the hospital for my partner to collect. Again, I was very grateful for the prompt care. The antibiotics turned things around again, and by day 9 I was testing negative on the RATs (they’d only turned positive on day 3, by the way, so really aren’t reliable until you’re symptomatic, by which time it’s too late).

It only took 10 days from start to finish before I felt back to normal. My children now have the super cold, which mimics COVID but isn’t, and are sicker than I was. Having locked myself up for two years and been terrified of COVID, I’m so relieved I can relax a little. I caught my first flight at the weekend without sitting there terrified about being infected by the passengers beside me, and I feel like I have my freedom back. I now can’t have my booster until three months after the sotrovimab infusion, which takes me to the end of June, and winter.

I know COVID is still a potentially killer virus for us and we have to be vigilant, but I’m so much more confident that with good and prompt treatment, and the back-up of the vaccines, we can get through it, and I just wanted to share with you all in the hope that when you get that COVID-positive PCR result you won’t be as alarmed as I was two weeks ago.

If you are diagnosed with COVID-19, it is important to contact your treatment team/haematologist immediately, particularly if you live in a regional area, to ensure your treatment is coordinated and fast-tracked.