Comedian and author David Downs was given an 80 percent chance of recovery after he was diagnosed with blood cancer, Non-Hodgkin’s lymphoma.
After 40 weeks and many rounds of chemotherapy later, his chances were much smaller – the cancer remained and he was given just six months to live.
His only hope was a trial treatment called CAR-T cell therapy, in Boston, United States, which says was “a breeze” in comparison to chemotherapy.
He’s now in remission and says he took cancer seriously, but did not choose to be solemn about it and built up resilience while writing a weekly blog - now turned into a book called A Mild Touch of the Cancer.
All the proceeds of which will go to help in cancer research, he says. Downs is now instrumental in assisting Wellington's Malaghan Institute to begin trials of CAR-T cell therapy in New Zealand.
Through thick and thin, Downs kept his spirits high and tried to be optimistic.
“You do lose all your hair, that’s quite hilarious because it happens quickly. Basically, everything just drops off you. Oh my word. It's like confetti falling. I've never seen anything like it, I was able to do a party trick for a couple of days and just sort of grab a tuft of my hair and pull it out and show people.
“I do have a serious piece of advice for anyone who [is undergoing chemotherapy] that you should wear underpants, and definitely not boxer shorts because boxer shorts won't contain [all the falling hair] … and you can leave little gingerbread trails behind you if you're not careful.”
His diagnosis came after he finally heeded his wife’s calls to go to the doctor when he seemed to be unwell for a couple of weeks and lost weight.
“I kept thinking to just tough it out, tough it out. I guess that's a key message for me is you do know when your body's not right and you do need to pay attention to the signals.
“That's why the book is called A Mild Touch of the Cancer because at the very beginning, I just felt like I had a mild touch of the flu.
“At the time, my new year's resolution was to lose weight and see more of my friends and family. I thought, well, it's just amazes me the power of myself, the power of my self-belief has just melted away the fat on my body.
“They did an abdominal scan and found a tumor, about 20 centimeters cubed and like a small basketball, and I'd obviously had cancer for maybe a year or maybe more … I didn't actually notice it like a hard lump. Like you might, if you had something like a breast cancer, it was more insidious, and more kind of tentacled throughout it.”
The doctor told him he had to head to the hospital the next day to start chemotherapy.
“It was a really tumultuous time, but at the same time, I thought at that time that I had an 80 percent chance of beating the cancer. So I was seeing it as a big adventure.”
But then they realised the chemotherapy wasn’t effective because of mutations in his DNA.
“I received the bad news sort of two weeks after I started my chemo ‘Oh, you're one of those people, you're one of what we call a double hit lymphoma’. And the odds of us now being able to beat this with chemotherapy have now plummeted.
“They had to try a more difficult, more pernicious, nastier one. And I had to be in hospital for five days at a time on a drip constantly receiving the drugs.”
Then he became very toxic because of the chemotherapy, but he still tried to look on the bright side.
“I was always curious about what was going on. They told me that for example, that you know, my fluids were toxic. I should be very careful when I go to the toilet that I had to flush twice.
“The doctors and nurses would come into my room and put on all these gowns and masks and gloves on. … and if anything dropped on the floor, they had to clean the entire room, and then they would shove those very drugs straight into my body. So I was going 'oh, this is an unusual situation'.
“My favourite thing was if a mosquito bit me, they would die and I was going, yes! Finally, I've got some revenge on those little summer creatures that ruin the barbecues!”
Along with enduring all the procedures, he says people began to give him some rather peculiar advice.
“Honestly a tincture made up of vodka and cayenne pepper … Well, I tried something very similar on my 21st birthday and I'm not going to make that mistake twice.
“I didn't ever belittle people because people are giving it with their genuine heart, but some of them were quite ridiculous, someone was swearing black and blue that I should stop doing chemotherapy and just eat nuts and oranges and I said ‘so okay, so the entire human history of medicine hasn't noticed that nuts and oranges would beat cancer? that's unusual for me to believe’.”
Despite doctors trying different “concoctions”, the cancer either appeared elsewhere or started to come back again.
“Doctors are always trying to find what is the right thing for you in your scenario. So the roller coaster keeps going up and down … you feel like you're really in this out-of-control state, and that's probably one of the most insidious things for patients or for people with long-term illnesses. They don't feel like they've personally got any actual control over what's going on.”
He says he didn’t give up and had a desire to keep wanting to do something
“Catherine [Downs’ wife] one night rang me when she knew I was at a low point and gave me sort of a challenge which was just fix something for one of the kids on this computer, and it made me realise later that that's such a powerful thing - allowing people who are going through an illness to have a sense of self identity and control is really important.
“The words you use to describe people actually can create the mistake of being so if you say someone is sick and suffering, infirm, and frail, they'll actually start to adopt those attributes.
“I prefer battle with cancer then suffer from cancer, for that exact reason that I just mentioned, because if you suffer from cancer, you're a victim. If you battle with cancer, you're in control. You're the player here.”
He says he had to go through “scan-xiety” – the anxious wait for results of screening, which ultimately showed he still had cancer. Then doctors gave him the news that he should probably start getting his affairs in order, because they thought he would only have six months to live.
“… which was difficult because I hadn’t had any affairs, and one of the effects of chemotherapy was that I was not going to be able to have any affairs,” Downs jokes. “So it was a really tricky time. Definitely, it was quite confronting, I have to say.”
Through the “rollercoaster ride” and hardships, he was able to find his saviour in the most unusual and unexpected way. He wrote a blog every week about what he was going through and what he found funny or interesting – his posts were shared widely and he received lots of love and support – and that’s where he came across the CAR-T cell treatment trial in the United States.
“Ultimately, that's what saved my life is the fact that I was writing this blog and it was being shared internationally.
“There are so many circumstances that you face that had it not been for XYZ, that something would be different. There was incredible luck getting on the clinical trial but also incredible luck that I had an amazing set of friends and family and the people that who were listening and watching and reading my blogs were supportive.”
The trial treatment Downs underwent involves taking blood from the patient and modifying the “T cell” from white blood cells in a specialised laboratory and adding a new gene before reinserting it into the blood system.
Malaghan Institute's clinical director Rob Weinkove, who is trying along with Downs’ efforts to bring the treatment to New Zealand, says CAR-T cell therapy is essentially genetic modification.
“This is not a GMO like a seed or a crop or an embryo. We're not talking about creating a self-sustaining organism, we're talking about creating a modification in a cell that cannot proliferate, it can't survive outside of the particular patient its designated for.”
Downs jokes he thought he’d need a license to re-import himself back to New Zealand after being “modified”.
“They laughed at me actually. They said don't be silly, you’re a human being and I said well how come a cabbage needs one but a human being doesn't? But apparently that's the case. I also don't glow in the dark in case anyone's wondering.”
Although Downs had to spend what he calls “an eye-watering” amount of money on treatment and travel - but still a relief from the price he was originally told - partially from his savings but also thanks to generous donations as well as efforts from his friends at a benefit show they held.
“It sounded very exotic, it was definitely not on the table or not a possibility in New Zealand. And it was very weird to think that I had to go to the other side of the world and at that point, pay what I thought was gonna be about a million US dollars. Not that I had that. So there was a lot going against it.
“I know others in New Zealand, for whom that would be absolutely out of reach and who have literally died because they couldn't afford to get on a trial like this. And that's why we you know, we're passionate about bringing this treatment to New Zealand.
“But actually the treatment itself, it takes a few weeks … they take out some blood, which takes a few hours and then that goes off to a lab and you have to wait around for three or four weeks while they manufacture these T cells.
“And then when they put the infusion back in it’s a five-minute job, like it's incredible. A tiny little vial about 2.5ml, about a teaspoon. It gets put back in over a better five-minute period. And that's it. That's the entire treatment.”
While his side effects were minimal – a mild flu – and the results were the best possible outcome with his cancer going into remission, Dr Weinkove cautions against all cancer patients thinking this treatment will also work for them.
“We're still learning about how to use this new type of treatment and there are trials now looking at bringing it earlier in the play, I would say that the thing about chemotherapy is that it’s been around for a long time and it does actually work really well for a lot of lymphomas and blood cancers.
“Many people will be cured by chemotherapy alone … but unfortunately, it doesn't always work for everyone.
“Some people have a very good response to [the CAR-T cell treatment] and are very few toxicities but, as David will be aware, some people do suffer severe toxicities and we’re only just learning what the risk factors for that are and how we can manage those and how we can help to prevent them.
“In fact, you do have to give a little bit of chemotherapy to weaken the patient's immune system before you give the CAR-T cells back so that the CAR-T cells can expand into large numbers inside the patients without being rejected.”
The difference with the trial in the US and what is happening at the Institute is that this one involves a “third generation” CAR-T cell therapy – which has an extra booster inside that will aid the immune response against cancer just a bit more.
“Now obviously, we don't know whether that's going to work to make it more effective. And we don't know what effect that will have on safety. So we're cautious about this trial, and our first trial will be a safety trial. And we'll be starting at quite cautious low doses.”
While Dr Weinkove is hopeful that it’ll be here and available for patients in the near future, there’s still many barriers it may face – one being legislation.
"We've been working on this project for around two-and-a-half years now. And we're at the stage where we've been making CAR-T cells from healthy volunteers and we've been gaining regulatory approvals that we need to be able to run a clinical trial of a type of CAR-T cell therapy here.
"So this is the first trial of its type in New Zealand and at this point, we've discovered that the you know, it's difficult for the regulators to get their heads around this treatment. And in some cases, our legislation doesn't quite take account of it.
"So some of the things are a little bit outside our control at the moment, but we're hoping to get started in the next couple of months."
He says when the trial is ready to go, the appropriate clinicians will know and they’ll pass on the information to the appropriate candidates.