7 minute read
Treatment choices and decision making
At ANZUP’s recent Community Engagement Forum, Associate Professor David Pook and his patient Juliet De Nittis discussed Juliet’s cancer, and the trial she went on under the guidance and support of David.
Who is Juliet De Nittis? I am a success story. I would not be here today without the immunotherapy treatment I received from an ANZUP clinical trial.
“I firmly believe a clinical trial saved my life” Juliet says.
There is no good day to hear
‘you have cancer.’ But for
Juliet it was the worst possible timing. On the eve of her daughter’s 16th birthday, she was diagnosed with kidney cancer.
Juliet put on a brave face to avoid upsetting her daughter, her heart was silently breaking. Doctors only gave her a year or two to live, at the most. As more results came back, that was reduced to just 8 months. “It was a shock,” Juliet says. “I wanted to live.”
While Juliet had stomach and back pain, for many, kidney cancer has no symptoms at all. And the disease is increasingly common.
Juliet’s type of kidney cancer was aggressive and considered untreatable. It covered her whole kidney and had already spread to her lungs.
The opportunity to be on the ANZUP’s UNISoN trial gave her some hope to cling to. For the trial, Juliet took an immunotherapy drug, nivolumab, which primed her immune system to recognise and destroy her cancer cells.
‘Now, incredibly, after 2 years of immunotherapy treatment and another year of treatment free, my cancer is still in remission, stable and the latest scan unbelievably revealed: “Lungs Clear!!”; my expiry date has expired!’
About David
Associate Professor David Pook specialises in the treatment of prostate, kidney, bladder, and testicular cancers. He is the principal investigator on multiple international clinical trials treating urological cancers with experimental drugs including novel combinations of immune therapy.
He is a clinical research fellow in the Prostate Cancer Research Group at Monash University where he helps develop prostate cancer models which can be used to test novel treatments. He is also the Deputy Chair of the Kidney Cancer Subcommittee of the Australia and New Zealand Urological and Prostate Cancer Trials Group.
Q: What treatment plan did you put in plan did you put in place for Juliet?
DP: Juliet was an easy one, but not for a good reason, as she had non-clear cell kidney cancer. The standard treatment was palliative care, which was not an option. The ANZUP UNISoN clinical trial had opened for nonclear cell rare cancer, so we offered this to Juliet.
Q: Juliet, when you were given this information, what went through your mind when David was explaining it all?
JDN: I think like anyone would, if you have a chance, if there is some hope you take it. That was the first thing I thought, and if it didn’t work for me, it may work for the next person.
DP: Juliet said that it might not work for you, but it might for the next patient. This is the reason a lot of us do medicine. Juliet came to the clinic, and she was scared and worried that her cancer has spread. Juliet was going through the worst time of her life, and she was still thinking about other people.
Q: What information did you look at when you were trying to decide what to do?
JDN: I did what most did. I went to google search, which can be incredibly depressing. I found asking David and the trials coordinators for information helped. I then read all the information and wrote down many questions to ask, so I felt prepared. I also felt part of the decision-making process.
Q: What has your experience of the trial been like?
JDN: I was placed on the UNISoN trial and given a new immune treatment to see if it helped me.
When I discussed my options with my specialist, David, he said because of the type of cancer I had, if we had nothing to treat me with, I would be dead.
The medical staff, all of them; doctors, study coordinators, and incredible, competent, endlessly patient, fabulous nurses and auxiliary staff at Monash Clayton Clinical Trials Centre are brilliant, kind, and professional – vitally important and have helped me and fellow patients through our trial experience.
I was completely surprised by the success I have had. You wish for it, but you cannot allow yourself to truly belief it!
Q: David, what are some of the clinical trials you are working on?
DP: I am the principal investigator for ANZUP on multiple international clinical trials treating urological cancers (including kidney cancer) with new drugs and combinations of immunotherapy.
Symptoms of kidney cancer are blood in the urine, a pain or dull ache in the side of the lower back that is not due to an injury, a lump in the abdomen, rapid, unexplained weight loss, constant tiredness, and fever not caused by a cold or flu. But many people with kidney cancer have no symptoms. Many are diagnosed with the disease when they see a doctor for a different reason.
Juliet has a type of kidney cancer called non-clearcell kidney cancer. In Australia there are no treatment options for this type of cancer funded by the PBS.
Juliet agreed to take part in an ANZUP trial evaluating the immunotherapy drug, nivolumab. In doing this, she is helping future patients who develop this disease, by allowing us to assess how well this drug works in this situation. Currently, I am testing another drug called cabozantinib in non-clear-cell kidney cancers like Juliet’s which are no longer responding to immunotherapy.
I am also involved in testing immunotherapy as a preventer of cancer returning after surgery. This is exciting as a recent trial has shown that this is effective. It is a positive time with kidney cancer treatment now at a transition point.
For a while, treatment options for kidney cancer included surgery alone. We now have more to offer as a standalone treatment or in combination. Targeted therapies are now being used and target specific molecules in cells to block cell growth.
We are also aware of the role immunotherapy plays in cancer treatment and are excited to be part of clinical trials of immunotherapy in kidney cancer.
Immunotherapy works to enhance the immune system of your body… to take ‘the handbrake’ off the immune system by blocking so-called checkpoints. This allows the immune system to attack kidney cancer and for the first time we have seen kidney cancer disappear in some patients.
We are eager to explore how immunotherapy can be integrated with existing therapies and current treatment combinations.
Current trials will allow us to understand how this form of treatment will benefit patients with kidney cancer – both the rare and common forms of the disease.
All the research being undertaken suggests we will witness a rapid increase in the number of available kidney cancer treatments soon leading to some people having incredibly positive outcomes from their kidney cancer treatment.
At the same time, it is likely that more targeted immunotherapy treatments that are now being tested in other cancers will be modified for use in kidney cancer and enter clinical trials – further improving outcomes in the years to come.
Q: What advice would you give other people in a similar situation?
DP: If anyone is thinking about participating in a clinical trial, you should ask your clinician any of your concerns, questions, and queries. It is also important to get a good picture of what the standard treatments options are, and to ask your clinician if there are any clinical trials suitable for you.
JDN: First, I would ask the question ‘is there a trial suitable for me?’ I felt extremely lucky to be eligible for a trial, as it was an incredible opportunity to have the best outcome you can have.
I joined the trial not just with the hope the treatment may help me in some way but also to contribute to research for future cancer patients, and with enormous gratitude for previous cancer patients who have participated in trials that have led to my current treatment.
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