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Opinion: Being part of a trial for prostate cancer treatment has improved my life greatly

Peter MacNamara has been battling prostate cancer since 2011 and has found immunotherapy via a clinical trial to be hugely helpful.

Peter MacNamara

FOR MOST MEN of my generation, the idea of going to see a doctor to have your prostate checked out is not something you want to think about too much.

In my case, a rising PSA level (prostate-specific antigen test) – which can be a sign of prostate cancer – meant a visit to a cancer specialist. A biopsy confirmed my worst fears – that I had prostate cancer.

Following many torturous weeks of discussion with my partner and family, I took the advice of my specialist and checked in for what was called radical prostatectomy – surgery to remove the prostate gland. This was a fateful decision, and a very difficult one to come to.

Shock

Emotionally, the thought of the possible consequences of the procedure was an enormous challenge. Many opinions were offered, both medical and hearsay, and precise information was not easy to come by.

Knowing you have cancer and being aware of the consequences of not having it treated outweighed the risks and, although the decision was very hard, I eventually booked in for surgery in March 2012.

The operation was deemed to be a success. Follow-up tests were encouraging and I have since managed to live a reasonably normal life, albeit with restrictions caused by the removal of the prostate.

But, most unfortunately, my PSA count never reached zero and over time began to steadily increase. Various hormone treatments were tried but with little effect. I had a course of radiation too but even this had limited benefit and, by 2020, my oncologist notified me that the cancer was beginning to spread to the bones in my chest and thorax. There were also signs of lymph node infections in my upper chest.

Having coped with the initial and ongoing discomfort from the surgery and managing to enjoy a very active lifestyle, including my love of the outdoors, sailing and yacht racing, I was aghast at the thought of any treatment that might extend my life span at the expense of my quality of life.

Immunotherapy

So, in discussion with my oncologist, Professor Ray McDermott, a trial combining chemotherapy and immunotherapy being run at Tallaght University Hospital (TUH) was mentioned. If I was prepared to enter the trial, he would nominate me.

He explained that joining the trial would be in addition to a course of chemotherapy he was recommending and that it might complement it. The costs of the trial/chemo would be covered by the pharma company and this included all scans, blood tests, consultations, etc., so there was no question of health insurance/personal cost – or, to be clear, of being paid to take part.

The actual immunotherapy treatment is a new drug called Pembrolizumab, or Pembro for short, already used to treat other types of cancer. He explained that the way immunotherapy works is by recognising and targeting specific cancer cells and educating the immune system to remember what they look like. It also boosts the immune system.

Through a process known as immunosurveillance, the immune system learns to continuously detect cells growing abnormally and is able to attack them as they are identified. The immunotherapy treatment follows the path taken by the chemotherapy and zaps the same cells with an additional blast!

I was told that in my trial half of the recipients would receive the drug, while the other half would get a placebo. I decided to take the chance that I might be one of the lucky ones and began the treatment in conjunction with the chemotherapy in June of last year.

Initially there were no troubling issues but, as the months went by, I began to suffer from several unpleasant side effects. These included skin blotches, extreme tiredness, loss of taste and appetite, and tingling in my feet.

However, I persevered and managed eight chemotherapy sessions. By Christmas 2020 when the chemotherapy was stopped, the results were truly amazing. My PSA reading dropped from almost 200 to 23. The spots on my ribs and thorax stopped growing, and the lymph nodes started to shrink.

Armed with this result, and a belief that I might be on the actual Pembro drug, I decided to continue this part of the treatment.

The trial itself is really well run. The staff and doctors are extremely attentive. All possible tests are carried out on a tri-weekly basis and a full consultation is provided at each visit.

A dedicated nurse is assigned to each patient and follows the treatment closely. On top of this, having Professor McDermott available to answer questions and provide reassurance is especially welcome.

In addition to the regular injection of the immunotherapy, or placebo drug, I undergo bi-monthly bone and CT scans. These provide a clear analysis of my condition and show what stage any cancer cells are growing or receding.

To date the tests are showing the cells have either stopped growing, or are reducing in size, which is great news.

The trial is strictly run as a “blind”, i.e. neither the patient nor the medical staff is aware of what is being administered. Only in the case of an emergency will this be revealed. I understood this was a condition imposed by the pharma company.

To have these tests, along with my regular treatment, available all under one roof at TUH is a huge benefit and helps reduce the stress associated with hospital visits. It also reduces waiting time and makes for a more comfortable visit. The trial is run from a specialist, self-contained, oncology unit in the hospital, and this gives even more peace of mind and avoids the risks associated with contact with other hospital patients.

Staying positive

As with all medical treatment, the state of mind is of major importance. Prior to starting the trial, I was offered a detailed checklist of possible side effects together with a fully worked out schedule of medication.

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This even included a day-by-day schedule of drugs to take to combat the effects of chemotherapy or immunotherapy. Then during the trial counselling was provided at short notice if I was feeling down or had anxiety issues. I won’t pretend I didn’t have some call for these services at times but am happy to relate they provided exactly what was required when needed.

As I am far from being a medical expert, I knew very little about immunotherapy or clinical trials before my diagnosis, but the research in this area seems to be very exciting.

Based on my own experience, I would certainly recommend that patients ask their doctors about the potential for clinical trials in their treatment. Also, the ethos, attention to detail and practical support provided is top class. As a patient of a trial, I felt that every precaution was taken before and during the trial. Wishing good health to you and yours.

Peter MacNamara is a retired executive from Limerick city. He competes in many yacht races every year and runs the annual chamber music festival on Valentia Island in County Kerry. Marking International Clinical Trials Day, Cancer Trials Ireland will host a virtual Cancer Retreat on Friday, 21 May and is urging people diagnosed with cancer to “Just Ask” their oncologist or doctor if there is a cancer trial suitable for them. To register for the Cancer Retreat or to find out more about cancer trials or the “Just Ask” campaign, visit www.cancertrials.ie.

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Peter MacNamara

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