Heleen Feldmann – The trial of my life

Heleen Feldmann shares her current experience of being on a drug trial for advanced melanoma cancer.

You can listen to this article below, or by using your favourite podcast player at pod.link/oncologybuddies

Heleen Feldmann (44) lives in Johannesburg, Gauteng with her husband and three adult children. 

As a child, I always thought people in their forties were so old then I reached my forties. Little did I know my current age would be a life-saver. 

Melanoma diagnosis

In 2024, I discovered a mole on my back as my gym clothes would scratch it. By October, it was just a bother, and I made an appointment at a dermatologist. Keeping in mind I don’t have many moles on my body. After so many follow-up calls, I forced the dermatologist to tell me on the phone; it was malignant.  

By November I was booked for surgery to remove it. The surgeon did a scan before the operation; it had moved to my lymph node under my arm. A surgery that was meant to be a mole extraction turned into five operation cuts and extractions. All the extractions were sent away and came back positive. At this time, it was Stage 3 melanoma cancer. 

Lung surgery

I met with a medical oncologist who ordered a PET scan; the melanoma spread to my right lung. In December, a cardiothoracic surgeon removed the cancer from my lung. It was now Stage 4 metastatic melanoma cancer.  

I got this mode

I was shocked but went into I-got-this mode, telling close family and friends and making plans to pay for treatment as my entry level medical plan wasn’t going to suffice. It barely covered the operations that followed in such quick succession. 

Clinical drug trial

The medical oncologist saved the day again and set up an appointment with another oncologist who was involved in a drug trial. This was a lifeline and I was approved onto the trial. For the first time, my age was a benefit – being 44 (deemed young now) with no underlying or other medical conditions, it was a green light. 

This trial is at no cost to me as it covers all treatment and scans. It was explained that it’s a Phase 3 blind trial – there is a chance that I would receive either a new drug or another drug that is already approved in 

SA. All this means is that I’m getting immunotherapy. These treatments are once every 21 days, the base is it boosts my own immune system to fight the cancer in my body. Thus far I’ve had two treatments and the side effects are most confusing. Everyone tells you immunotherapy side effects are minimum; I beg to differ.

Between the constant headaches, muscle pain, and nausea, there is just enough energy left to balance your personal and work life and will to get out of bed. Plus, small little bumps that appear all over your skin, yet these are all bearable.

The pros and cons

This trial lasts for a year and then five years of follow-up appointments. The part that makes me uneasy is that I can’t take any additional supplements or medications as it will interfere with the result of the drug. This concerns me as there are many supplements and medications that people use to assist in recovery or recurrence that could hamper the qualification to the trial. The moment you aren’t adhering, you’re off the trial. I was warned about this when I took antibiotics for an infection on a surgery wound that wouldn’t heal. 

Also, if cancer is found anywhere in your body again, you’re immediately off the trial. No questions asked. With not too much certainty of what can be done after that.

Trials allows medication that is unaffordable or not always available to give me a second chance. However, the cancer isn’t mine, it belongs to the pharmaceutical company that is paying for me to be on the trial.

A rocky road

Sure, it’s a journey as it’s constantly referred to, but for me it’s a rocky road coming down Mount Everest and all I can do is hold on and not lose my mind. This is month four and I’m sure there will be more ups and downs. Still just taking it day by day. 

Cancer isn’t about the disease to me. It’s about the change and impact it’s having on me as a person. I will fight to beat the disease, but I’ll never be the same person after this. 

This is a post I shared on Facebook as it exactly describes how I feel:

“Let me tell you what cancer does. The disease I can handle, the treatments and side effects are manageable…but what they don’t tell you is that it annihilates your being. It robs you of your future plans, your belief in people but above all your belief in yourself. You become weak and vulnerable, all you have worked for gets taken from you as people think they are helping you, but they are not. Everything in life becomes about this disease. You can’t trust anyone as you don’t trust your own judgment. You get told the cancer is at a stage, but no mentions at what stage is your mental state. You actually just can’t take this anymore. So, yes fight the disease with all you have, but the rest of you’ll never be the same again. No, I’m not a pessimist, this is just the story of my cancer “journey”.