Clinical Trial Experience Interview: Hedva Gonen, Melanoma Cancer Survivor

We are interviewing members of our community about their experience participating in clinical trials. Your story could save lives. If you would like to be interviewed, please complete this quick questionnaire. 

Dr. Hedva Gonen is a biochemist working on the faculty of the Technion Israel Institute of Technology. She is also the CEO and founder of the Israeli Melanoma Association. Hedva is very willing to speak to other cancer patients about her trial experience. If you would like to speak to her directly please contact us here and we will be happy to put you in touch.

1. When were you first diagnosed with malignant melanoma?

I was first diagnosed with malignant melanoma in 2013.

2. Can you describe your cancer treatment journey?

 

In March 2013, I was diagnosed with metastatic melanoma stage 4 of Unknown Primary origin. In Israel, the melanoma oncologist recommended six cycles of combination therapy: chemotherapy and Interleukin 2 (IL2). At that time, May 2013, Dr. Wolchok and his colleagues published preliminary results of clinical study, in which patients with unresectable melanoma were treated with two immunotherapy drugs: Ipilimumab and Nivolumab. The results were promising. Digging in the clinical trials website showed that two groups were still recruiting, one of them at the MSKCC under Dr. Wolchok’s supervision. I addressed Dr. Wolchok and was invited by him for consultation. It happened to be that I fit the study. In July 2013, I started the Ipi + Nivo phase I trial.

Today after six years, I am treatment free, with no active melanoma, having CT scans every six months.

3. What role have your friends and family played in your cancer journey?

 

My children and my sister’s family support me in every way. They trusted my decisions and showed a significant involvement in the process of my healing.

4. How did your oncologist speak to you about clinical trials?

 

The idea to join a clinical trial came from my friend/colleague, not from my oncologist. At that time, there was nothing for me in Israel, and Israeli oncologists do not recommend going abroad for clinical trials.

5. What made you decide to participate in a clinical trial?

 

I am a scientist, and I realized there was no other promising treatment for me, just an extension of life of less than one year.

6. What was your clinical trial experience like?

 

My physician in MSKCC conveyed optimism from the first moment: “You will be fine.” He thoroughly explained what I am going to get, what obstacles there might be, and how we can overcome the expected difficulties. The entire team was kind, patient, attentive, and caring.

The only thing I hated was all the imaging tests the clinical trial required. I had to take the risk since metastatic melanoma is much more dangerous than 3-4 additional scans.

7. What do you think people should know about clinical trials, and take into account when considering to participate?

 

People should know that clinical trials are not “scientists playing with our lives” any more.

A clinical trial can save your life!!! You should consult your oncologist about the best choice for you and be aware of all its advantages and disadvantages. When you are entirely whole with the decision, the coping will be more comfortable, as well as the chance to recover.