Nancy Cleveland is a GCI patient partner, ovarian cancer survivor, and advocate. On June 14th, 2019, during a routine laparoscopic procedure for gallstones, Nancy was diagnosed with Stage 3C Ovarian Cancer. Following her diagnosis, Nancy went on to participate in the GOTFIRST clinical trial, which looked at investigating the effectiveness of PARP inhibitors in treating stage III and IV ovarian cancer.  

Although Nancy was initially in the study’s placebo group, the results of patients treated with Niraparib (the study drug) were so strong that the placebo group was canceled and the drug was offered to Nancy. After Niraparib, surgery, and several rounds of chemotherapy, Nancy is now in remission.  

She eagerly uses her time and resources to give back to the research and gynecologic cancer community as a GCI patient partner and active participant in community fundraisers. Nancy is always excited to share her experience with ovarian cancer and clinical trials with the hopes of inspiring and connecting with others.  

Q: What made you decide to participate in a clinical trial?  

There is always so much information to digest when you are first diagnosed with cancer. My oncologist, Dr. Paul Hoskins, was careful to explain my type of cancer and the regular protocol that would be ahead of me.  He also told me that I had an additional option as far as treatment was concerned and that I was a good candidate for a clinical drug trial that was beginning at BC Cancer.  

BC Cancer defines clinical trials as “A necessary step in cutting-edge research aimed at identifying life-extending and life-saving patient treatment, finding safer and more effective treatments and improving quality of life for those living with and after cancer. We are in an era of exciting discoveries …”

With that being said, the opportunity to participate in and contribute to such incredible research seemed exciting to me. 

Another great thing about clinical trials is the hope that it provides. It gives you hope that you can overcome this cancer and it gives you hope that you can help others beat their cancers as well. These clinical trials really help open doors for those who come after you, and I wanted to be a part of that. As a retired teacher and lifelong learner, I was really interested in participating in the clinical trial to give back in some way to this research. 

Q: What type of trial were you involved in?  

The GOTFIRST trial was a randomized, double-blind phase three clinical trial. This particular clinical trial was looking at how new medication (immunotherapy and a PARP Inhibitor Niraparib) works in comparison to existing medications that are used to treat ovarian cancer. Phase III trials are usually double-blind, meaning that neither the participant nor the investigator knows which medication you are taking.  

Results of a Phase III study may change the standard approach to treatment, which was exactly what happened. I was in the placebo group, and as the study progressed, previous clinical trial findings and early findings from this trial found that the drug was indeed found to be somewhat successful. Consequently, the placebo group was canceled and I was able to receive the drug within a few weeks. 

Participation is always entirely voluntary. Even after you have agreed to be part of a clinical trial, you may choose to withdraw at any time, without any negative consequences to medical care or services that you have been receiving. All risks were carefully explained and confidentiality was maintained throughout.  

Q: Are clinical trials safe? What are possible risks compared with standard of care?  

I can’t speak for all clinical trials, but certainly, from my point of view, this trial was very safe. Any side effects I had were dealt with quickly and efficiently and in fact, I found the care within the clinical trial at a much higher level than regular care (although that was excellent too). I had more doctor visits, extra bloodwork, and CT scans, which were all in addition to the regular standard of care.  

Standard of care continues. My treatment plan was the same as all other Stage 3 ovarian cancer patients (i.e. chemo and surgery), but extra testing/appointments were an important part of the clinical trial. And I welcomed that! Time was not an issue for me because I was retired. 

As far as safety goes, you will not be asked to participate in a clinical trial unless your doctor and the clinical trial team think it’s a good option for you to consider.  The aim of the trial is to ensure that the benefits will be greater than the risks.  

Q: What benefits come out of clinical trials?  

There are many benefits to clinical trials. Firstly, you maintain an active role in your own healthcare throughout. Treatments were monitored closely, medical personnel watched carefully for side effects. From decision-making and treatment modifications, I was given the right to be an active participant in every way. 

Another benefit is that you gain access to cutting-edge research before it is available to the public, and you help contribute to the development of new and important treatments. As I was sitting in that chair having chemo a few years ago, I was well aware that there were other women who went before me, to make that drug concoction available to me today. It was important for me to give back, especially since I had the opportunity to participate in the clinical trial. 

Finally, as I noted in the last question, care was exemplary. In fact, I was surprised at the contrast once I was taken off the drug trial. Not that regular care isn’t good, it’s great! But the extra appointments and scans/bloodwork were far more reassuring than I had ever imagined.  

Q: How was your experience with participating in a clinical trial at BC Cancer?  

I loved being part of this clinical trial! The standard of care at BC Cancer is already phenomenal, but the standard of care in a clinical trial is just out of this world. You are watched a lot more closely– more bloodwork, more appointments, and for me, I had a study drug nurse, which was super helpful in giving me reassurance and just knowing that they were available by phone if I had any questions.  

Q: What would you tell someone who is considering participating in a clinical trial?  

We wouldn’t be where we are today with ovarian cancer treatment without clinical trials.  

I don’t think we let people know enough about the amazing research that is going on here at BC Cancer. You don’t have to go far in the world to realize and hear about the incredible new findings for treatment that our researchers and oncologists are discovering. I’ve said earlier to friends and family too, that if you’re going to have ovarian cancer, now is the time to have it. There is just so much incredible work and research happening in this space. Even PARP inhibitors, which was the drug used in my clinical trial, has become a very promising treatment for those of us diagnosed with ovarian cancer.  

For those starting off on their cancer journey, just know you are not alone. You’re never alone. You’ve got a real safety net, a cheering squad with your care team and your friends and family. Clinical trials replace fear with love and hope.