Meet Kelly Irvin: Stage IV Ovarian Cancer Thriver

We spoke with Kelly Irvin: author, cancer patient advocate, and Stage IV Ovarian Cancer Thriver. Read on to learn about her clinical trial experience and advice she has for other Stage IV cancer thrivers. 

What is your cancer story, and where are you now on that journey? 

My journey started before I received my cancer diagnosis. I just didn’t realize it. 

An oncologist was seeing me to help manage some abnormal mammograms. She did a baseline chest CT, which discovered masses in the lining of my lungs. They completed a biopsy, and it was cancer. Once I was diagnosed, the doctors performed a PET scan to see where the cancer originated. It was ovarian cancer. 

A few years before my diagnosis, I had seen my primary doctor for difficulty walking. Eventually, they sent me to a neurologist. My walking symptoms were getting worse and were similar to those of a patient with early-onset ALS. My neurologist thought I had primary lateral sclerosis, which is a form of ALS but considered more benign. I was reeling from that diagnosis, which I received in December 2015. In January 2016, I finally figured out the real reason why my walking had worsened. I had ovarian cancer.

My oncologist and neurologist decided to look into the possibility that my walking difficulties were caused by paraneoplastic syndrome. This syndrome is caused when your immune system attacks your central nervous system when it’s trying to fight the cancer. You end up with neurological damage on top of the cancer, which was just devastating. So I had nerve damage and mobility limitations, a double whammy. 

As far as my cancer journey goes, I did the usual. I had surgery with a gynecological oncologist who specializes in treating ovarian cancer, which went very well for me. I also went through chemotherapy and lived with no evidence of disease for 11 months. Then, my cancer recurred, so I completed chemotherapy again. The cancer returned after another 8 months.

Since my cancer was Stage IV when it was discovered, my oncologist said I would be in treatment for the rest of my life.

That was huge for me. Not only would I be dealing with the mobility issues, but I would also be dealing with the side effects of treatment permanently. Even when I had No Evidence of Disease and was on maintenance drugs, I experienced many side effects.

Ovarian cancer is almost always diagnosed in later stages because there are usually no overt symptoms that don’t seem like symptoms of some other issue. Doctors tend to think that something else is going on and don’t come to the conclusion of ovarian cancer until much later. Not having a diagnostic tool for ovarian cancer makes things very difficult. 

When I started getting treatment, there was a new drug called Avastin that was being added to treatment regimens and then used for maintenance for people who were No Evidence of Disease (NED). I took Avastin for several years, and it was $23,000 per treatment. Drug manufacturers will offer assistance, but when I went on disability, I was no longer eligible for that. At the time, a federal law prohibited Medicare patients from getting co-pay assistance because they want those patients to take the generic drugs. Well, there are no generic versions of these cancer medications. So, I had to swap to another medication entirely.

I took Lynparza for a brief period of time. My bill for that medication would have been $950 a month, which nobody can sustain. So I had to look for other options. These are the things that cancer patients in this country face because of the exorbitant cost of medications and some of the strange ways that we deal with medication cost regulation on the national level.

The good news is that a law passed by Congress will go into effect on Jan. 1, 2025, that sets a $2,000 cap on out-of-pocket expenses for prescription drugs for Medicare patients. I can't emphasize how huge this is--and long overdue!

My oncologist was getting ready to retire and wanted me to try a clinical trial before I ran out of options for standard of care. She sent me to an oncologist who had started a series of phase-one clinical trials. He has at least five clinics now and is incredibly well-respected in the research space. I’ve been seeing him for two and ½ years and am currently in a working clinical trial. This trial has been successful at keeping my cancer at bay for 20 months! I just started month 21 and am mostly focused on managing my side effects from the trial medication. I’m so blessed that it’s working for me.

What would you tell someone interested in a clinical trial?

Don’t wait to get into a clinical trial. Many people think of clinical trials as a last resort, but they really don’t have to be. You can look for clinical trials anytime during your cancer journey. I have the advantage of living 30 minutes from the phase one clinic and living within driving distance of MD Anderson in Houston. 

Visit clinicaltrials.gov and find out if there are any active trials related to your specific type of cancer. You can put in parameters of how far you want to travel, and the website will tell you which trials are closest to you, whether they’re recruiting, their criteria for inclusion,, and their exclusions. With this information, you can advocate for yourself with your oncologist. “I found out about this clinical trial that I’m interested in, can you help me?” The oncologist I’m working with has also started clinical trials in San Antonio, Austin, Dallas, Virginia, and Spain. There are many others like him. 

Clinical trials all look different. For mine, I take pills every day. I log when I take my pills and have to fast before and after taking one of the drugs. Other people have trials where they do infusions every few weeks. Clinical trials are not easy, but I don’t want to complain since mine is working. Another thing people with cancer and other chronic diseases struggle with in this country is the astronomical cost of drugs. It’s unbelievable to me how much cancer drugs cost.

I’m fortunate that I have good insurance that has helped keep us from bankruptcy, but many cancer patients aren’t as lucky. 

Drugs like the one I’m in a clinical trial for now will cost thousands of thousands of dollars if they make it through the approval process. We’re just in phase one; there are two more phases, and then the drug has to be approved by the FDA. It takes years, and then it will cost an astronomical amount after all those years. In my case, I’m the only one left in this clinical trial. They’re allowing me to continue the medication, but they’ve discontinued the trial and are moving in another direction. I don’t know if this drug will ever be available to other women with ovarian cancer. My oncologist who’s in the research field says some other company will pick it up if they see a positive impact, but that it won’t currently be going into phase two or three until then. It’s part of the challenge of research. 

There’s also a question of economics when it comes to research. Money usually goes to cancers that have more patients, like colon cancer or breast cancer. More people have those diseases, so they are going to get more attention from research organizations. It’s understandable, but it can be frustrating for those with rarer cancers. For ovarian cancer, it’s only women who get it, and fewer women are diagnosed with it than other types of cancer. So, it’s harder for companies to receive funds and focus on researching this type of cancer. This is one of the reasons why I think we don’t have a consistent diagnostic tool yet.

Even with this, there’s so much hope. Women need to have hope. There are drugs that I’m taking now that were not available when I was diagnosed, and that was less than 10 years ago. Cancer patients need to be aware of their options. My doctor told me, “You just need to hang in there. The longer you’re here, the more options for treatment there will be.” And so far, that has proven true for me. This clinical trial I’m in didn’t exist when I was first diagnosed. If we can just hang in there, new opportunities will come up.

How do you cope with people outside the cancer community giving unwanted advice? 

This happened to me pretty frequently when I was first diagnosed. I had someone tell me in the cancer center of the hospital that I shouldn’t eat sugar. I don’t know if the person was a patient or if she was with another patient. One of the first times I had treatment in the infusion room, my glucose was actually low. My doctor told me to eat a cookie. So, when this person told me not to eat sugar, I said, “I get my medical advice from my doctor, not from a stranger.” 

I did ALL the right things before I was diagnosed. I exercised, and I still exercise every day. I ate healthily and very carefully. And I still have cancer. So you can’t tell me that eating a certain way is going to cure my cancer. There’s no given that it will. I’m just trying to be healthy and eat the things that I like in moderation. I lost my sense of smell as a part of the neurological damage I have and the cancer drugs that I have had to take. There are only certain things that I can taste. I can’t really taste most things, but I can definitely taste SWEET! People may have good intentions and a good heart, but they’re not walking in your shoes. 

It’s okay to say, “I appreciate your input, but I get my advice from my doctor.” You don’t have to be ugly about it, but you don’t have to sit there and take it. There was another incident where someone came up to me and said, “I think you’re using the wrong kind of cane.” I use a walker now, but I used this cane when my mobility issues first cropped up. I told her, “This is what my doctor told me to use.” I can’t imagine how some people feel like it’s OK for them to come up to you and tell you things about situations they don’t know anything about. It’s okay for cancer patients to stand up to these people and say, “You’re out of line.”

What message do you have for others who have recently been diagnosed with cancer, especially Stage IV cancer? 

It’s so important to be your own advocate. You will suddenly become all of these medical words you don’t understand. It’s so important to do the research and try to understand everything you can about your disease.

At the same time, be careful where you get your information. There’s all kinds of crazy stuff on the Internet. Make sure you go to reputable websites. The CDC and National Cancer Institute have accurate information. Chemo Care has further information on different chemotherapy drugs and their side effects. 

When you go to the doctor, make a list of questions each time so you remember what you want to ask. That way, you don’t get flustered in the office, and you get important information. If it helps, you can also take someone with you or ask to record the conversation. There are so many emotions involved with a cancer diagnosis that it can be difficult to keep all the information straight. But try to slow down and take the time to get all the important information. If your oncologist isn’t taking the time to explain things to you, you have the right to find a new one. I had the most wonderful oncologist who answered all my questions, hugged me, and gave me her cell phone number in case I ever needed her. “Call me anytime.” I felt so blessed to have her.

There is hope.

The other thing I would say to those in the cancer community is that there is hope. Look at clinicaltrials.gov and see what progress is being made for our community. Be a member and active participant of your care team. You’re part of the team that’s deciding what’s going to happen to your body. You can take the recommendations of your doctor but have an educated understanding of why that route is the best route.

Don’t be afraid to get a second opinion. I think a lot of us are afraid of doing that, but it’s within your right. Any doctor should be willing to help you get a second opinion. 

Try to get backup from a friend or a loved one who can help you remember and keep track of everything.

I belong to a closed Facebook group for ovarian cancer patients and find that very helpful. You just have to be careful of patients who think their experience is everybody’s experience. That’s just not the case. Everybody’s different. Take everything with a grain of salt, but you can find a lot of helpful advice for dealing with side effects in those groups. You can also both find support and give support to other women dealing with cancer. 

I also participated in a virtual support group through Texas Oncology, where we met on Zoom. I still Zoom with one group member once a month to talk about life. She has a form of leukemia, but we’re still able to talk about what we’re going through and relate to each other. Support and camaraderie are important.


Photo courtesy of author.