How one cancer survivor sought out the best treatment

Seeking out the best treatment option is an issue I've been advocating for two years.  I got an email from a fellow melanoma patient who happened on the blog, thanked me for the voice I provide, and asked how she could help raise awareness.  She was thinking "how can I volunteer?" and after hearing part of her story, I was thinking, "Cancer patients need to hear how Meredith Horn got herself the treatment that is making her a survivor".  Here is Meredith's guest blog:

T.J.: Your story follows many parallels to mine – tell me how this started and what your reaction was?

I was 32 years old, happy and healthy with a beautiful family. We were visiting extended family last year in Mississippi for the wedding of my sister-in-law and my youngest daughter's birthday party. I had just quit a job I loved to spend more time with our children, and my husband had just started a promising and successful business in Texas, where we lived.

I was a three-year melanoma stage II survivor, fortunate to escape that initial diagnosis with just surgery, a large area excision on my chest, and no treatment. My bi-annual scans were due the week after the family wedding, so I got them done in Mississippi out of convenience. They showed that the tiny lung nodules, first visible over a year ago, had doubled in size. A needle biopsy one week later confirmed our worst fears - melanoma had returned. Stage 4 cancer. A "you have 14 months left" prognosis. Just like that, my happy little world turned upside down.

T.J.: Sounds like a wonderful vacation, up until the "stage IV" part. What did you do?

We immediately flew out to UCLA to talk options with my oncologist, whom I had seen after my family practitioner had made the first (stage II) diagnosis in 2011. After a two-hour visit, he told us about a combination immunotherapy clinical trial at UCLA that was seeing very promising results, even remission. Unfortunately, there was not an available trial spot open, and my doctor could not promise when there might be one.  He recommended I immediately start Yervoy, but the response rates were not good. The more we looked, the more we found that melanoma research was exploding with breakthroughs being tested in clinical trials. This gave us the glimmer of hope that we so desperately needed, and made us believe a clinical trial was my best route to beat this thing.

We made the decision to temporarily move back to Mississippi, where both of our families live, to help with our two young children, and got to work immediately. My in-laws' dining room became our makeshift "war room", and for 12 hours a day, we scoured www.clinicaltrials.gov, drug company websites, and contacted every major cancer hospital to see if they were hosting UCLA's combination trial. We made a list of the cancer centers and wrote down every melanoma trial they hosted, so that we could discuss all options with our oncologist.

This process was EXTREMELY stressful and overwhelming. We were on the phone or scouring websites, ALL. DAY. LONG. With the added stress of knowing I was not getting any medicine to combat the growing cancer in my lungs, many times I wanted to abandon this strategy altogether and just start the Yervoy. I'm so thankful we had a strong support system that encouraged us to stay the course. And equally thankful for those friends who brought over chocolate and wine.

T.J.: There was some uncertainty, and a steep learning curve, that we both went through waiting for our first treatments.  Share what you learned in this process.

One of the clinical trial research nurses told us you cannot be on a waiting list to be a trial participant, unless you are a patient at a hospital hosting the trial. Good to know! (Right?) So we amended the game plan and started booking appointments at cancer centers hosting melanoma trials. Living in a small Mississippi town, two hours from a major airport, this meant planning long trips and booking airfare.

Our first appointment was close to home, at Ingram Cancer Center in Nashville, TN. We took our list of clinical trials and pelted them with questions.  The oncologist went into detail about the available trials at Ingram, as well as ones we researched that were not available there. We asked for his top 3 trial suggestions, and his first choice was a Phase 1 trial in Boston. He even contacted a friend at Massachusetts General on our behalf.

We continued making appointments at other cancer centers, and honed in on finding hospitals that were hosting the Phase 1 trial and the trial from UCLA.  Many doctors were kind enough to discuss trials over the phone before I actually went for an appointment. This was a huge time and money saver. Doctors are my heroes - oncologists especially.

T.J.:  You initially didn't get into the Phase I trial at Mass. General, but made the trip anyway. Your story of what happened next was similar to my first trial experience.  How did you make it happen?

Mass. General called to let me know the Phase 1 trial was currently full, but he would make himself available to meet and discuss other options. Knowing we had to be a patient to get on the waiting list, we flew to Boston and spent close to 3 hours consulting with them.  After going through the options and expressing my disappointment over not getting into the trial, he told us sometimes a trial sponsor will open an extra slot in a full trial when the doctor requests one.  We were four weeks into my diagnosis; it was time to go with plan B, IL-2 at Ingram, barring a spot in the trial.

So imagine our surprise and RELIEF when Dr. Sullivan at Mass. General called me the following Monday to let us know a spot had opened in the trial that wasn't available three days before. I collapsed into tears and then broke out into a happy dance, (think Elaine Benes).  We knew this would be a HUGE commitment of our finances, time, and separation from our girls for several days a month, but it was a no brainer. I wanted to live, and we were willing to make whatever sacrifices it took for my survival.

T.J.:  So what are the sacrifices you – and your family – continue to make in order to get treatment?  

The treatment schedule is every other Monday for 24 months, with occasional additional trips for lab work. Our commitment to this trial requires that every other Sunday, we drive three hours to Memphis, fly to Boston, and check into a hotel for two nights. Treatments are pretty much an all-day ordeal on Monday, so we return home early Tuesday. My parents and in-laws graciously take turns watching the girls for us on treatment weeks. SO MANY people have shared their time, resources and energy to make this happen. We could not do this without the help and prayers of so many people. All of you have sacrificed to make this trial possible, and we will never be able to thank you enough.

T.J.: How are treatments going - what's the latest update?

My first treatment was October 20, 2014. I just finished my 14^th, and y'all, it is WORKING. My tumors are, in the words of the radiologist, "melting away." Thrilled/Thankful/Relieved/ECSTATIC doesn't even begin to describe our feelings after my first scans came back positive in December. The side effects have been minimal and manageable. It has been the best-case scenario in a worst-case situation.

T.J.: What advice would you give to someone in a similar situation?

DO NOT LOSE HOPE. Your life matters, so put on the boxing gloves and prepare for a fight. In the words of my adorably blunt sister, "Meredith, your cancer is exhausting."  It's true - cancer IS exhausting. Finding your treatment plan is just the first step! A good sense of humor is essential; a strong support group is just as important. Surround yourself with people who point you to the hope that exists today for metastatic melanoma patients, thanks to the amazing breakthroughs in research the past few years. There is so much hope, but not without work on your part (and possibly a few "no's" before you get a "yes"). You will have to research to find the very best treatment option. You may have to travel long distances to access those treatments. You may face inclement weather, airline delays, and, if you are traveling to Boston, historic snowfalls. But really, is there a more important investment/commitment you can make?

If you choose a clinical trial, these tips will help you navigate the process a little easier.

Most importantly, find a doctor you trust and let them steer you towards a treatment plan that is best for you. Take it one day at a time. One step at a time. And before you know it, you'll be off and running.

"Out of suffering have emerged the strongest souls; the most massive characters are seared with scars." ― Kahlil Gibran

T.J. Note: Thanks to Meredith for her willingness to share her story; the biggest difference between our narratives was the number of y'all's I had to edit out! She even has a blog! Luckily that seems to include our current status and future prognosis. Good luck Meredith!

T.J. Sharpe shares his fight against Stage 4 Melanoma in the Patient #1 blog. Read more »