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I have been very private about my battle with melanoma up until now. I figured after the 1st, 2nd, 3rd and 4th surgery that all of my cancer would be gone. I thought after receiving several different immunotherapy drugs it would completely wipe it out as it did for Jimmy Carter or my dear friend, Brenda. But here I am today, almost 3 years later from my initial diagnosis, looking for yet another treatment option. I traveled down to Moffitt Cancer Center in Tampa last week looking to embark on a new chapter in this journey for finding a cure for my cancer.
October 2015: I received a call from my dermatologist that the mole between my two toes on my left foot (I had it my entire life and it started to grow and take off in a 3-6 month period) that she had removed the week prior was melanoma. I had to sit down and take it all in. I thought melanoma was something “old” people got.. not someone that was 45 years old. Next thing I know I am meeting with a surgical oncologist at Northside Hospital and the week of Thanksgiving I was having my foot operated on along with getting a painful injection at their nuclear medicine department for a sentinel node biopsy to see if the cancer had spread into my lymph nodes. A week after my surgery they called and said I had a positive lymph node, the cancer had spread into my left groin lymph nodes. I was hoping that the melanoma had remained localized in my foot so that the surgery would have taken care of it all. I was in a wheelchair and on crutches for a month. I had a skin graft taken off my left hip. My foot was healing very slowly and it made any normal daily activities difficult. I was still recovering and now I was facing yet another big surgery. Over the next several months, I met with several surgical oncologists for second opinions and landed in the care of Dr. Delman and Dr. Kudchadkar at Emory Winship Cancer Institute.
February 2016: I had my second surgery performed at Emory. They had to resect my foot again to gain clear margin, another skin graft from my right hip and they removed all my lymph nodes in my left groin. Wheelchair and crutches again for a month. I had a drain that had to be emptied every several hours for 2-3 weeks. Once the drain came out my groin and left thigh swelled up like I had been stung by 1,000 bees.. it was very painful. I was unable to walk or do any normal activities for several months.
Next up I enrolled in a 50/50 double blind trial at Emory for Keytruda a.k.a. pembrolizumab - the wonder drug that worked for Jimmy Carter’s brain tumor. I was stage 3B, and the only way I had access to this drug was through a clinical trial. I had a 50/50 chance of getting the placebo or the real thing. I decided it was worth the risk and started receiving infusions every 3 weeks. I felt great and had no reoccurrence of melanoma. Everything was looking positive… until my 18th infusion. I felt a hard lump on my left thigh. After a needle biopsy, I was told that my melanoma had returned after 15 months; I had been receiving the placebo after they unblinded my file. I was crushed. I was sure I had been receiving the real drug and it had been keeping my cancer at bay. Another surgery was scheduled to remove the small tumor at the end of June 2017. A month following surgery, another tumor popped up an inch from the one that had just been removed. So my fourth surgery to remove that tumor was in August 2017. We wanted to start off with a clean slate heading into my upcoming rounds of Keytruda infusions. The “real” drug this time!
I began the infusions at the end of August, and within a month or two, I had 7 new tumors. After 4 rounds of this drug, scans showed “progression of disease.” We added TVEC injections where they inject a deactivated virus directly into the tumors, not a fun process at all!! On I went with 4 more rounds of Keytruda with the TVEC injections. Scans again showed further progression of disease. They determined the Keytruda was not working and neither were the TVEC injections, so we immediately stopped treatment. Again, this felt like a huge punch in the stomach. I was devastated.
Dr. Kudchadkar, my awesome medical oncologist at Emory, said it was time to go all out and hit these tumors hard – my staging had been upped to Stage 3C. We need to try a double immunotherapy drug treatment with Ipilimumab and Nivolumab. I would do 4 rounds of the double drug and then drop down to the single drug of Nivolumab drug for up to two years. I had heard and read so many horrible things about the side effects of the Ipilimumab drug alone and now they want to infuse me with both drugs? I took a pause in treatment so that I had some time to take it all in. I was already experiencing severe joint pain from the prior Keytruda infusions that made me feel like I was 90 years old; some days I had extreme difficulty climbing a flight of stairs when it was really flared up.
After talking it over further with my doctor and family and friends, I decided it was my best option and proceeded to start treatment on April 10th. I was very nervous sitting there in the infusion center as they hooked up each bag and started the drugs into my port. Was I going to have the terrible diarrhea or colitis, was it going to attack my healthy organs, have extreme fatigue, and so on? Some patients reported that they couldn’t even tolerate the treatment after 2 infusions. Over the next several months I received all 4 infusions, and had no side effects from the drugs. That felt like a tiny success! The tumors on my thigh and groin were growing visibly larger, some of them very red and angry looking. My doctor felt that it could be “pseudo-progression” where they swell up and get angry because the drug is working and attacking the cancer. We would just have to wait it out until the next round of scans at the end of June to see what was occurring below the surface. These growing tumors on my thigh/groin area and are a daily reminder of the cancer growing inside of me.
June 2018: My PET scans were done on June 29th, and the next week I received a call from Emory that some spots were very concerning. The tumors had grown by over 1 cm. I had new tumors located in my pelvic lymph nodes and several in the muscle on top of my left thigh. My heart sank. My cancer is not responding to immunotherapy (I had now received all 3 immunotherapy drugs given to melanoma patients). That was a very difficult phone call. They discussed the option of doing an isolated limb infusion with chemotherapy and removing my pelvic lymph nodes. They perform this procedure about 2 times a year at Emory. I hung up the phone and was extremely distraught. Everyone had been hopeful that the double immunotherapy drugs would do the trick as now my treatment options are now quickly narrowing.
The following week I met with Dr. Kudchadkar and she said I needed to head down to Moffitt Cancer Center for this new trial with TIL also called adoptive cell therapy. They remove one of your tumors, take the cancer cells in a lab and infuse it with IL-2 and see what cells respond. They take these responsive T-cells and infuse them back into your body to fight off the cancer. Using your own cancer cells to fight.. this is a very targeted type of therapy.
August 2018: After 3 days of being scanned from head to toe with CT scans, brain MRI, echocardiogram and EKG, nuclear stress test, bloodwork, etc. at Moffitt Cancer Center, I am looking at participating in this trial. I have been cleared as a candidate and things are starting to move rather quickly.
I am scheduled to go down to Tampa on Sept 13th and have 1-2 tumors surgically removed and sent to the lab. Once the cells are showing a response about 3-4 weeks later, the treatment process will begin. And it’s going to be a grueling one. I will receive chemo every day for 7 days straight in order to strip down my immune system so it will not fight off the cells they are going to put back into my body. I am told that I will lose all of my hair -that brought things into perspective for me as both a woman and a cancer patient.
Immediately following the chemo, I will receive the TIL cells back into my body via infusion of 5 bags over a day and then spend the next several days after TIL therapy receiving high dose IL-2 infusions -which they have described as being harsher than the chemo treatments. I will be hospitalized during the entire treatment and will remain hospitalized for an additional 7-14 days following treatment. I am anticipating being in Tampa for 3-4 weeks total receiving treatment.
As I was signing the 23 page trial consent form at Moffit last week, and the doctor was describing the treatment process with all of the potential sides effects and risks, I kept thinking why am I signing up for all this again? It’s been overwhelming and scary to think about how sick I could potentially be and how long of a recovery I will have ahead of me. But then I remind myself that I have to stay positive. I could be in that lucky 30% that will have finally found a cure for melanoma. If this treatment works, I won’t have to continue receiving infusions every 2-3 weeks, or have more surgeries, and that makes me smile after 3 long years of being a cancer patient…. Stay tuned for further updates... I am grateful for everyone’s love and support!