Last night my triathlete friend Karen asked me what the deal was with clinical trials. Like, why do I have to shop for a clinical trial to help me find a cure for my cancer? She was correct in thinking that there is an established treatment for melanoma stage 3a. However, the advantage of participating in a clinical trial, as explained to me by my surgeon yesterday, is that medicine recently approved by the FDA for those with cancer stage 4 could potentially be tested on those of us with stage 3. The FDA approves a substance to battle cancer if it shows promise. The purpose of a clinical trial for those of us in stage 3 would help principals determine if a new treatment is more effective than the established treatment.
The website clinicaltrials.gov lists all of the trials going on — for everything, not just cancer. Type in a keyword (malady) and a location (Honolulu) and watch the results come up. For me there were a few but they were closed in Honolulu. We would consider a trial on the Mainland, but transportation and lodging costs would be tough to handle, especially if it were for a year or more. Plus, I have two teenage daughters. One will graduate in June. I want to be here. I want to see that.
Using the keywords melanoma, Honolulu, and surgery, I sifted through the pages and found three clinical trials that might fit and emailed the links to my oncologist. One was closed to adults, one focused on a vaccine and was in its first phase, and another one was not yet open, but was exactly what I needed. However, there was no indication it would be in Honolulu:
High-Dose Recombinant Interferon Alfa-2B or Pembrolizumab in Treating Patients With Stage III-IV High Risk Melanoma That Has Been Removed by Surgery
This is a double-blind study, so if I were to enroll, I would get either Interferon or Pembrolizumab. If I don’t participate, I would be administered Interferon, because it is in Kaiser Permanente’s formulary. What do I have to lose if I get the one I would be prescribed or Pembrolizumab, which is being tested?
The page indicated that the study would happen in September, but, since it isn’t yet recruiting, I sent an email to the principal. His nurses sent his responses back to me, including that the SWOG-sponsored study will start in a few weeks, including here in Hawaii. Kaiser Permanente participates in SWOG studies, and the nurses told me that the study will begin here about the same time as it would at various locations on the Mainland.
The fine print at the Clinical Trials website for this particular study indicates that my surgery would have to be within a 98-day window. I’m 30 days beyond my last surgery, so it looks like I will make the cut. Other things such as a full-body physical, blood tests, and the imaging that was conducted before the surgeries will also be part of my application. Fortunately for me, Kaiser has an oncology research area here and they are already helping me get ready for enrollment. Yesterday was the first time I had heard of CareEveryWhere, a secure network that facilitates the sharing of patient medical information, which is truly necessary as trials blend patients and facilities from different healthcare organizations.
Consider me optimistic. My glass is half full most days. I will not deny that the dark clouds of funk do find me and psyche me out sometimes. At yesterday’s final post op, my surgeon said she was pleased at how well I am healing. The first cut behind my knee surprised all of us by healing well enough to not need the skin graft. That was a big, deep hole! She said I have a good attitude, which is HUGE when it comes to battling cancer or fighting fat or training for a triathlon. HUGE.
You know what else is HUGE? That my friends and family have been so supportive. High school classmates who are survivors told me their inspiring stories. I have friends who share information about holistic healing and miracle foods (hello turmeric). One classmate, whose son is in residence in Cleveland, asked him to help me find a trial. He asked three other doctors. I was so pleased when the one they thought best was the one I had found myself. Nearly everyday I get a greeting card from someone. And my friend Michelle, who lives here in Hawaii and is one of my Boca Hawaii teammates, has been sending me colorful Hawaiian postcards signed by various coaches and other teammates! Crack me up! One had a recipe for a pina colada. Others are just beautiful shots of our Island home.
Finally, yesterday I was given the green light to begin walking on our treadmill for 30 minutes at a time. Once my wounds are fully healed I can start swimming again, going the distance at a leisurely pace before working on speed. I can’t get on a bike yet, at least for a few months, because the lymph node surgical site is right at the bend of the hip and the torso. You can still see my stitches. My body is not yet ready for it. My trainer is home and eventually, I’ll set it up and start riding in the backyard to prepare myself for getting back into my Boca Hawaii workouts.
I am able to cook. We are enjoying #EatAtMoms meals as often as possible. I won’t know how I’ll feel once the immunotherapy begins. Stay tuned. I may need to lean on you even more.