Cervivor visits Advaxis

Clinical trials continue to be a mystery to many individuals. On September 30th, 2017 Cervivor, along with several advocacy groups, had the great opportunity of gathering at Advaxis for a collaborative meeting to learn more about clinical trials and how they can impact the future of cancer treatment, including innovations in the area of cervical cancer treatment.

Through innovation, collaboration, and dedication we can help improve the accessibility of clinical trials to patients; therefore, increasing participation in clinical trial research. This research is necessary to introduce cervical cancer treatment options with lower risks and side effects.

Dr. Sharad Ghamande of Georgia is at the forefront of clinical trial research and application in his gynecologic oncology practice. As he noted, “Cervical cancer is the worst cancer for women worldwide.” There has to be a more effective way to treat this prevalent cancer.

Next, we headed out for a tour. This was one of the most amazing things we were able to do while at Advaxis! We started out by learning how the clinical trials Advaxis is currently running were developed and are progressing and then we actually got to head out into the building and see where the action happened! There were people hard at work throughout the building and you could tell the dedication to improving cancer care was in the air. One of the employees told us that he started working there because he knew, there just had to be a better way to treat cancer.

I was honored to serve on a panel with Dr. Ghamande and John Heyburn of Advaxis to discuss clinical trials. I served on the panel to bring the patient perspective to the discussion. Over the past several months I have been researching clinical trials, applying to many trials, and recently began participation in a clinical trial. As a panel, we discussed many barriers in the current clinical trial structure: many individuals do not know what a clinical trial is or that they may be eligible for one; some clinicians only offer clinical trials as a last resort, or, not at all; and some patients become frustrated with the process it takes to participate in a clinical trial once they begin.

As a patient who recently went through the process of finding a clinical trial I can tell you that it was stressful at times. I was declined from one trial due to the fact that another site filled the open slot before I could begin testing to see if I qualified, I was declined from another clinical trial due to the fact that I had been treated with a specific chemo on two separate occasions, an additional trial I missed out on due to my insurance declining an accompanying medication while the open slot filled up. As a patient, I felt defeated and scared. I was terrified due to the fact that while all of this searching was going on I was not being treated. Once we found a clinical trial to apply to I had to start a battery of tests to ensure that I would be able to participate. I was so worried that something would happen and I would end up not qualifying I didn’t even tell anyone I was starting a trial until I was physically hooked up to the infusion.

Serving on this panel was an amazing experience for me. I was honored to sit around the table with leadership from many organizations and share my experiences with them. It is amazing the power of a patient voice.

Are you currently in treatment for cervical cancer or recently in remission? There may be a clinical trial that is available which could meet your treatment needs. There are trials which work with concurrent treatment for active cancer and even trials which are available post-treatment to help ensure that you stay in remission. Reach out to Cervivor if you would like more information about clinical trials. Also, check out our clinical trial section on our website at http://cervivor.org/hpv-and-cervical-cancer/treatment-clinical-trials/.

To read more about Erica’s story check here: www.cervivor.org/erica

My “New Normal” and the Holidays

I am still trying to figure out how to be around myself and now the holidays are here.  I am expected to be around all these other people.  What am I getting myself into?

Over the past year, I’ve been navigating a very new life after whirlwind treatment for metastatic cervical cancer. Immediately after finishing treatment, I felt broken. My normal life as I knew it was over. I didn’t recognize myself.  My face and body didn’t seem to be my own. Throughout much of this year, my recovery consisted of a lot of alone time; time trying to figure out how to be myself. A lot of the time was spent chasing information (and then trying to remember it), advocating for the HPV vaccine, regaining strength, managing menopause, going to physical therapy, and trying to quell pain and anxiety…seemingly all while sitting on the toilet. Thanks to pelvic radiation for all those bathroom trips! I still have so far to go that it’s hard to picture a day when I’ll be fully recovered and be my “normal” self. That’s okay— I’ll manage. I have no other choice.

I’ve developed a lot of social anxiety – I often feel so isolated from others in their mid-30s.  I feel like they couldn’t possibly understand how I’d suffered – how I continue to suffer. It takes a lot of mental energy to function in the outside world.  It is mentally and physically so much easier to stay home than to go in public and deal with being in pain or in embarrassing situations (especially if I eat the wrong thing).  It takes a lot of convincing to even physically get out the door.

I am grateful for the holidays; this time of year, really forces me to suck it up and get out there.  I have found that once I get out socializing, I feel better for having done it and it gives me confidence that it will get easier. I adore the people I choose to spend my time with and laughter heals.

There are still challenges.  When going to a holiday party or night out, do I just pretend that I’m fine? I am surrounded by people who don’t understand what it took for me to even get out the door.  People who didn’t have to take Imodium, remember a coccyx pillow, put on compression garments, and maybe even take an Ativan just to get out the door? Yes, I pretend I am fine and that none of those things are going on. When people say, “oh you look great”? I say, “thank you.” When they ask how I’m doing? I respond the way we have all been taught, “I’m good, how are you?”

I respond in these ways because, I truly believe, people mean well and are being kind and polite; I assume they probably DON’T want to know the state of my bowels this evening or the fact that I used a whole tube of concealer under my tired eyes. While I am there, I’ll order my weak cranberry mimosa because I want to be normal again, but my body can no longer drink OJ, non-carbonated beverages, or much alcohol. In an act of self-care, I’ll allow myself to relax and just be with my loved ones, eat food that I shouldn’t and pretend remember that cancer doesn’t have me!

While out, I strive to continue enjoying the evening, as though my body won’t revolt in horror at the first chance it gets.  I know that this time socializing will come with a cost, it does most likely mean that I’ll spend the next day elevating swollen legs, possibly wearing a diaper, and I remember that still won’t be too much different from any other day when I am home.

My advice to anyone dealing with similar issues as mine and dreading the holiday event calendar due to all of the managing we must do just in order to show up: Be kind to yourself and listen to your body. If it’s telling you to rest, then rest. Show up everywhere or cancel plans with abandon. Enjoy the moments however you choose to celebrate, or not celebrate, the season. And always keep wipes in your purse.

Learn more about my story here: http://cervivor.org/stories/mary/