Patient’s Perspective

Several months ago I was approached by Cancer Commons and asked if I'd be interested in sharing my story/experiences with making the decision to participate in a clinical trial.  Of course, I'm more than willing to share my story and experiences.  If it helps 1 person in avoiding what I've gone thru, it's been worth it!

There are so many resources out there for patients and it can sometimes be a little overwhelming.  Here is the Q&A they did with me.  Lots of information... but they were trying to bring some patient experiences to how clinical trials work.  You can also read the article below.

Protect your skin!
Erin

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Patient’s Perspective: Erin Youngerberg’s Take on Melanoma

RYAN HOERGER AND ERIN YOUNGERBERG | 01 NOV 2013

Erin Youngerberg was diagnosed with melanoma in October, 2010, at age 32 years. Well-traveled and an avid photographer, she grew up in Minnesota, went to college and worked in Milwaukee, then made her way east, living in Ohio and North Carolina before ending up in Jersey City, just outside of New York City. After her diagnosis, she started a blog to keep folks back home updated. Called ‘Melanoma and the City,’ it tells the whole story: from appointments at Memorial Sloan-Kettering Cancer Center (MSKCC) in New York City to various city adventures; from treatment side effects to recipes for quinoa and tacos. Erin has also found herself dedicated to spreading the word about melanoma awareness. We asked her to take us through her melanoma story.
How did your melanoma experience begin?
I had a mole on my upper right back that was slightly raised and pink. It was perfectly round. I asked my primary doctor about it in 2009 and she said it was nothing to worry about. While I was out of the country and on vacation in September, 2010, it started to grow even larger and began to bleed. When I got back to the States, I immediately made an appointment to get it removed. The dermatologist said it was, “nothing,” and explained that in 2 weeks I’d get a letter in the mail.
What was your initial reaction when you heard that you had melanoma?
When the dermatologist called me and asked me to come in, I immediately felt sick to my stomach. I knew it was something bad. When I got there, she kept reading the report and saying, “it’s nodular… it’s nodular”; then she looked and me and told me to “breathe.”
What were your options? What was your initial course of action?
The day the dermatologist told me, she also made an appointment for me for the following day with a surgical oncologist at University of North Carolina-Chapel Hill. The oncologist explained that the first step was to do a wide local excision to make sure they got clear margins, along with a sentinel lymph node biopsy. My margins came back clear, but the sentinel lymph node came back positive for melanoma. So the next step was to have a computed tomography/positron emission tomography (CT/PET) scan, along with a magnetic resonance imaging (MRI) scan of my brain to make sure the melanoma hadn’t spread anywhere else. It hadn’t spread, so I then had all the lymph nodes under my right arm removed. At that point I was stage IIIb, so the course was interferon or nothing.
How did you decide to enroll in a clinical trial, as opposed to receiving a standard cancer treatment?
When diagnosed originally as stage III, I didn’t think interferon was the right option for me (it was the only standard option available to stage III patients). There was a clinical trial for Yervoy (ipilimumab) that I tried to get into at MSKCC in January, 2011. While trying to enter that trial, a CT scan showed more than a dozen nodules on my lungs. By the time the nodules were biopsied (through a video-assisted thorascopy, or VATS) and scanned again, they were all gone. The two that were removed came back positive for melanoma. I tried again for the Yervoy trial, but didn’t qualify. So we did a watch-and-wait until melanoma returned to my small intestine in May, 2012.
What did you do then? Did you do molecular testing for a genetic mutation? If so, which one?
I was positive for the BRAF mutation. I did about 4 months on Zelboraf (vemurafenib) from May through September.
Erin Tunnel View
Erin (left)
Did your doctor immediately recommend molecular testing or was it something you brought up?
My doctors did not immediately recommended molecular testing. Although, when I had the VATS procedure done, they did test me for BRAF. I asked my doctor at the time why my original tumor wasn’t tested and his response was that it was something new to many doctors. But his thoughts were that, given how things were going, it would just become standard to start testing for these mutations.
You eventually qualified for a clinical trial. Were you nervous about it? What would you say to someone who is concerned about whether it’s safe to take an experimental drug?
I was nervous about joining a clinical trial. The one I’m in now is for Merck’s anti-PD1 and it’s a phase I trial. When I tried for the Yervoy trial, I had a 50% chance of getting nothing. The current Merck trial made me nervous, being a phase I trial, because they were still testing for safety, so I could be randomized to a higher or lower dose. But I was glad that either way I’d get the drug! As for what I would say to someone about safety: there is a risk you take when joining a trial and figuring out how the drug will react with your body. The positive is that the doctors keep a very close eye on you!
What has been the most unexpected part of being involved in a clinical trial?
The most unexpected experience I’ve had from the clinical trial really has to do with the set-up at the hospital. A team of doctors treats me and, for a while in the beginning, it always felt like I was being treated by someone new. It made me worry that someone would miss something because no one really knew me.
Describe a typical day of being in your clinical trial.
A typical day is LONG! I usually arrive around 9:30 AM for blood work. I am normally taken in pretty quickly for that. Then I wait for the doctor and for blood results to come back. Then I wait… wait… wait. The frustrating part has been that I get a 30-minute intravenous drip for the anti-PD1, but I’m usually there from 9:30 AM to 2:00 PM.
My trial is every 3 weeks. I’m lucky that I’m pretty close to the clinic, so it takes me maybe 45 minutes or so on the subway to get to the hospital. Being in the trial doesn’t really change my daily routine, except that I have to make sure work is okay with me ‘working offsite’ on treatment days. So far, I’ve been lucky to have a very flexible employer.
How is the trial going?
I started the trial at the end of January. So far, I’m feeling pretty good. I’m lucky that these anti-PD1 drugs have very few side effects. I’ve also had positive results on my trial, with shrinkage at weeks 12, 16, and 24. We will take it!
Erin with Family
Erin with family
Why did you want to start a blog?
The main reason I started my blog was for my family. Several members weren’t on Facebook, so the blog seemed to be a great way to let them know my health updates, but also to make sure they knew I was okay and out living my life. I live some 1,200 miles from my family, so that has been tough on them.
The most rewarding part has been the folks who have reached out to me to let me know that it’s helped them.
What resources have been your most important sources of support?
I’ve reached out to several other melanoma patients whom I know on the trials. Also, there are two main support groups that I reach out to and participate in: the Melanoma International Foundation and the Melanoma Research Foundation. Both groups have a lot of the same people and are great resources to ask for advice and experiences.
What is the advice you find yourself most often giving to people newly diagnosed with melanoma?
I think for newly diagnosed people it’s letting them know that the statistics are scary, but so much has changed in the world of melanoma. I’m going on 2-plus years as stage IV and I’m still here. I’ve told folks that, unless they saw my CT scans or my scars, they would never know I had cancer. My blood work is usually perfect; I look fairly healthy! I’ve traveled a lot since being diagnosed (Thailand twice, Singapore, Scotland, and London for the Olympics last year).
I also make sure they are informed and seeing a melanoma specialist! This is very important because some of the general oncologists just aren’t aware of all the updates and changes.
Should newly diagnosed patients question their doctors in order to make sure they’re getting the best possible treatment?
YES! The patient is her or his own best advocate! Get advice and seek second opinions if needed!
As a patient, why is it important to share information about your treatment?
I debated whether to keep my melanoma private or share my experience. I decided it was important to share the experience. I know that if I’m going through something and I have questions, someone else might also! If I can share what I’ve been doing or going through, then maybe it will help someone else!
Do you sense that people with cancer are excited to donate their data for research? Why do you think they might be hesitant?
I think it depends on the person, but I know a lot of folks in clinical trials. I think most feel if it can help find a cure, then they are all for it! But some folks can be more private and might not want to share information. They may also be hesitant to participate in a clinical trial because it’s still something ‘in testing.’ Everyone would love a guarantee that something will work and all will turn out okay. Unfortunately, with melanoma we know there is still so much to learn!
How can a group like Cancer Commons communicate the importance of sharing data?
I think that a group like Cancer Commons can help share information about trials, help explainwhy trials are important, and how they can help. It also helps for a patient to hear stories from other patients going through a trial. Any way to get the data out about the trial is helpful. I’m always surprised at how many patients don’t even know that a clinical trial is an option. Mainly because, depending on where their patients are being treated, not all doctors are up-to-speed on all available options/trials. Or maybe they don’t want their patients to go someplace else.
Erin with Sister and Niece
Erin (left) with sister and niece

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1 comments

  1. Erin what a beautifully written summary of your amazing journey.
    (I've been thinkin' of you too girl!)
    Hugs
    Rose

    ReplyDelete