Yesterday I had the pleasure of interviewing Addie Vroom, a Senior Community Relationship Manager at the Pancreatic Cancer Action Network (PanCAN). She shared some amazing information & resources for the at-risk community. Plus tips on how to get through this with a positive attitude, the best way to get help if you or someone you know is dealing with pancreatic cancer or might be worried they have it, and ways to help the cause virtually!
Feel free to watch the video or read the transcribed interview below to learn more.
Revive Jewelry: What is PanCAN & what is their mission?
Addie Vroom: The Pancreatic Cancer Action Network is dedicated to fighting the world’s toughest cancer, pancreatic cancer. Which is now the 3rd leading cause of cancer related deaths in the US. It’s a really tough cancer to fight.
I’ve been working at the organization for about 5 years and I’ve seen a lot of incredible work happen. We fight the disease on all 4 fronts. We fight with our advocacy work, with our patient services, our science and research department. Also our community outreach and our fundraising & education programs.
RJ: Can you tell us a little bit about some of the things you’ve accomplished?
AV: In 2020 we really have a lot of things to celebrate. One of them being that the survival rate finally got to the double digits. We are at a 10% five year survival rate- it’s big. When I started [with the organization] 5 years ago, the five year survival rate was at 6%. So just in 5 years to see that type of growth, I get chills just thinking about it. It’s pretty fast in the world of cancer. All of our volunteers and all of our change makers, like all of you, that’s why this has happened. So that was a huge one for us.
Then, our Know Your Tumor program is a somewhat new program. It’s been around for a couple years. But, it’s really a molecular profiling program and so patients that call in and talk about the Know Your Tumor program, they would just need to get a sample of a biopsy of their tumor and then we would profile it through an outside company. Then there’s a report that comes back to the doctors, patient and PanCAN. Everyone works together to find out if there are certain mutations in the tumor that maybe could be treated in a different way. Maybe there’s a different drug for breast cancer or something that has been reacting to that type of mutation. So, instead of treating pancreatic cancer all as one disease, it’s really looking deep into exactly the make up of that tumor to make sure you’re getting the best treatment.
The exciting part is that at the beginning of the year, there was an article published. When you publish a paper in the science world and in the cancer world it’s a really big deal, it’s really meaningful. So, our paper was about the little over 1000 patients that were in this program and 26% of those patients did have some type of actionable mutation. Which is a lot & really important to see that high percentage- 26% they did find something they really could work on. And then it’s about matching the right treatment for that. For those that did have a treatment that was matched, they did have a 1 year additional life span added on just by becoming a part of that program and matching up with a different type of treatment that they would’ve never known about before. I’ve been so passionate about this program for a while, so that one was huge & really stuck with me.
And there’s so many more. I’ll go briefly over them. We have these amazing volunteers that march on capitol hill in the summer and just paint Washington DC purple. Our advocacy program is really unlike any other. And, we were able to, for the first time ever, secure an actual dedicated pancreatic cancer research program with the NCI (National Cancer Institute) funding, going just to pancreatic cancer. It’s always usually part of something else, maybe part of a deadliest cancers package, but for that to happen- it was 6 million dollars and we’re of course already shooting for more- but that was a huge accomplishment that we haven’t had since we started 20 years ago. It’s the volunteers and the staff and everyone with those big purple hearts reaching out to their local members to advocate for that.
The last one is pretty new for us. Precision Promise is a program that is our first clinical trial. So a lot of clinical trials are funded by drug companies and different companies, but we’re actually funding our own. It’s just sponsored by the Pancreatic Cancer Action Network. It’s been 5 or so long years in the making, but it’s great because it’s an adaptable clinical trial and it’s the first of its kind. So again, just crazy- these are the types of amazing things that all these donor dollars feed into.
The reason why the adaptable part is so important is because normally with clinical trials there’s a drug that they’re testing and they’re trying now- everyone gets the standard of care in clinical trials anyway, so clinical trials are not something to be scared of, they wouldn’t give people these drugs if they weren’t tested out first for a while- but if the drug doesn’t work then you’re out of the clinical trial & you move on and try a different one. Well, [Precision Promise] is really holistically looking at the patient and continuing to try different things. So if something doesn’t work, then working with the doctors and kind of changing that plan and seeing what else we can test out. So we’re going along with the journey of the patient in this clinical trial. It’s really special.
The exciting part is having finally launched it and we now have, as of this month, 3 sites that are starting to enroll patients. With this whole Covid thing, you might think, “oh is that gonna slow down?” But, we are still continuing. We still have all of our resources and, as it makes sense for patients, we’re continuing on with that program- it has not stopped.
RJ: How would somebody get involved with the clinical trial?
AV: For both of those programs- Know Your Tumor & Precision Promise- the first step is always calling our patient services department, called Patient Central. It’s a free service, one of the most important parts of PanCAN, and it’s for caregivers, a neighbor, a friend and certainly patients, who can call in to ask about it and get started that way. There’s just a lot of questions and making sure it’s the right match. We want to make sure to educate everyone who is interested so they feel comfortable jumping in to those programs.
We have a clinical trial search as well. On our website, pancan.org, there is a clinical trial search that you can do at home, I know we’re looking for more at home resources, so just starting that journey and looking into clinical trials in general. We have the biggest database of clinical trials for pancreatic cancer. We also have an arm of that website if you are a healthcare professional- so it’s a little bit of a different search and different language so we made sure to have both of those available. That’s been about 2 years that we were able to put that up on our website and give people the opportunity to kind of start looking there.
But just calling or emailing, talking to one of our Patient Central associates is really gonna start you on that journey to give you all that information. PatientCentral@pancan.org, or call 877-2PANCAN
RJ: What advice can you give to cancer patients, pancreatic cancer patients and survivors, or at-risk people during this time?
AZ: We had a great webinar series that’s recorded called, “Navigating Pancreatic Cancer During Covid 19.” So, I picked up a lot of tips from that- I’m not a healthcare professional- I work really closely with our grassroots community outreach program- but I did pick up a few things and you can go back and watch that on our website. All of our educational webinars are free to join are on pancan.org under the Facing Pancreatic Cancer tab and then there’s educational webinars, is how you’ll find them.
I wrote down a couple notes that I picked up from this webinar in general. We have so many resources that I’ll talk about later, but I think recovering from surgery is a big piece. If you are a patient that is recovering from surgery, it’s more likely that you’re going to be more at-risk. Obviously, your immune system is a little more sensitive, so if that’s the case, it’s about communication- over communicating and asking questions to your healthcare team. Making sure that your caregivers and the people that you’re living with are really aware of what to do and to make sure you’re in a safe environment where things are clean and that you’re just staying away from people. I know that’s really hard but luckily with technology right now, it’s important to connect and not be shy about trying new things, and with FaceTime- being able to see someone face to face like we’re doing right now, is a nice experience compared to maybe just on the phone. Phone calls work too. Certainly staying away from people that maybe traveling a lot or that are going out to the grocery store a lot. I think this kind of goes more toward caregivers, but we have a whole news article that we published with tips for caregivers and things to consider. It’s a little bit of a different experience when you have that heavy burden on your shoulders and really want to be safe and you kind of need to take care of yourself first.
A lot of pancreatic cancer patients have diabetes, and if you have diabetes you are a little bit more susceptible and at-risk for Covid as well. So just making sure that you keep that under control and really pay attention to that as people do anyway- but it’s just a point to make that in our pancreatic cancer community that’s something as well.
I also wrote down, they had talked about check ups and treatments. People ask, “do I delay surgery,” or, “do I delay my check ups and my treatments?” and honestly, it’s that one on one relationship with your health care professional and the journey. So I’d say don’t assume- please reach out, make sure that someone calls you back. Ask. If you don’t have cancer right now, you’re a survivor and at the moment you are cancer free but you have your 3 month check ups, they might recommend that you could wait, but it really depends on where you are in the journey. The healthcare professionals are there to help you and they care and they’ll make sure that they’re doing the right thing and not prolonging things if it’s really important that you go.
The last thing, this goes for caregivers and pancreatic cancer patients too- at this time my recommendation is self-care. Certainly not panicking. A huge piece of that webinar was we’re gonna get through this, it’s ok and take a deep breath. There’s always risks involved in things, but you can just make the extra effort and your caregivers can too, to just isolate yourself and be safe and healthy. And then while you’re in that space, while you’re by yourself, be eating healthy, do some exercise and get the blood flowing. Try to stay happy and engaged in something- some type of hobby you have or some breathing exercises, or meditation or some type of yoga and stretching. It’s just important not to forget to just love on yourself a little bit.
RJ: Are there any special precautions for cancer patients & caregivers to take?
AV: It’s not much different than things that we should be doing already and I think again, it’s just if you’ve recently had surgery or if you’re undergoing a really intense chemo treatment, just be extra careful with trying to stay isolated. And again, understand who you’re surrounding yourself with. Now is the time more than ever to rely on our neighbors in a different way, we can’t really see them in person, but there’s so many great services right now, like delivery services and asking a neighbor or someone who is close with your survivor to just give them a call, or asking your neighbor if they’re going out to get groceries, would they mind just picking up a couple things for you so that you’re not exposing yourself as a caregiver or survivor out there if that’s convenient. So just don’t forget to ask about that.
But I think as far as risk goes it just, step 1- don’t assume and talk to your healthcare professional and see what advice they have for you in your specific situation. Of course, you can contact Patient Central and ask those questions. We also have really great resources on questions to ask your healthcare professional. I think that’s an amazing resource to have when this is new to people and we want to ask the right questions. That’s what we are here for is that free education and having that one on one support with one of our patient central associates. When you call or when you’re emailing with someone, you’re going to be emailing with the same person, you really develop that relationship. You have one person the whole time. You don’t have to re-explain things and they’ll be with you on your journey so you have lots of support in this community.
These phone calls are completely private and they’re just how you want them to be, there’s not like a list of things that patient central associates ask you or grill you about. It’s just how are you doing, what would you like to know today, and how can we help you? So it’s just really based on your particular needs.
RJ: Do you have some resources or recommendations for the at-risk community?
AV: I would say we’re constantly updating our website with new things as it relates to Covid 19 and pancreatic cancer patients and caregivers. We have quite a lot of resources. I was just on a meeting about an hour ago from one of our patient associate leadership members and they were saying they’re collecting things constantly and always from the right trustworthy outlets like CDC, etc. Also, from our specialists and our surgeons that are in the pancreatic cancer world, so that we can give the right information to this particular community.
They were also talking about how if you call patient central and you live in a certain area, we have been trying to collect many resources locally. There are new things that have been opened up because of Covid and we’re trying to keep track of that so if you call in and you’re just wondering, “what local resources should I look for?” That’s something that a Patient Central associate could talk to you about. So, maybe there are a couple hotlines that are new and available that can tell you locally & keep you updated about the social distancing rules. Or maybe there are some food kitchens for cancer patients that opened up and your neighbor can go pick up something for you. So we have local resources, and we continue to grow that everyday.
Also, we have lots of information and tips on symptoms and what you should do; stay away from people, tell your healthcare professional if you’re going to be going in for surgery or treatment but you’re starting to feel symptoms, please call first, so they can be prepared and give you the right advice.
Precautions and tips for prevention which we kind of already mentioned- just social distancing at this time, but put your energy into healthy things. And then, also the questions to ask your healthcare team- we always have that available but we have an updated version to add on the questions related to Covid that you would need to have. And I mentioned those webinars- the next one is on May 8th- which are always recorded so if you miss it, you can watch later. But I think that series “Navigating Pancreatic Cancer Through Covid 19” is a really great resource. It’s usually like a panel discussion so it’ll have our different specialists and surgeons from across the country giving really great, timely advice. We want to make sure that we’re constantly updating this community.
And we talked about patient central. Again, I think that’s gonna be everyone’s best resource and that one on one support so you can feel comfortable asking any questions you have.
RJ: How can I make a difference if I am interested in helping out this cause?
AV: I think number one during this time it’s important to remember for yourself, even if you don’t have pancreatic cancer, is to stay home and do social distancing because that really is helping the cancer patients stay safer, the caregivers that you see at the grocery store stay safer, our surgeons and our nurses and our healthcare professionals- everyone who is out there that doesn’t really have a choice right now- if you can do your part, that’s number 1.
And I think also, and I know you didn’t tell me to say this, but I think supporting businesses like yours, Revive Jewelry. Because all the things that talked about wouldn’t be possible without donations and supporting businesses like yours that continue to support other causes as well. Like you said you have an audience that hopefully some of these tips will help them as well. All the causes that you support are really important. So I think that’s a really great way and a fun way to kind of treat yourself but help others by supporting your line. And you have a pancreatic cancer line which is just beautiful, inspired by the cell images of pancreatic cancer and I just love all of it. A couple of them are purple which is our color so definitely people should check that out.
If you hear of someone who has pancreatic cancer just try to remember that we have our patient services and patient central associates. It’s all free information, it’s all timely educational information. That’s what we’re here for; to help people with the their pancreatic cancer journey. So, you can just head to pancan.org, hopefully it’s easy enough to remember, but just spreading the word about how we’re there for people is a huge help.
And we’re actually doing our fundraising events, that I normally work on, virtual now. So, they’re called Purple Stride and they’re 5k walks and runs to raise awareness for pancreatic cancer. We have about 19 of them coming up across the country in the spring time that are turned virtual.
We just had ours in Miami a couple weeks ago and so it’s just a fun new way to get creative and see how we can be supporting this community virtually. So if you’re local, we have our Los Angeles Purple Stride coming up on May 2nd. And you can look it up through PurpleStride.org and that’s gonna be where all our Purple Stride events live. And even just sharing or wearing purple at any time of the day on May 2nd, snapping a quick picture, talking a walk and saying you support pancreatic cancer, doing a #purplestride is the hashtag to use so we can see all the wonderful purple that’s going on that day, so even just supporting that.
And of course there’s lots of fundraising events you can do or facebook fundraisers and every dollar or donation counts. But I think really now just to show that support online virtually is huge because you never know. Just taking a few minutes out of your day to do that to just support, not anything to do with money, who that’s gonna inspire. Maybe there’s someone in your life that you didn’t know was affected by the disease and you can give them the information to help them.
RJ: What is virtual Purple Stride like?
AV: We have different things going because normally we’d have an opening ceremony, so now some of these things are sort of pre-recorded or recorded live. Some are survivors that are talking about their story, or people that are talking and educating people more about PanCAN or talking about some fun local things that are going on, some people have been recording the national anthem. So really connecting on facebook and kind of seeing what’s going on. You can find all of our local groups that are on facebook under the groups section and then you can join those groups. It’s open for everyone to join. And then from there that’s kind of where all the activity has been going on, people having been doing really creative things.
In Miami one of my volunteers dressed up as a mermaid and had everything decked out in purple. She was by her pool and she got her family to get involved and hold up signs and did a facebook fundraiser. Just showing that activity virtually was really cool.
We made phone calls and connected with people on the day, that was really important. We had one woman who did a 30 minute walk, kind of similar to what she would do, with her dog dressed up with her daughter and a wig. That sort of looks silly when you’re walking on the street and maybe your neighbors are seeing you. So one of her neighbors said, “what are you doing?” And she told her she was striding for her late husband who passed from pancreatic cancer and she raises a bunch of money. Her neighbor had no idea that she was involved in that and said, “I can’t believe that because my dad just got diagnosed with pancreatic cancer.” So she was able to, while she was on her walk striding, educate someone about the disease. So it’s just really cool to see all the stories and creative ways people are just kind of lighting the town purple on instagram, facebook and twitter on those days that we’re doing the virtual purple stride.
PanCAN website: pancan.org
Patient Central: https://www.pancan.org/facing-pancreatic-cancer/patient-services/, PatientCentral@pancan.org, or call 877-2PANCAN
“Navigating Pancreatic Cancer Through Covid 19” Webinar: https://www.pancan.org/facing-pancreatic-cancer/patient-services/
Purple Stride: purplestride.org
Pin it for Later
***All content on this website, including medical opinions and any other health-related information, is for informational purposes only and should not be considered to be a specific diagnosis or treatment plan for any individual situation. Use of this site and the information contained herein does not create a doctor-patient relationship. Always seek the direct advice of your own doctor in connection with any questions or issues you may have regarding your own health or the health of others.***
Leave a comment