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Patients Answer Common Immunotherapy Questions

Are there things that surprise you about the cancer experience?

Patients provide a vital perspective on the experience of cancer diagnosis, the consideration of treatment options, side effects, immunotherapy, and clinical trials. Review a collection of patient responses from our Immunocommunity below for a greater understanding of each individual's experience. 

Ann S

You never know what is being worked on and will be approved in time for you. Don’t give up hope until you have to. (I’m not one to tell somebody to never give up because there comes a time when many cancer patients must accept the inevitable.)

Daniel M

You read a lot about cancer, and you see it, but you think it’s never going to happen to you. Then it did. I can remember the exact day I was diagnosed: May 17, 2012. I've never forgotten that. I was terribly lucky that when I got diagnosed I had that window to get in on the treatment. If it was a couple of months later, I wouldn't have gotten in. It's a marvelous, miraculous story. I thank my family, friends, and the wider Christian community for their love, prayers, and moral support they gave me through this journey. I stand in awe of the researchers who developed cancer immunology, which has given hope to all cancer sufferers worldwide. Finally, I express my deep gratitude to Professor Cebon and his team at the Austin Hospital. I am alive because of him.

Barbara L

Well, it makes everything seem much more precious. Of course, at the beginning, I hated it and I said “Why me?” But it hasn’t really changed my life in any way. I just look at everything one day at a time. I don’t let it get me down.

Jesse C

When you’re healthy, you hear these dramatic stories about cancer changing people’s lives. Well that’s true in my case. It has made me a calmer person as I’ve learned not to worry anymore. It has made me live one day at a time, as life becomes a bunch of moments. This experience has made me enjoy the wind and the birds chirping. You'll never believe that unless you're in this situation.

Kevin L

If it weren't for all the bad parts of cancer, everybody would really benefit from it. I hope I can use that perspective in the future— like not getting angry about things, letting things go, being able to realize what's important. Sometimes I find myself going back to my normal mode of operation, getting frustrated about commuting, etc., but then I remember, "Wait, you almost died once. What are you worried about?"

Jeannine W

Challenges can become opportunities. Through some ups and downs at the beginning of my cancer journey, parts of me started to gravitate to my meaning and purpose. I started doing volunteer work supporting brain tumor patients, and fundraising for brain tumor nonprofits. I lobbied Congress during Brain Tumor Awareness Month, and spoke in front of the U.S. Capitol in Washington, DC, regarding brain tumors.
 
Less than two years after my first surgery, I left my position as a legislative assistant for a Congressman from New Jersey to more expansively join the cancer arena. Since then, I’ve volunteered, worked, and consulted for cancer nonprofits, the National Cancer Institute, Food and Drug Administration, NIH National Center for Complementary and Alternative Medicine, hospitals, doctors, providers, other businesses, cancer patients, and caregivers.

Karen K

My struggle now is that I was very active before cancer, with teaching and volunteering and exercise. I miss the teaching. My hobbies—I always walked, golfed, snowshoed, anything outdoors. That has not stopped. But my body is not the way it was before cancer. I get sick more easily for one thing, and I get more tired.

I’m still learning how far to push myself. I have to say to myself, “Okay, wait a minute, I just golfed 18 holes, and now friends want to go out to dinner. Should I do both?” I just got over a cold and I wanted to go for a hike and my husband said, “Should you be doing that?” I tend to push myself when I shouldn’t.

Thèrése B

I just would encourage patients with advanced melanoma not to give up and to recognize that we're riding the wavefront of new, remarkable therapies. And they shouldn’t give up. They should work with people, talk to other patients, get onto the websites where people list who they've worked with, talk to their doctors. But don't give up because new therapies are opening up that actually are proving to be very effective. 

Nicole B

At the end of the day, it doesn’t really matter what type of cancer you have; connecting with someone who gets it, especially your best friend, is always on another level than with anyone else. We always joke that I was jealous of the attention she was getting so I had to go and follow in her foot steps and get cancer, too. It’s a joke people without cancer don’t get, and get uncomfortable when I say it…but Christina and I always say, cancer can be funny! Laughter is the best medicine, no? 

Emily H

So, lessons learned this time around? I’m still putting them together, but mostly it’s about how there isn’t one cancer experience. Everyone is different. My husband Matt’s hardest moments were not the same as my hardest moments. Cancer in 2009 is different from cancer in 2012, which is also different from cancer in 2015.

I learned that things keep moving forward.

Donna F

I have two dogs. One is an American Eskimo, named Cotton. She is very opinionated, and very smart. I also have a Sheltie named Barney. They’re so much fun. And I’ve met some incredible people by doing agility. Before, I was one of those people who went to work, and came home; went to work, came home. I really didn’t have many outside interests. But agility changed that. All of a sudden I was hardly ever at home. I’m not an athlete at all, but it is one fun sport.

Donald (Dee) R

I like to tell people that cancer is not the end of the world. Sadly, it can be for some, but there are so many people that work every day on research to help develop a cure. That's the main thing I want to convey—to give other people courage that you can get through it. Not everybody does, but that’s why people need to contribute dollars to help all the people who are doing research to save lives. It's really making a difference. I always say the real measure of a person's life is that they can make a difference. That's pretty special. 

Joseph R

Well, it’s like I got a second chance at life. Before I got sick, I had just completed my post-Master’s hours in clinical psychology and was working towards becoming a licensed marriage and family therapist. I worked really hard to get all these hours, and I was doing it on top of working full-time as an accountant and a teacher. And then I got very sick, and basically I lost all the hours that I invested. But then I got the immunotherapy and I got better, and I had to decide in my late 40s, okay, what am I going to do with my life?
 
In 2010, I registered for school and started a doctoral program in psychology. I’ll be starting my last year in the program this fall. I am within reach of obtaining a lifelong goal of earning a doctoral degree and eventually becoming a licensed clinical psychologist. That’s something I never could have imagined 12 years ago when I was so sick and fighting for my life.

Dave H

Being diagnosed with cancer, that was a big shock and it changed our whole family around. But knowing this treatment is helping me along and is more or less curing me, I think we’re doing quite well, considering.

 

Joseph M

My patience has gotten so much better. My understanding of people has gotten so much better. I used to read my Bible occasionally, but now my prayer habits have gotten better. I’ve got to be at work at 6:30, and I’ve developed a regimen now where I get up at 5:00. I pray and read my Bible ’til about 5:30. I go to work. I come home on Mondays, Wednesdays, and Fridays, and I start hitting the track. I’m up to about two miles. I’ve got my exercise plan together. I’ve got my plan with God together. I tell my wife I love her every day. I’ve got an eight-year-old son, and he’s pretty rambunctious. He likes to talk about stuff for hours, and I used to give him a good hour of sitting down and talking, but after that hour, he burnt me out. But I’m telling you, the way the cancer has changed me now, if he wanted to sit there and talk about something for five hours, I could do it and it’s not even a struggle.

The Lord put it in my heart to share this experience with other people so I could get some prayer warriors on board for me. It was an eye-opener because black people don’t check their PSA levels like they should. That’s why the prostate cancer rate is so high among them. So I took it on myself to get the word out, to let people know that this is real, and anybody could get it. 

Joanne T

To be able to carry on with life when you have two children is a massive bonus. I have a lot of energy and it doesn’t cause a problem with that either. We need more therapies like these so patients can continue living well and living a long life.
 
No one would know if I walked down the street that I have an incurable disease. Which is good, but also has a downside that people don’t understand the seriousness of secondary/metastatic breast cancer. I think that is where people need educating. Just because you can’t see a disease or its effects doesn’t mean it’s any less deadly. 
 
 

TJ S

Being a public success story has given me the chance to be part of presentations on immunotherapy, clinical trial participation, and different melanoma platforms. They have been incredibly rewarding experiences, knowing I am reaching both other patients and the scientists, clinicians, and pharmaceutical professionals who work to cure them  --  to cure us. If one doctor learns of a new medicine, if one patient gets the right treatment, if one researcher finds inspiration to work for a new or better therapy, then all the time spent writing, speaking, and advocating is worth it. I hope that, as I continue to recover, I can affect more lives and pay forward the enormous amount of support and opportunity I was given.

Isadore W

It brought my family closer. My first thought when was I diagnosed with prostate cancer was, “Am I going to see my two sons graduate from high school?” They were in grade school at the time. Once they graduated from high school, I thought, “Am I going to see them graduate from college?” Both of them have now graduated from college and both of them have careers.

So that was a goal of mine, to make sure I'm around to see my two sons graduate from high school, from college, and enter careers. When you're dealing with prostate cancer or any type of cancer, you have to have a support system with you, including your church, your hospital, your family, and a support group. That makes it much easier.  

Henrik Vad M

Keep on working. Be open and honest with colleagues and tell them what you’re up against. If you play with open cards, you will get support. That's what I learned. I know a lot of people who do not speak out about cancer, particularly in a job situation. But I say, since one-third of all of us living on this planet will be hit by cancer, I think we should have an open and honest approach.

Dennis B

 My advice would be to talk it through with your doctors and people who care for you. If you are a spiritual person, I would also suggest you bring the situation to God. I would add that you already know the outcome of what non-treatment will be. It'll be that the leukemia is eventually going to take its course. By participating in a clinical trial you may possibly not only reap benefits for yourself but for other people and for science.

Deborah W

In my blog, I say I don’t have a road map for cancer. I’m the first in my family to develop a malignant one, so I didn’t know going in how I might be expected to act, and I’ve been learning that others have their own expectations of how cancer goes, and how the cancer patient is.

For now, I continue to take the targeted therapy. Sometimes my journey has felt like Alice in Wonderland meets science fiction.

The science around treatment for metastatic melanoma is exploding and has allowed me to lead a pretty normal life.

Stephen E

In all the ways cancer has affected me, one way stands out the most. Cancer taught me how to really love myself. Before, I liked who I was. I enjoyed myself and my life. But now I can honestly say I am deeply in love with who I am. And I have cancer to thank for that.

As for the future, I just want to live life fully. Whatever that means. I don't need to climb Mt. Everest or hike across the United States. I just want to live more in the "now." I want to be around the people I love. I want to be more honest with myself and others. I want to enjoy what I do for a living and just be thankful that I'm able to do anything.

But most of all, I want the gift of immunotherapy to be accessible to everyone. Being on my trial has improved my life a million times over, but it hurts when I see my friends in pain from cancer. I want my gift to be everyone else's gift too. I hope that by participating in a trial, I can help make that a reality.

Denise Z

Overall, I think I've been successful at staying pretty positive. There are, of course, bad days because realistically you have to sometimes think about what could be the inevitable outcome when you're diagnosed with a late-stage cancer. But I do try sometimes to get through days without thinking about that.
 
It's been a part of our life for seven years. So it's strange, but it's kind of just there. My kids have always grown up with me having cancer. I go and I get treated. But we live a normal life. They go to sports; we have dinner every night. Thankfully I haven't been too outwardly ill, which makes it easier for them to deal with.
 
And I have had the support of family, my husband. My mom was able to travel with me to Penn, which is a huge help, so he can stay home with the children and go to work and kind of keep things as normal as possible at home. Then I have friends and other family that pitch in where they can. And in terms of this trial, when you get to your fourth recurrence, it feels pretty grim. So if you have something that is new and has these, thus far, promising results, it renews your hope a little bit.

Sharon B

After all my treatments were said and done, I couldn’t shake the feeling that the cancer was going to come back, so I continued with my poor eating habits. I knew that in order to lose the weight it was going to take time and effort. I didn’t think I had either. That was until I had my kids. They deserved a healthy mom. A mom that could run and play. But most importantly, one that would live long enough to see them grow up. So I changed. It’s as simple as that. I completely changed what I ate, and I started to exercise. Over the course of a year and a half, I lost over 160 lbs. I’m now a personal trainer/fitness instructor and strive to help others in their health and fitness journeys. 

Michelle B

But really, my cancer diagnosis hasn't changed the core of who I am, though it certainly has made me mature quickly. I take the time to appreciate all the good things in life. My family is supportive in every way possible, and I have a handful of good friends that have stuck around. The most unexpected source of support since my cancer diagnosis has been my coworkers – they organize rides to appointments for me, give gifts, and provide emotional support. I feel truly fortunate to have so many wonderful people in my life.

Luc V

I'm really hoping that I can beat the odds. To be very, very honest I have never been, let's say, mainstream. Sometimes it was extraordinarily on the bad side and sometimes it was extraordinarily on the good side, but my life has never been mediocre. I'm hoping that I can, even though the odds are very bad against it, be one of these miraculous survivors. That's my ambition.
 
There’s a saying in English: swing hard in case you hit. That's my motto as well. I'm going to try to live life to the fullest with my family and all the sports I'm doing. And I'm going to swing hard and who knows, maybe I hit it and then it will be out of the ballpark. That's the way I live, right now.

Paul M

I wouldn't wish this cancer on my worst enemy. But I wouldn't trade it, either. The mindset that I have now is like night and day. I have no more fear. We need to all know that there is a plan for each of us on this journey. When we come through victorious we must pick up the mantel and help someone else.

So many people did that for me. My wife Linda…I wouldn’t be here if not for what she does daily. My son Terrance literally saved my life, and my daughter Patrice keeps me going with constant encouragement. I also want it known that the Lord is my foundation, and He has been guiding me throughout this journey.

Pam G

I just thought to myself, you know, I’m not going to die. I don't care how bad it looks. I decided I was never going to give up. I would just keep fighting and trying my very best.

Two things really kept me going. One was my trust in God; I realized I had to put things in somebody else’s hands. That, and the love and the support from our family. We have a huge support network of people at our church. I mean, everybody saw me when I was in really bad shape. They all say this is a miracle. 

Jon D

I think the idea of an immunological response to cancer is the holy grail of cancer research. If the PD1 process by which cancers disguise themselves as "good guys" can be removed by an "anti-PD1 or PDL1", then white blood cells and T-cells can be set loose in the body to destroy the cancer, a cure would be possible. It seems we're close to that. A scourge on humanity since the time of the australopithecines may have found its match!

*Immunotherapy results may vary from patient to patient.

Patient education information supported by a charitable donation from Bristol-Myers Squibb Company.
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