Patients Answer Common Immunotherapy Questions

I was surprised about the cost of the trial (see next response).

The other item is how well Seattle Cancer Care Alliance treats their patients. They treat you with so much respect and are sensitive to all that you are going through. For example, they do not minimize even the smallest things, like a needle sticking.

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.

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? 

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.

As with most patients, the initial diagnosis makes you ask "Why?"

I have heard a lot of bad stories from others going through various cancer journeys, but my journey was not bad at all in relationship to side effects. Like all cancer patients, the journey is not inexpensive and will put a strain on family finances and family time.

To some extent, that I survived! But also, I feel so strongly about being firmly rooted, that it couldn’t have happened any other way. I just have to make the absolute best of what I’ve got and do whatever I can to help more people have positive outcome experiences like I have been gifted. I really feel I have been gifted with something sacred that needs to be shared. 

I carry my doctors and healthcare professionals, all the medical researchers, in my heart wherever I go, just like I keep my ancestors with me. I know I didn’t get this far on my own, I am still here so that I can help others, share my experience. This experience has enriched some of what I feel my purpose is and I take that seriously.

Yessssss. It has restored my hope that we can win this battle against cancer. Plus, getting these inspirational stories out there help others to fight their disease.

Probably the most significant surprise is how people react. There are some whom you expect to be there every step of the way for you who are incapable of dealing with cancer and treatments. And there are others who show up out of virtually nowhere who really get it and are there for you.

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.

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. 

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 I can affect more lives and pay forward the enormous amount of support and opportunity I was given.

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. 

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.

The response that I had to immunotherapy is amazing to me. My wife and I thank god every day that we are together. We've been been traveling. We've been on long trips to France and to the Middle East. I was able to walk and hike places. Other than the diabetes, it's kind of like magic for me so far.

I was astounded by the kindness and support of other patients, my medical team, and the entire staff at MD Anderson.

They all truly cared about me and gave me hope. It was through their dedication to research that I had a fighting chance to survive and they supported me wholeheartedly. Every time I went in for a procedure or a visit with the doctor, the MD Anderson staff made me feel like I was the most important person to them. No one ever looked at a watch and hurried away. I was the focus.

When I was originally diagnosed with Stage IV metastatic bladder cancer the odds were not in my favor. I was told individuals with the similar cancer life expectancy is usually 0ne to two years. I am surprised every day with my cancer experience that I am still thriving and what I would call very well. I am still here four years later. I truly believe this is because of the advances in bladder cancer research and new treatments such as Immunotherapy.

This experience changed me as a person. My compassion and care for others has increased, along with my knowledge of the disease.

Yes. Aside from residual dizziness and imbalance from the brain surgeries, I generally feel quite good. I walk between 40-45 miles each week, and am trying to begin running again. I am living the best life I possibly can and training for my 26th NYC Marathon.

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.

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.

The biggest revelation is that we are living in a period of tremendous innovation and advancement, and as a result, there are treatments that did not exist even a few years ago that can significantly extend your life and provide quality of life despite a stage 4 diagnosis.

I have also learned that we, as cancer patients, need to actively advocate for ourselves to ensure that we receive the best treatment. Do not accept doctors telling you that there is nothing more that they can do.

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. 

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.

I was grateful to God, the scientists, researchers, all the doctors and nurses, as well as my big Irish family and friends for their support. I tried to keep a level head during the whole process because the one thing that you realize when you're diagnosed with cancer is you don't really have a choice. It's not like you walk into a car dealership and they ask, “Do you want the Toyota Corolla or the Lamborghini?” I kept as positive an attitude as I possibly could. To be honest, I didn't really dwell on it too much. I kind of just said, “Okay, what's next?”

Having cancer has changed my outlook on life. I don't sweat the small things, at all. If you can't really control it, then there is no point in worrying about it.

I am amazed at the progress in the medical and cancer fields, by giving new options for people who had no hope 20 years ago.

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.

I've done a lot of volunteer work in my adulthood, and I'm a social tango dancer. I never imagined I'd experience anything like what I went through.

Immunotherapy patients don't lose their hair. Some people in my life didn't take my cancer seriously because I didn't look like a cancer patient. That's when I came up with, "What does a cancer patient look like?" That was emotionally painful. Sometimes people said odd things. It took me time to realize they needed to say something, but didn’t know what to say.

I was blown away by the people who did show up for me. I’ll be forever grateful to them. I received more love than I've ever received in my life! My son and his girlfriend were only 20 when I was diagnosed. They showed up, grew up, and took me on. My son went from being my child to my savior and my rock. I will always be in awe of them. It brought us so much closer together.

I didn't realize a cancer patient could have more than one oncologist. I now have a team of three: a local oncologist, an oncologist who specializes in melanoma research, and a neuro-oncologist. My entire medical team works together under the guidance of my melanoma oncology specialist.

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. 

When I got diagnosed with stage 4 lung cancer, I was in a place where I was willing to try anything. Immunotherapy saved my life.

Immunotherapy gave me a second chance and I wanted it. I hadn't felt like that in a very long time. It was the immunotherapy, the way it reacted, and the confidence of the doctors and of course, my friends, that made me want to live again. It made me feel like, "you know what? You're still here."

Being told I was going to die was certainly an eye opener. It caused me to stop and assess what is true about life, death, and God. Dealing with cancer gave me a whole new perspective about what is important. I was surprised at the level of faith in God I was able to experience. I was surprised at my strength in dealing with the unknown and uncertainties.

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.  

Yes, I am surprised by how wonderful some people are and also how cruel other people can be.

It absolutely changed my life, my perception of priorities and most of all it was a paradigm to me and my family as I am the third generation with melanoma in my family and the first one to survive. “C” is not for "Cancer" anymore , “C” is for "Cure"!

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.

I didn’t realize that cancer would bring out the best in me. Cancer has taught me to be strong, empathetic, and understanding in so many ways. It has given me experiences that I would never have known about otherwise, as well as given me insights that I may not have received until years later in life. I am amazed every day that I live a happy and healthy life while managing a chronic illness thanks to advances in cancer treatment.

Too many people are affected and too many people when diagnosed stop living. They stop focusing on life.

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?"

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.

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.

=I have been deeply impressed by the vast order of magnitude devoted through philanthropy, medical research, and clinical translation to combat the various forms and stages of cancer. Conversely, the daunting complexity of the cancer microenvironment defines countless research challenges, with the attendant need to marshal the human and financial resources to conquer this dreadful disease.

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. 
 
 

Yes. I'm surprised that I am still alive.

 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.

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. 

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.

I am a private person. When I was first diagnosed with cancer, I told few people about my illness. I did not want to hear any negativity. An advanced stage lung cancer diagnosis in 2015 was usually considered terminal. I knew my case was inoperable, and the statistics were not good, but I knew I would survive. I didn't want to hear anyone's lung cancer experience that was not hopeful.

When I began immunotherapy, my reservations about sharing my illness vanished. I feel immunotherapy is a beneficial treatment and needs more exposure.

There is a stigma associated with cancer, especially lung cancer. Many people believe it is an automatic death sentence. I have become more vocal about patient advocacy and research since my success with this treatment.

The Cancer Research Institute has given advocates a great platform to promote immunotherapy. In sharing my story with others I have gained confidence that I didn't have before.

• The unsettling and unknown world of remission
• Going back to general practitioners and dealing with things like metabolic syndrome
• Being known forever after as that person who almost died from cancer
• Post-Traumatic Stress Disorder (PTSD)
• Ongoing fatigue
• Ongoing gratitude
• Learning slowly to accept never knowing when the shoe is going to drop, but also what the next new treatment might be

The patient perspective is extremely valuable. I had no idea that my experience, successfully completing a phase 1 clinical trial, would help build a completely different career path for me. The importance of self-advocacy and the role it played in obtaining my goal of getting into a clinical trial (after divorcing my original oncology team) gave me renewed confidence.

The treatment regimen was surprising. In chemo, you have four bags hung and it takes all day for the drugs to get in. In immunotherapy, they walked in with this little eight ounce bag and I thought you've got to be kidding me! We were in and out in about four hours. Also, I didn’t need to use the chemo port in my chest because the new immunotherapy drugs are not damaging to veins and arteries. 

The time it took to respond was also surprising after my previous experiences. We noticed visible changes in the tumors after four weeks. The drug eliminated all the tumors on the outside of my head in about six weeks.

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.)

It’s amazing how quickly cancer cells can be killed/eliminated using one’s own immune system with no or very low toxicity vs standard chemotherapy protocols. It’s astonishing how fast one rebounds physically after undergoing CAR T cell treatment. One week after my infusion, I did some local sightseeing. This is unheard of after standard chemotherapy protocols that leave many physical side effects/damage, often long lasting ones. Truly 1-2 months after receiving CAR T cell treatment, I felt that one would be able to resume their regular home/work routine. Recovery is so quick and given my own personal experience, I would do it over and over again if I could vs standard chemotherapy protocols. There is a dramatic difference between standard chemo trtmts & immunotherapy. Immunotherapy offers “Hope” for so many of us patients that have exhausted all options. It's giving many the gift of time!

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.