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Patients Answer Common Immunotherapy Questions

What would you want another patient to know about immunotherapy or about participating in a clinical trial?

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. 

Karen K

The other component which is unique is I did not go through a bone marrow transplant after treatment; I think almost 100% of people do. I had a donor set up. We had everything ready to go and Dave and I talked to the doctor and said, “We’re willing to gamble if you are; why can’t this be the cure? Why can’t just the CAR T cell therapy work?” We all decided that we would give it a shot and see how this works without the bone marrow transplant. So far, it’s worked. I’m still cancer-free over a year later.
 

TJ S

I want to communicate to my fellow patients how important it is to be your own advocate, and take your health into your hands. Research the best options, and make an informed decision on what treatment is best for you. 
 
I would also encourage all patients to look into clinical trials. It may not be the best choice for everyone, but it is important to know that cancer patients get at least the current standard of care, and have the potential to get new life saving medicines more quickly.
 
Above all else, stay strong. You are not in this alone.

Joanne T

I hope my web site can help other patients making tough decisions at the most upsetting and crucial time of their life. It’s the most traumatic experience that anyone can face and now I’m living with it, but so glad I’m still here to tell my story and be an advocate for primary and secondary breast cancer.
 

Denise Z

Absolutely. Aside from that week where you're not feeling well, it's a very benign treatment. The most intrusive part for me is the travel. That disrupts me the most, but you don't have the typical nausea. You don't have hair loss. There's a little bit of fatigue, perhaps, but nothing debilitating. And then, of course, there are the positive results.

Mary Elizabeth W

There’s no question in my mind that immunotherapy saved my life. I had stage 4, my cancer was galloping through my body at a rapid clip and the trial that I was on stopped it and reversed the course in three months. When I tell people about that, their minds are blown. My mind is still blown by what happened with me.

I had a friend in my support group say to me, “My doctor said there’s nothing they can do.” And I said to him, “Please make some phone calls and see if you can get yourself in a trial.” And he made some calls and he got into a trial and now his tumors are shrinking. That’s what you get when you talk to people. That’s what you find out.
 
What I tell everyone is: don’t Google “worst case scenarios” because you’re not going to get good news. And be really careful of the information you let yourself get. Be sure that you advocate for yourself and don’t just necessarily take the first bit of information you get from the doctor down at your hospital. Find out what’s out there.

Dave H

My advice would be: do it. I mean, what I have experienced in being able to see the cancer going away, I would highly recommend this procedure being done.

Donna F

Opdivo has let me live my life exactly how I want to. People talk about a “new normal” after cancer, but I don’t have a new normal. I’m still living my old normal.

Jon D

There's an expression: "Hope for everything. Expect nothing." That's what I do. Life isn't always fair; we just have to make the best of what we're given.
 

Carley R

Oh, absolutely. It's not the right choice for everybody—it depends on your type of cancer, what stage you're at, how your disease reacts to drugs. But I would definitely encourage people who fall into guidelines of the trial to move towards immunotherapy. 

Dax B

It’s definitely worth trying, if you can get on a trial—particularly because this drug has very few side effects. And I’ve always got the option of falling back on some of those other drugs that are approved, like BRAF inhibitors. So for me, it made complete sense.

 

Michael R

Always be focused on where you're going to get to, and you'll get there. The end goal for me was getting back to a normal life, and then trying to check out some things that I hadn't done before. Some of the things that we've done over the last four years, I think, “Wow, I may have never even considered doing some of those had I not been through all of this.”

Henrik Vad M

I have a simple answer: yes. Compared to the other treatments I've been through—and this is my eighth outbreak of cancer since 2007—I would recommend this treatment because you're not hospitalized, and the side effects are much less harsh. Furthermore, the reduction of the tumors is significant, much better than the previous treatments.

There's one comment I will add on, and that is this: you can make a choice. Do you control the cancer or does the cancer control you? That's actually a little bit brutal, and it’s different from person to person. My approach was to say: I have cancer, but I want to have a good life. I want to do what I want to do. And then if the cancer pops up again, then from there on I will try to do my best to survive it. Cancer is not only physical, but also mentally a terrible disease.

 

Sergei G

 I think that it's a fantastic approach. You have pretty much nothing to lose if you are in this particular situation. If somebody requires immediate treatment, it's a different story. But for people in a wait-and-watch stage, I think it's too good a chance to miss.
 
And the other thing is that Science magazine voted cancer immunotherapy the breakthrough of 2013. So it’s really coming into fruition. It's amazing how far the science has moved in the last 15 years.
 
With this trial, it's just the beginning of research so hopefully they will continue to learn. I hope it will help other people, too.

Joe B

Yes, I would certainly recommend it because, like I said, when you look at the science and the whole idea of building the immune system, it makes sense. We have to do everything we can to keep our immune system strong because of the fact that it is fighting. I would say anything that anybody can do to enhance the immune system, they should do.

Bob C

Well, everybody is different. I don’t know what everybody’s goal is. I don’t know how old they are. Like Dr. Herbst says, “This isn’t about a cure. It’s about treating cancer like diabetes.” You take your medicine, and you go on with your life. I have had to make zero lifestyle changes. Nothing. I feel great. I tell Dr. Herbst, I don’t even consider myself having cancer anymore, although I know I do.”

Ann S

My advice is to get a good doctor who is up on the latest, keep your appointments, stay on top of what is happening in the field of your type of cancer, try everything that is offered, and hope for the best. I never thought I’d not only be here today, but also be healthy. I am very grateful.   
 
When I was first diagnosed with metastatic breast cancer, my goal was to see my son graduate high school. I made that goal, and that was one of the most beautiful days of my life.

Ariella C

I can’t overstate how lucky I am to have been in the exact right place, at the exact right time to get a spot on the nivolumab trial. The idea that this could change the standard of care for people with Hodgkin’s is so exciting to me. I hope that there can be a time when you simply go onto nivolumab, and just live your life.

That would be my wish for everyone. It’s just done so much for me. 

Diane A

I tell them how easy it was. Any time you do a trial, people get very upset about it because it's an unknown. They don't know what the repercussions or what the after-effects will be. I try to reassure them that it's not going to knock you out. I tell them how easy it is and what a gift you will give to your relatives down the road. 

Stephen E

People who know me know that I research the hell out of anything and everything. That's what got me to where I'm at now. I left my original oncologist because she was a general oncologist, and I wanted the best in the GI cancer world. Every cancer patient deserves the best, but they have to research and be their own advocate. Don't take "no" for an answer. Keep going, keep reading, keep asking questions.

Barbara L

Find other patients you can talk to. There's one girl that I met at the University of Pennsylvania, she's from Oregon and she and I keep in touch on the Internet. And we share stories and I think that’s really important. Just to talk to somebody who makes an effort. I would recommend that to anybody who is unfortunate enough to get sick. I mean, it's helped me, and I'm cancer-free.

Luc V

I would really encourage anybody to do this, if you see how good I am. I see a lot of people in the clinic getting chemo. They lose their hair, they look really pale and weak, and they have far fewer tumors than I have. And they get these bad chemo treatments, which is I think not a very smart tool. It kills everything, the chemo—both good cells and bad cells. I'm not an expert, but I think that immunotherapy is a far sharper tool than chemo. That’s also why I'm doing this TD 5 Boro Bike Tour for Cancer Research Institute, so that they can keep on supporting research.

Paul M

I'm an "encourager." That's the kind of person that I want to be. I love to sit down and talk to people about cancer, and help them get through it. But I want to do so much more. I want to be able to leave a legacy in doing something that will help people with cancer. That’s why we started STAND N the GAP Initiative. Our goal is to help cancer patients and caregivers with some of the more overlooked aspects of the experience, by helping with funding for things like cab rides, gas, meals, co-pays, and meds.

I hope that one day that we can find a cure for cancer. Immunotherapy makes me very hopeful that that can happen.

I also hope that, in part because of the work I do, people around this world will realize that they don’t have to fight this fight by themselves.

Jeannine W

I want to provide significant support and make major positive changes. My vision is for brain tumor patients to heal without suffering and live long lives. Along with my own personal experiences, I will never forget brain tumor patients—friends of mine and others I’ve met at hospitals—who were in pain, and I absolutely know that improved quality of life, enhanced survival, and cures are already occurring and much more is on the horizon.
 
I hope that more cancer patients learn about immunotherapy. Indeed, immunotherapy is a pioneering treatment already with FDA approval for some cancer types, as well as current clinical trials showing promising results.
 
In my quest for optimal health and healing, I knew I had to be proactive with research and engage with informed actions. I know I would not be here without receiving quality cancer treatments and clinical trials. New positive improvements—and even solutions—bring cancer patients into new directions to feel better and live longer. Now is the time. 

Jesse C

 Absolutely. 

Joseph M

If they offered me that research today, I’d do it again. Wouldn’t hesitate. Because, to be honest with you, I’m in better shape now than I was before it started. The research showed me a lot of things that I was already doing wrong. Like, I wasn’t eating properly, wasn’t exercising right. I am in excellent shape now—hardly any body fat.

*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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