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Patients Answer Common Immunotherapy Questions

How did you learn about immunotherapy and why did you decide to do it?

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. 

Joseph R

I had a home health care nurse who was coming in and keeping me hydrated and giving me medications. I was just about ready for a morphine drip. The nurse mentioned that she had another patient who was on a drug trial at UCLA with Dr. Ribas. She actually gave me his name and telephone number, and she said, “You should try and go there.” By that point, I was pretty much done with doctors and everything. I’d already bought a grave.

I remember going to see Dr. Ribas the day before Christmas Eve. The nurses did some tests and took my blood. Then they told me to come back the day after Christmas, and they would start me on an experimental drug trial. The first drug that they put me on didn’t work. I had an adverse reaction. So they tried another one right after the New Year, in 2004. By that time, CT scans and PET scans showed that the cancer had metastasized into stage 4. It was all throughout my entire body from the neck down.
 
By this time I had started to get external skin lesions—big brown and purple spots. I had one on my clavicle, one on my right arm, and several on my right leg. I showed them to Dr. Ribas, and he said, “Yeah, that’s not good.” So he decided to start me on the antiCTLA-4 (tremelimumab) trial right away.

Michelle B

I believe immunotherapy is my best chance for getting rid of my cancer. The first option for melanoma is surgery, which I had, but once it metastasized it had spread to too many places for that to work. I was told that if they tried it would turn my lungs into Swiss cheese... that may seem like a horrible thing to tell a patient, but I find it an apt and amusing comparison. Do all cancer patients end up with a slightly twisted sense of humor to survive? :)

My reading of current research and my doctors recommendations both supported trying immunotherapy first, so that's where I've focused my treatment. So far I have had interleukin-2, ipilimumab (Yervoy) combined with IL-21, ipilimumab combined with radiation, IL-15, TIL therapy (chemo, followed by a TIL infusion, followed by IL-2), and currently am taking MPDL3280A (PD-L1) combined with cobimetinib (MEK inhibitor).

The exciting thing is that immunotherapy offers the possibility of a long term remission. What would you be willing to do for a chance at fifty more years of life?

Melanoma has low response rates to chemotherapy, and with so many promising new immunotherapy or targeted therapy drugs coming out I actually never gave chemotherapy a second thought. In my mind, as someone in my twenties, I have so many more years to live if one of these treatments does make my cancer disappear for the long term. I want to try whatever may have a chance of making that happen.
 

Donald F

I was told the reason for the toxin treatment was to jump-start my immune system to fight the cancer. The treatment was almost daily. I had radiation treatment in the morning and then the toxin treatment was in the afternoon. Every day I would feel my shoulder, and I could notice a difference. I could feel the tumor shrinking.
 

Joe B

I came to immunotherapy because I knew enough about health and medicine to understand how important our own body is to defeating disease. The whole idea about being vaccinated for disease has always made sense to me. When I was dealing with prostate cancer and realized there were treatments designed to help boost the immune system so that it could detect the disease, I was taken by that whole concept.
 

Luc V

I’m not a doctor, but I am a scientist, and can read a scientific paper. So I started reading about immunotherapy and that's when I decided I would do this. If you only look at classical ways of treatment, 10 months is more or less what you get when you are diagnosed with stage 4 melanoma. And I'm now at month 7 since September [2013] so I'm still on the good side of this story.

Well, it's not scientific; the scientific thing I leave to the oncologists in the university. But on the side, I have the idea that your brain is capable of putting a lot of organic natural products in your body. I think my brain is a very good pharmacy for my body—in addition to what I am getting from Bristol Myers-Squibb.

Nicole B

I had 25 rounds of radiation. I lost the hair on the back of my head and hearing in my ear and had some pretty bad burns. It killed my ability to taste and made me super nauseous.

In April, I woke up with facial paralysis. The doctors figured it was Bell’s Palsy, but a full body scan found my brain tumor. They removed the tumor, and I underwent a course of targeted brain radiation.

Two months later, after severe nausea, I was back in the ER, and they told me I had a stomach ulcer and sent me on my way. After that did not resolve, they did a lower endoscopy and found a polyp. After removing it, I had severe cramps, so another surgeon (thinking they perforated my bowel) went in to correct it and found several large tumors in my small and large intestines. He did a small and large bowel resection removing 30cm of my intestines. Everything they removed came back positive for melanoma. Another scan revealed several smaller spots on my liver, other areas of my intestines, and stomach. After that, I began treatment with Opdivo right away.

Sergei G

For patients with low tumor burden, like me, the solution was to do nothing, just wait. And it's kind of disappointing. It really hurts psychologically—just watching the thing grow on your body is difficult.

I wanted to be in this trial because it's the best of many worlds. For one, it has almost no side effects compared to other types of treatments. Also, it potentially could be repeated. With traditional therapies, the effect weakens with time, so you can't really do the same type of sequence over and over again. With this one, it's possible. And at the very least, it doesn't preclude any other option. So you kind of get another weapon in your arsenal against this disease. I think it's a fantastic opportunity.

Joanne T

Nearly a year after the web site launch, I was diagnosed with secondary (metastatic) breast cancer. It was devastating. I completed 8 cycles of chemo and am currently in remission. In between chemo 4 and 5, I had a break from chemo and I completed a 60-mile bike charity ride for my hospital, The Christie.  I’m now on drugs to stop/delay the cancer from returning. One of them being Perjeta. It’s been and still is a hard struggle and of course the story won’t stop there.  I will continue to have treatment every 3 weeks forever.  Secondary breast cancer is incurable.
 
 

Joseph M

It was really a simple decision. They explained that it could possibly have advantages for me with the type of cancer I had. There was also the chance that this research would possibly help others down the line, maybe even my own kids.

Sharon B

When my oncologist, Dr. Jedd Wolchok, told me about a new type of therapy that was currently in the trial phases, it sounded like it could be the light at the end of the tunnel that we had been searching for.  I just said “Sign me up!” I didn’t need time to think about it. Nothing up until this point had worked.

I started receiving ipilimumab (Yervoy®), an immunotherapy that “takes the brakes off” the immune system. After four rounds of treatment, Dr. Wolchok told me that the drug was working. I was dumbstruck. I had become so used to the treatments failing, that I expected more of the same.  But this time, my tumors had shrunk by 60%. He said that the radiologist called up to make sure that he had the correct patient because he had never seen a response like this.

I have been in remission for eight years now.

 

Dennis B

The doctors told me that the choice before me was to either continue with the basic kind of chemotherapy they were treating me with, and that had worked for a while. But they told me that eventually the leukemia would take control. And then there was a possibility of a more aggressive treatment. Dr. Castro-Malaspina said there was one more doctor he wanted me to see at Sloan Kettering, because a new clinical trial had just opened up. 

He asked me to see a Dr. Renier Brentjens, who was involved in this study on targeted re-engineered T cell therapy.

Henrik Vad M

Springtime 2012, just shortly after my last treatment in Denmark, I went to Chile. I was head of a project down there to build a manufacturing facility worth roughly $200 million. I was looking for treatment alternatives and ended up getting in contact with Dr. Antoni Ribas at UCLA in California. I was living close by in Santiago, Chile, so I jumped on the plane to Los Angeles from Santiago. It was about a 14- to 15-hour flight.

Dr. Ribas told me that a new clinical trial of the drug MK-3475 [pembrolizumab] had just opened and asked me if I was open to joining the trial. I said that I was. I joined the MK-3475 protocol in October 2012.

Daniel M

They gave me booklets to read on melanoma, and what really worried me was that they had no real treatment out here. You could go on chemotherapy or radiation, but they were only about 5% effective. They had nothing else. But then this trial [with ipilimumab] came up, so I applied. The next thing I knew, a doctor from the Austin Hospital rang me up and said I was a good candidate for the trial. What they liked about me was the fact that, because I worked outside, I was pretty fit. I never smoked and didn't drink too much. I wasn't overweight, wasn’t on any medications. I think that's what won the day.

He explained to me that my immune system would kinda be revved up, and that this would allow my immune system to attack the tumors and destroy them. They said that I would have four infusions spread over three weekly intervals.

Dax B

I think it was around June or July 2013 when Dr. Long started talking about these new trials with PD-1. She mentioned there were a couple of trials that were starting around September. Luckily for me, there was a trial involving this anti-PD-1 drug, which I was able to get into.

My particular trial had three arms. One arm was the anti-PD-1 drug every three weeks, which I’m on. The second arm was the anti-PD-1 drug every two weeks. And the third arm of the trial was people who got ipilimumab, which obviously was the cutting-edge drug a couple of years ago and as such had some good success, but the side effects were apparently a lot more severe with that particular drug.
           
On this particular trial they actually tell you there’s no placebo, which is a good thing. As a patient, that’s something that’s a bit scary [the possibility of getting a placebo]. With this trial, regardless of what arm you're in, you were definitely getting some form of treatment, and they were going to tell you which one you were getting.

Marika H

I came back to Florida and I found an oncologist (a very, very good oncologist, by the way) and he prescribed the chemotherapy, which I was on for three or four months. The chemo did what the doctors expected: arrested the cancer temporarily, but didn’t eradicate it completely. So my only other choice was going on a clinical trial for a PD-L1 immunotherapy.

I went for my first infusion, which took one hour, and then they observed me for two hours to see that I didn’t have a reaction. I didn’t for the first two hours, but on my way home I had a pretty bad reaction. I started trembling and it was very uncomfortable, so I called up the doctor and they told me to take Benadryl. After that, we changed the length of the infusion, and I haven’t had a reaction since.

My first CAT scan, after three infusions, showed the tumor was reduced by about 50 percent. We were very, very happy with that, and of course I continued with the treatment.
 

Mary Elizabeth W

When my doctor first told me about the option of a clinical trial, I was incredibly skeptical. I didn’t know anything about clinical trials, but I knew I didn’t like the sound of them. I thought it sounded very risky and very scary. I thought, well, they’re not going to give me real drugs. And if they do give me the real drugs, these are drugs that haven’t worked anyway, and so it’s probably not going to work.
 
But I also knew this was really my one chance. So I went in and met with Dr. Wolchok who explained to me what was really going to happen in this trial and what we were going to do together as a team. And that changed everything. Once I had that conversation and I got more information about my particular trial, and about immunotherapy, I started to get hopeful. For the first time.

Ariella C

By the time I got to the nivolumab trial at Memorial Sloan Kettering Cancer Center, I was fairly underweight due to treatment and disease-related complications that impacted my ability to both keep down and digest food. To give an idea, my normal weight is around 150 - by that time, I was at 120 (and hovering). I can still remember my first discussion with the trials doctors; how I broke down and struggled to keep any degree of composure while they walked me through the protocol. Though I was initially skeptical of this new drug (and grumbled that it was just another drug being tossed in the ring), I was happy to have another chance and trusted their judgement. They explained that it would work differently than others - it targeted an exciting new pathway that they were exploring and had worked well in other cancers. Hearing this track record made me feel better.

Ann S

After about four years of chemo, I was not tolerating it well. My white cell count was always critically low. Yet, cancer was still only in my liver and never spread anywhere else, which was a hopeful sign. My oncologist thought we might try Stereotactic Body Radiation Therapy, or SBRT. At the same time, Perjeta was approved by the FDA, so he started me on that along with Herceptin and the chemotherapy Gemzar® (gemcitabine).

Donna F

When my oncologist took me off of the treatments, the tumors started growing again by leaps and bounds. They didn’t spread, but they grew back to the size they were before.

At that point, my oncologist said that I could start a new chemo regimen (I had been so sick from the first treatment that thinking about going through it again was not very encouraging) or he said I could go into a clinical trial of an immunotherapy drug called Opdivo. We went right into the clinical trial.

The main side effect I have, funnily enough, is a problem with my thyroid. I just take a little pill to treat that every day. I’m also a little bit more fatigued the day of and the day after a treatment. If I don’t have anything to do, I’m more willing than normal to just veg on the couch. But if I do have something to do, I’m able to do it.

Barbara L

I went through a shorter treatment of chemo. Then my doctor at the time, George Coukos, talked about the study that I'm involved in now, which is designed to prevent recurrences, which is definitely what I want. I completed the first part of the trial about two or three months ago. Now I'm involved in another part of the study. These [trials] are much easier on me physically and mentally. Now it’s just really one day at a time.

Stephen E

After another CT scan showed that the NanoKnife failed, I enrolled in an immunotherapy trial in June 2014.

I have what is called MSI-high cancer. This type of cancer was showing great success with immunotherapies and my oncologist felt this would be a great opportunity for me. After thinking about it for a few days, I made the decision to enroll in a phase 1 clinical trial with the study drug MPDL3280a (atezolizumab, TECENTRIQ) and Avastin.

Jesse C

The vaccine, to the best of my knowledge, works in this way: they get a pancreas cancer cell, kill it, hook it up to other factors, and then they inject it into you like they would any other vaccine—be it the flu vaccine, shingles vaccine, polio vaccine, etc. It’s much more complicated than that, but basically that's it in a nutshell.

My wife and I decided to do the vaccine for two reasons. One is selfish: conventional therapies don't do much for cancer of the pancreas. The second reason is that I happen to be a retired pharmacist, so I know that somebody's got to be a guinea pig to move a treatment forward. And we felt that if anything good can come out of this vaccine for other people, then it’s worth it.

Donald (Dee) R

The interesting thing here is that a doctor at UConn named Pramod Srivastava developed what they call heat shock protein vaccine and, instead of giving me radiation or instead of giving me chemo, I had maybe 20‑some shots of this. It’s a vaccine made from my tumor.
 
And from that point on, they gave me shots of this heat shock protein vaccine, and I recovered. It was a number of months, but I did recover well enough to be able to go to some games. I could fly and I would go to games at the tail end of the season. I felt like I was a millionaire.

Bob C

After my local oncologist told me about my treatment options, I didn’t want surgery or radiation, so that left chemotherapy. After 16 months of chemotherapy, I was so sick I wasn’t sure I wanted to live any more.  Although the treatment they were giving me at the time was working, I was so messed up, I couldn’t even function. So my doctor took me off of it and said there was nothing left that he could do. He sent me to Yale and Dr. Herbst told me about immunotherapy and how it would retrain my T cells. I wasn’t ready to die so I did it.

Emily H

I made it through the year of standard treatment, which you can watch in the video above. And then I went seeking the last item on my list: the breast cancer vaccine. After some digging (and getting rejected from a few trials) I landed a spot in a study looking at two peptide vaccines: AE37 and GP2. I’ve been taking part in the study since the end of 2013. It’s been a great experience; super easy compared to all of the other treatment I’ve done. I’m very proud to be able to participate in the research process.

Karen K

We knew that chemo wasn’t going to help me much, and that the prognosis was not great at all. My husband, Dave, and I had heard about CAR T cell therapy from my last doctor; he was so excited about it. He just thought that was going to be the best thing.

We sat down with the doctor and I said to her, “Can you get me into the CAR T cell trials?” And first she said, “Wow; they’re really only taking people that have had major treatment.” But then she said, “But you’re right. Why make yourself so sick with chemo?” and she said, “Let’s get you into a trial.”

She called over to Sloan Kettering, and we got an appointment immediately with Dr. Park.

Isadore W

In 2007, my PSA started rising again and my doctors recommended I receive a hormone treatment called Eligard. I stayed on Eligard from 2007 to 2011. When the Eligard wasn't as effective as it was supposed to be, my next treatment option was Provenge. So I started on a regimen of Provenge from October of 2011 until December 2011—a 6-week treatment. 

When my doctor recommended it, I went online and researched it and I thought: what better way to treat the disease than use your own immune cells? I thought it was worth a try to use something that would boost my immune system to fight the cancer.  

Paul M

Since then it has been up and down battle; building up blood & platelets, and building back my endurance. Throughout chemo, I kept thinking to myself, "Isn't there another way of doing this?" I first heard about immunotherapy when I was sitting in the bone marrow clinic. Just as a concept, immunotherapy sounds more right than anything else.         

Deborah W

I was offered a chance to take part in a research study which combined radiation and and the immunotherapy ipilimumab (Yervoy®) to see whether the radiation would boost the effectiveness of the drug. I was randomly selected to receive both, and began treatment in late September, with five consecutive days of radiation, as well as one dose of ipilimumab. I was to receive four doses, one every three weeks.

Brad S

We ended up deciding to get a second and third opinion. Luckily, between my wife and me, we knew the right people. One valuable piece of advice I got, from a neurosurgeon, was that I needed to explore surgery further. He told me if they can take out 10 percent, that can keep you alive long enough to get to see your son born. Because that was my main goal—I wanted to see my son. 
 
When I met with the doctors at UCLA, the first thing I had asked was, “Can you do surgery?” And then the second question I asked was, “What do you have for clinical trials?” Most patients don’t look into that. But because I mistakenly looked at all the nasty statistics of GBM patients, I knew I needed to find something different. I was open to anything. Also, being a teacher, I thought that even if the clinical trial didn’t work for me, it would allow doctors to learn and help others.

Carley R

Carley participated in a clinical trial of an experimental treatment called FANG, which uses your own tumor cells as a vaccine. 


This one just stood out from all the rest because you use your own cells. You're dealing with your own tumor and your own immune system, so it's tailored to you. It's not off the shelf. And it just seemed like a really positive idea to build your immune system to be able to fight cancer, instead of just breaking it down with chemotherapy.

TJ S

I enrolled in a clinical trial at Moffitt Cancer Center that consisted of Yervoy and TIL (tumor-infiltrating lymphocytes, a type of adoptive cell transfer), two types of immunotherapy. I was actually the first patient to ever receive this treatment – inspiring the name of my blog, Patient 1. 

Jeannine W

Through research into decision-making for my third awake brain surgery, I connected with Linda Liau, MD, PhD at UCLA. She is a highly skilled neurosurgeon and an innovative leader helping develop DCVax-L dendritic cell vaccine to boost the immune system and attack brain tumor cells. I had been tracking her work for almost 10 years.
 
It simply and profoundly made sense to me that the immune system could—and did—play a paramount role in a body’s fight against cancer. When I had my first appointment with Dr. Liau to discuss the potential of surgery and treatment with a vaccine, it became clear to me that I should pursue treatment at UCLA.

Michael R

Luckily, for this particular type of cancer there was a pretty standard treatment called R-CHOP—Rituxan is the “R” and then the other letters stand for four other chemotherapy drugs. We talked about doing six rounds of R-CHOP chemotherapy and then, after three or four treatments, I would get a PET scan to see if it had slowed down or looked like it was heading towards remission.

Helena B

The same week that my doctors recommended amputation, I learned about a potential treatment alternative. A colleague had just returned from a medical conference where he heard an American researcher named Bruce Beutler, M.D., lecture on tumor necrosis factor (TNF).

Tumor necrosis factor is a molecule, released from immune cells, that causes tumors in laboratory mice to shrivel up and die. It was discovered in 1975 by former Cancer Research Institute medical director Lloyd Old, M.D., and colleagues at Sloan-Kettering Institute.  

In the lecture, Beutler, who would eventually go on to win a Nobel Prize, explained that TNF was an incredibly powerful molecule, able to smite tumors practically overnight. Initially, doctors had high hopes that this molecule could become a miracle treatment for cancer. Unfortunately, those hopes were dashed when it was discovered that TNF is incredibly toxic; the doses needed to kill tumors would also be lethal to the patient.

Jon D

Since 2013, I've had two recurrences. I'm now stage IV. This is a standard scenario for esophageal cancer: it shucks and jives, moves around, now you see it/now you don’t. It’s a fascinatingly evil kind of tenant that doesn't like eviction notices. While my cancer is now somewhat "stalled" (or "behaving itself" as my oncologist puts it) a stalled cancer is not really what I'm hoping for. Immunotherapy is the best hope for a true cure for many of us with cancer.

The concept of immunotherapy is exciting because of the potential to completely change the protocols of past methodologies of "poison" (chemo), "cut" (surgery) and "burn" (radiation).  I have a dream that oncology will move out of the draconian, but necessary, options of the past into a methodology of the future.
 

Diane A

I had just finished chemo and radiation, and I wanted to do something else. I thought, “What else can I do to help my daughters, my nieces, to make sure that they don't have to go through this?” So that's why I got involved in the clinical research. It was my way of doing outreach, I guess you could say.
 
I'll be honest with you, I don't do the walks and I don't put the pink T-shirts on and I don't go “hoo-ha ra-ra.” I am very low-key on what I do. I will talk to anybody, but I don't go out there and parade it. That's just not in my personality. But my oncologist said, “You’re a great person to get involved in this vaccine trial.” And so I did.

Thèrése B

If you look up clinical trials on the NCI website, there are dozens you can potentially try to sign up for. And so I asked my friend who is a melanoma expert what she thought and she was highly complimentary of Toni Ribas. And Toni Ribas happens to be at UCLA, which is three miles away from where my sister and her husband live. So I was able to stay with them when I went out for therapy. 

It was the PD-1 antibody. So PD-1 is the protein on T cells that acts as a “brake” on the immune response. Malignant tumor cells activate this brake on T cells, which prevents them from coming in and attacking the tumor. So the antibody kind of globs on to that protein and kind of de-represses the T cells so they can come in and attack the melanoma. 

I started in January 2012 and finished up in December 2013. I didn't quite do 2 years. I was feeling really good and Dr. Ribas thought I was doing very well. I had a complete remission 6 months into the therapy so I didn't have to continue the full 2 years. 

Dave H

Well, they took the kidney out. That was the main concern because I guess the tumor was pretty huge. Then they referred me to Dr. Dudek, who told me about the research study.
 
They told me that between the immunotherapy and the Sutent, the lesions I still had should shrink. I had a couple of lesions on my lungs and liver, and most of them are almost all gone now. The one on the liver is totally gone.

 

Philip P

I knew something was wrong, and sure enough he said, "We'll talk later." They said there is nothing we can really do for you. We can put you on chemotherapy. I was going to go down the traditional chemo road, and my wife was on the phone constantly. I could hear her when I was lying in the bed just on the phone talking to people trying to figure out what to do, where to take me. She got in touch with MD Anderson in Houston. And so we traveled down  there in March. I was still really sore from the second surgery and the staples.

We met with a surgeon, and he said, "Mr. Prichard, don't let anybody else open you up again. There is really no way that we can remove the tumor the way it's positioned." He said it had spread like molasses.

But he set me up with an oncologist, Dr. Tannir, and his team. Dr. Tannir came in, and he said, "We've got some hope for you. There’s a new drug—it doesn't have a name, it's a number. We'd like to get you on it. It's a 50/50 shot whether you get on it. You'll either get on the new drug or the standard of care." The drug turned out to be the immunotherapy Opdivo.

Pam G

Doctor Antonia said there was a cancer study drug that had just come out and was being tested in clinical trials. The drug is called nivolumab, and it had only been out for maybe 2 or 3 years. He wanted to get me into that study program as soon as possible, because he felt that was the one chance I had. 

Denise Z

I found out through some Internet forums. Team Inspire is a pretty large message board. It's just a lot of women with ovarian cancer sharing their stories along with some pretty in-the-know people on there that share new therapies and approaches that are coming up. So I found out from there and then inquired at Penn individually. At that point I was in my third recurrence, so I was kind of looking for a new treatment.

*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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