Patients Answer Common Immunotherapy Questions

How did immunotherapy compare to other treatments you may have received, if any?

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. 

Dennis B

Oh, it was a walk through the park. It was a piece of cake compared to the chemo and compared to the transplant. Dr. Brentjens told me jokingly that he viewed his job as putting the transplant doctors out of work. They want to develop [the T cell technique] and perfect it to a point where transplants wouldn't even be needed.

Ann S

When I was diagnosed, Perjeta was not in existence. After years of treatment, I was becoming critically ill, sleeping days at a time, unable to leave the house, susceptible to infection. I could easily see that I didn’t have much time left. Then Perjeta became available and reopened a door had been closed.

I am not special. I have no powers. I didn’t change any habits -- I eat the same, exercise the same. Medical science has a few tricks up its sleeves, and it is possible you will be the beneficiary.  

Sunshine P.

There are two differences:

The physical difference: Traditional treatment is hard on your body. I prepared for chemotherapy with a diet regiment, trying to flush chemicals out of my system immediately with water. I think, as a result, the effects of chemo were minimal.

The effects of radiation, though, were major. I received radiation in three locations (neck, from above and underneath my lung area). After about three weeks, my skin was being burned off my neck to the point where it was gone. I also wasn't able to swallow anything; my throat felt like it was burning all the time. My diet resorted to slurpees and gelato. I became dehydrated, and instead of being hospitalized, I received liquids nightly for more than two weeks. They had to put me through a skin replacement regiment because air hitting my neck caused me to be in extreme pain.

Immunotherapy had none of these side effects. During immunotherapy, I just had to be isolated initially (stayed home and only went to treatments) since it was unknown as to how my immune system would react.

Impact to your support system: When you are receiving traditional treatment, your support system is going through that treatment with you. My sister flew from Los Angeles to Orlando during the weeks I had chemotherapy, and my brother altered his work schedule to take me to daily radiation treatment. With immunotherapy, after the initial treatments, I was able to drive myself to treatment. I regained my independence.

Shann W.

Immunotherapy was a different experience from chemotherapy. Neurotoxicity is not the same as chemo brain. My body was much less impacted by immunotherapy than chemotherapy. During chemotherapy, my brain struggled with fight or flight.

T.J. S

Immunotherapy enables your body and its natural immune defense to play a pivotal role in your recovery. Because of that, I have made significant changes to focus on getting and staying healthy, since it's my own immune system that is battling—and beating—cancer.

Jeannine W

I’ve been through many chapters with different medical teams, and the treatments evolved in the process. I had three awake brain surgeries at NIH in 1998, UCSF in 2011, and UCLA in 2013. Since the brain tumor went from Grade II to III in 2013, I also had radiation, oral chemotherapy called Temodar (temozolomide), and in a phase II clinical trial to receive the personalized dendritic cell vaccine called DCVax-L® developed by UCLA.
 

Fiona R

Immunotherapy treatment is much easier than chemo or radiation.

Nicole B

In many ways it hasn’t changed too much about my life, although the way I live may be different. Even though I’m still fighting, I’m happier. I say yes to every experience I’m offered and try to live the mundane days as normally as possible. I feel like that’s really helped me keep things together and not let cancer take over my life.

Pam G

They gave me a very strong chemotherapy treatment that involved two chemo drugs at the same time: VP16 and cisplatin. And then I would have to go and have radiation therapy as well. I went through about 7 weeks of the chemotherapy, which really made me quite sick. It was pretty devastating to my system and I didn’t know if I was even going to survive that. The radiation became very difficult towards the end. I wasn’t able to swallow anything and keep food down.
 
It turns out that the chemo treatments, the radiation therapy, none of that worked for me. In fact, the entire time I was on that treatment, the cancer was spreading throughout my body. During the chemotherapy, my immune system was depressed big time, and the cancer just took over.

Barbara L

Well, the biggest difference is that when I was diagnosed five years ago, the treatments were much more heavy-duty. It was much harder on me. Physically, I was more tired. When I compare it to the treatment that I'm having now, it’s very different. I’ve had zero issues, not one bad day. I haven't lost weight. I probably lost about eighteen pounds before, and I'm thin to begin with. But I’ve gained back maybe ten of that. My weight now is steady. I didn’t lose my hair, and that’s a big issue for me—as it probably is for most women.

Dax B

My mum just had some chemotherapy for early stage breast cancer. She had a major infection because of the chemo and has been in the hospital for the last eight days and almost died, but she’s getting better now. But it just shows that something like chemo, because it destroys everything in your body, can be a lot more dangerous. Whereas with my treatment, I haven’t seen any change in quality of life, which has been fantastic.

David W

I did not have other treatments.

Bob C

Immunotherapy differed a lot from the chemo. When you’re going to get chemo, you walk into the treatment room and they hang a couple bags and they plug you in and when it all drains out, you’re done.

When I went down for the immunotherapy trial, I had to get EKGs, an ultrasound, an MRI, a PET scan, CT scan... I had to get all that stuff. The doctors and nurses were being really, really, really careful. They administered the drugs over a period of an hour and a half. I constantly had my nurse, Maria, coming in and checking on me, taking my blood pressure. Then, after I got done with the first treatment, they made me sit for an hour and a half. My first day there was eight hours. It was a long day.

Karen K

It was brutal, but I was prepared. I was excited because I knew the sicker I got that meant the better it worked. I ended up in ICU that night. I was there for eight days, in a coma for most of those eight days.

Recovery was really lying in bed for a month. I had to go to physical therapy. I think the scariest part of the whole thing was the mental aspect. It really affects you. They had a neurologist evaluate me almost every day. When I could talk again they kept testing me, asking things like, “Name five words that begin with the letter T.” I could only do two. But they were very calm and said, “It’s okay, it will come back.”

I was released on March 3rd. They did a bone marrow biopsy that day. I went back to Dr. Park a week later and he said, “That first bone marrow biopsy usually shows some cancer, so don’t be upset. Your body is still actually killing it off.” But the bone marrow report came back zero. I was thrilled.

Tara R

I had five surgeries in total during my cancer journey, four of which were in the first two years. Healing from each surgery was very extensive. My first four surgeries were massive, including brain surgery then eight months of seizures. During one surgery (seven hours) six tumors were removed from inside my neck. I was cut from the base of my skull in the back of my head all the way to the front of my neck. Every muscle on that side of my neck was severed, then rejoined. My surgeon removed six tumors, a lot of lymph nodes, lots of nerves, and the artery connected to the carotid artery from the left side. I had no feeling from the top of my head to my breast for six months and barely any use of my left arm. We had no idea what would return if anything. Physical therapy was extensive, difficult, and very emotional.

It's so easy for me to say that immunotherapy was the easiest part of my journey—piece of cake!

Donald (Dee) R

I've had four cancer surgeries. The worst one was they took a foot and a half of my small intestine. The last one was five or six years ago, and the one before that was maybe another eight years before that. They removed a tumor from my liver the size of a baseball. And then they took out the spleen, gallbladder, and adrenal gland. There was some thought that I might not get through that. But thankfully, I did.

But no chemo, no radiation.

Brad S

I was lucky. My tumor really was the size and shape of a golf ball. A little bit smaller than a golf ball. Dr. Liau said, “Look, I think I got it all, but it always has these weird little streams that go off.” And so she recommended I have chemo.

My chemo was for two years: 21 days on, 7 days off. I’d feel like absolute crap and then just as I was starting to feel okay, I’d go back on. Intravenous (IV) chemo does not work for brains, it doesn’t go there. So the chemo for brain cancer is a tablet called Temodar. This chemo doesn’t make you lose hair. But it really does hit everything else. It gives you major constipation, it takes away all of your taste buds. It took me a good two years to get them back. And then there was the complete exhaustion.

Marika H

Other than the immunotherapy, I think they attribute the success to my lifestyle. I had polio at the age of 18 so it’s partly by necessity, partly just the way I am; I’ve always been athletic and I’ve always done a lot of exercise. I’m still swimming about 40 minutes a day. I do yoga just to keep myself flexible, and I try to be as active as possible.

Paul M

I went through nine rounds of the first phase of chemotherapy, then blood & platelets transfusions several times a week. The next phase of chemotherapy was supposed to be every other day for 6-8 months. Around the five month mark, I began to have severe side effects issues, mostly to do with my immune system being torn down. I kept getting fevers, and eventually wound up in the I.C.U.

It never made me feel good that the treatment was going to kill everything inside me. That's what chemotherapy does. It kills everything inside of you, and then you have to come back all over again.

Next I had radiation, and after that got set up for an autologous stem cell transplant, which would use my own stem cells. But then I had a heart attack, and fell off track. My support team and my wife Linda (my “shero”) helped me to get back on track. Another phase of treatment was added to my schedule, which meant even more chemo. Then they found more cancer, which meant I needed get donor stem cells. My son Terrance was a match, and I’m so grateful for what he’s given me through his donation.

Janie P

Immunotherapy is totally different from chemo. The side effects are different. Everything is different. The thing is I would do immunotherapy all over again because with chemo, once you stop treatment chemo doesn’t continue to work. With immunotherapy it has trained the T-cells (the immune system) to kill the cancer and it’s immune response memory.

Donna F

I started out with a combination of chemotherapy, Alimta, and Avastin, which I had four cycles of. Nextmy oncologist put me on Avastin only for four more treatments. And the cancer responded. The tumors shrank. But my body didn’t react well. I was horribly sick from it.
 

Kristin K

One week after my hospitalization from cytokine release syndrome, I was able to visit some Seattle sites such as the Space Needle & Ferris Wheel. This is unheard of with any of the standard chemotherapy regimens I've had. One month after my CAR T cell infusion, a bone marrow biopsy was done and no evidence of cancer was found. My family and I were elated. It is truly miraculous that in a short period of time, resistant cancer cells can dissipate after battling so long under standard regimens. One month after my CAR T cell infusion, I felt that I could easily reengage in life and have the energy level I once had. This is again not my experience with standard chemo protocols. I would easily do immunotherapy treatment again if needed in the future. The initial side effects were minimal as compared to all I've endured. There aren't any long-term side effects which is unlike standard protocols too.

Judy P

It was more grueling than standard treatments. But, since it worked, that is ok by me.

Cole M.

Cole: The bone marrow transplant took a long time. It took more of a toll on my body than the immunotherapy. The immunotherapy felt like it went by so much faster. It affected me, but not as much as the bone marrow transplant did.

Denise: A cancer diagnosis is extremely disruptive to your life and those around you. But having the immunotherapy available to us was by far easier, less taxing.

It was easier on Cole's body. It was a relief to have another option beyond chemotherapy. Overall, it took a shorter period of time and was a less invasive treatment.

Alan K

Immunotherapy was superior to the two neurosurgeries and radiation treatments.

John W.

There is simply no comparison between the one and a half years of chemotherapy and immunotherapy I am currently receiving. During immunotherapy, I don’t have the sickness, fatigue, loss of appetite, or general non well-being that I experienced with chemotherapy.

I have tolerated 48 infusions thus far with the goal of 50 before being weaned-off by the end of 2020. I haven’t experienced any limitations on my active lifestyle.

Shirley D

I would never go through chemo again—I’ve been through it 3 times. Never again, because immunotherapy is a walk in the park compared to regular chemo. My hair wasn’t falling out; my energy wasn’t zapped—what a difference. My friends tell me I don’t even look sick!

Ron S

Like the others, no serious side effects with any treatments.

Karen P

When I compare my chemotherapy treatment to the immunotherapy treatment I had, the two were vastly different. Chemotherapy robbed me of my hair and weakened my nails. Chemotherapy left me open to infection and a pulmonary embolism. I felt weakened, isolated, unattractive, and battle tested.

With immunotherapy I felt fatigued, but then had a wonderful 72-hour recovery, where the symptoms subsided. I was able to keep my hair, get my nails done, eat a healthy diet, dance, travel, and participate in activities.

Lastly, immunotherapy has a longer sustained response. In my case, I am a complete responder and have been off the trial for well over a year now.

Harley C

I have only done radiation treatment, radiosurgery (for 2 small metastatic melanoma in the brain, and nivolumab

K.C. Dill

I had chemotherapy and radiation initially which was brutal. Each appointment lasted a full day. I was on blood thinners and had low platelets (27) so I felt fatigued all the time.

Around the 20th out of 30 radiation treatments, the skin on my chest and back began to blister and burn. I had a hard time swallowing around this time because the radiation was killing the cells lining my esophagus. I was on steroids as well, and I had developed the typical moon face from the prednisone. I was loosing my hair in large clumps.

Dr. Zhang took me off all of my medications before I began immunotherapy. The immunotherapy stimulated my immune system to fight the cancer in a way that chemotherapy and radiation therapy did not. I began to feel better immediately. My coloring improved as well as my counts and weight; my hair returned. I was no longer sick.

My quality of life has not been compromised with this treatment. In fact, I feel just as healthy as I did before diagnosis.

Sharon B

During treatment, I was just so thrilled that immunotherapy had worked that I had little room for any other emotion. But upon reflection, I realized that with immunotherapy, I felt that I played a part in my remission. I felt totally out of control during chemo. I was depending on the meds to heal me. It was empowering to know that it was my immune system that did the job.

Ron S.

Immunotherapy compared to chemotherapy was a piece of cake.

Barry N

Immunotheraphy changed my life! I was able to regain mobility, strength, appetite, relationships, and living with fullness.

Donald F

I had 21 treatments. But by the time I left the hospital, I couldn't feel any tumor on my shoulder. After 3 months, I went in and saw Dr. Coley and he examined me and he determined that I didn't need any more treatments. So that was that. I had to keep going back for examinations every three months and every six months and then the five-year period.

Curtis G

I have seen great results with immunotherapy treatments, The side effects are less harsh compared to chemotherapy.

Dan E

Immunotherapy saved my life. In my humble opinion, nothing else compared. The side effects were tolerable and treatable, and the disruption to my life was minimal. Other than the one day I was required in Los Angeles, I never skipped a beat.

Dale B

My first treatment after diagnosis was surgery. After surgery, I couldn't have any chemotherapy or radiation for a month, and in that time tumors began growing up around the surgical site. 

The first two weeks of chemo, the tumors went down, and then the next two weeks, the tumors came back. My oncologist said he didn't want to give me drugs that didn't work, so we needed to find a clinical trial. 

Compared to chemo, immunotherapy was great. I didn't have any side effects. 

Drew G.

There is absolutely no comparing my immunotherapy experience with chemotherapy and radiation. Chemo strips away your health and made me sick and weak for weeks and months. Radiation for my throat cancer wiped out the taste buds in my mouth for nearly two years, and I still taste food differently than I once did.

Immunotherapy makes me feel almost as if I am no longer sick. I have the energy and strength to do anything I want and having the second chance to live my best life never goes without appreciation.

John R.

Simply put, immunotherapy arrested my tumor with practically no side effects. Conversely, my chemotherapy treatments were terminated after four (three-week) cycles because the chemotherapy was not arresting tumor growth. In addition, while on chemotherapy, I experienced severe fatigue and weight loss, along with significant pain in my left arm and shoulder.

Isolde A.

I didn't go through any other treatment before immunotherapy.

*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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