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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. 

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.

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.

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.

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.

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.

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.

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. 

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.

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.

TJ S

Immunotherapy enables you to have a part in your recovery. Because of that, I have made significant changes to focus on my body being healthy, since it's my own immune system that is battling – and beating – cancer.

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.
 

K.C. Dill

I had chemo and radiation initially. It was brutal. First, it was an all day appointment, and second, I had to skip a several treatments because my blood counts were not up to par. I was on blood thinners and had low platelets (27). 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 steriods as well, and I had developed the typical moon face from the prednisone. I was loosing my hair in large clumps. The first thing Dr. Zhang did was take me off all medications. The immunotherapy stimulated my immune system to fight the cancer and did not need help from any other toxic drug. I began to feel better immediately. My coloring improved as well as my counts and weight, my hair returned. I was no longer sick.

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.
 

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.  

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.

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.

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.

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.

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.

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.

*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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