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Patients Answer Common Immunotherapy Questions

What was treatment like did you have any side effects?

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. 

Michelle B

Although I may not be experiencing the stellar results some other patients have, I think the treatments have been worthwhile. The longer I manage to stick around the more likely it is that I may find some treatment that works. Of course, my first reason to continue trying new treatments is to try and find one that would produce a durable response. Beyond that I know so long as I'm in treatment my family and friends (and myself!) can hold on to at least a little thread of hope that the cancer will disappear. Hope makes life better.

Donna F

When I entered the clinical trial, I really didn’t have much hope for it to help me personally. I was really doing it because I thought my time on earth was probably pretty limited, and that I might be able to help future generations.

But it worked from the get go. I had to have CT scans every six weeks. The first scan showed that the tumors were completely stable. And they have been completely stable since then.

When the doctor told us that I had stage 4 lung cancer, he asked if I had any questions. My question to him was whether I could keep playing agility. So that just shows a little bit about what our attitude was. It was “life continues until it doesn’t.”

Joseph M

I made my first visit to MD Anderson in January 2012, and then the surgery was in April. In the months before that, I was taking the research medicine [ipilimumab]. For the first couple months, it didn’t look like the treatment was having any effect on me. The peculiar thing is the side effects showed up after the surgery. I noticed that my vision started to get weird, and then I started having some diarrhea. I’ve never been diabetic, but I was told I was becoming diabetic, so I had to start taking insulin shots to the tune of four shots a day, and six pills a day, and I had to monitor myself. You’ve got symptoms where you get little sores in your mouth. I developed bad headaches, and then they increased my steroids, and the headaches went away, and eventually everything started to even out. I got on track. But for a little while it was tough. I must have lost 35 pounds.

Luc V

I don't know what is working, but something is working and it's working very well for me. I had some swollen lymph nodes in my neck area. In the beginning, they were quite big and on top of each other. I could already feel during the first week they were getting smaller. And then we had the scans. And if you compare the scans, the reduction was quite spectacular. Three or four times in a row, I had quite spectacular improvements. The most spectacular one was in my lungs.

Nicole B

I had my first Opdivo treatment in June. I had some side effects, diarrhea mostly. In the first scans it looked like my lesions had actually grown a few centimeters. But I only had about three treatments and my doctor told me not to worry—immunotherapy can cause inflammation, which on early scans can make it look like the cancer is progressing. This is sometimes called “pseudo-progression.”

After my 10th treatment, my five lesions have all shrunk by 50% or more. I’m still having side effects, just the diarrhea, which can be severe if you don’t deal with it properly. At first I was put on steroids, but as the dosages went down and I came off them, it would return. It can get worse from time to the time, usually the further out from treatment the worse it gets. (Treatment is every 2 weeks so at the end of my two week cycle it tends to flare up.)

Bob C

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. To the best of my knowledge, the only side effect I’ve had from this immunotherapy is, maybe one out of five visits, the next day I’ll have diarrhea. But I can’t even definitely attribute it to that.

After two treatments, they scanned me and they could see shrinkage. Then two more treatments and they scanned me again and they could see more shrinkage. It has now been six years since I was first diagnosed and the immunotherapy keeps the cancer in control.  I go every three weeks for my treatment and have 20 days in between to do what I want to do.

Denise Z

You have an ultrasound tech, a radiologist, a doctor, and a nurse in the room with you because they're injecting directly into your lymph nodes in the groin area. The ultrasound tech monitors the ultrasound, and the radiologist guides the doctor. Between the two of them, they agree on a suitable lymph node on either side of the groin to inject into. But it's fast and has some pain but nothing that’s unbearable by any means.

Marika H

I’ve been on the trial now for five months. Every two weeks I travel to Sarasota, which is about a three hour trip from my house, and get an infusion. In a way it’s like forced rest. I go there and I take my iPad and I read, and usually my son drives me. I eat, I read, I sleep, so it’s not so terrible.

I’ve had three CAT scans since the first one, and every time the tumor was smaller and smaller. By my last one, it was less than six millimeters, and they said that it’s so small that it’s hard to tell which part of it is tumor and which part of it is just scar tissue.

My hope is, of course, that they approve the drug, because if they do I can do it here locally, and I won’t have to take that trip anymore, which would make my life much, much easier.

TJ S

I wound up being a non-responder, so I began a second clinical trial, this time at Holy Cross Hospital in Fort Lauderdale. I started pembrolizumab (Merck's anti-PD-1 drug, since approved as Keytruda), and had a noticeable immediate regression of tumor (46% in the first 12 weeks). One theory is that the delayed and prolonged effect that both the Yervoy and the TIL have was enhanced by the subsequent PD-1 treatment.

Barbara L

When we get the vaccine done, I think I'm only there about a half hour to an hour; it’s really quick. I'm surprised it’s not painful.

Helena B

I arrived at the Ludwig Institute in Lausanne, Switzerland, in November 1996. The Alpine surroundings lifted my spirits. Una absoluta belleza: the Alps right there, the Lausanne Cathedral, the lake … I looked at all that and I said ‘Lord, don't let me die now, I love this place.

I underwent a TNF limb perfusion procedure and was subsequently able to have surgery to remove the necrotic tumor and save my leg. When they finally took off the bandaging and I looked down at my leg, I saw that it was all worth it. It was a miracle.

Daniel M

The first infusion was all right. The second one was okay. When I went back for the third, they had to stop the treatment because they discovered I had hepatitis in the liver. So they hospitalized me for a week and then they gave me drugs to cure the liver. After about five or six weeks, they said my liver was much better, so they decided to look at my lungs. Nothing had been done for the cancer since I got the hepatitis.

I got a CT scan on a Wednesday and the doctor said he’d ring me back tomorrow with the results. He didn't ring back that day, or the next day, or the day after that. By this time I was really upset and worried. I said, "I'll have to ring him up." Before I could, he rang me back and said, “Daniel, are you sitting down or standing up?” I said, “Oh no.” And he said, “Your results are this: the tumor on the left lung, we can't find it. It's completely disappeared. The tumor on the right lung has decreased by 80%.” Now that was fantastic news to hear!

Brad S

What I loved is that there are no weird foreign medicines in it. It was everything from me, just put back in. The vaccine was made up of my white blood cells—my dendritic cells—and the protein from my tumor mixed together.

It was a piece of cake. The first time I went in, they gave me a tiny little Benadryl 30 minutes before and it kind of knocked me out. After that first one, I told Dr. Liau there’s no reason for me to do this. I’m not freaking out about it.

Dennis B

I went to Sloan Kettering and they hooked me up to a machine which filtered my blood. In the filtering process they took out my T cells. As I understand it, in my layman's knowledge, they then re-engineered the T cells to hook onto certain markers on my leukemia cells. T cells normally don't identify your own body, they go after foreign substances. But they re-engineered the T cells to attack my own leukemia cells. I received the T cells on August 31, 2011.

As far as I remember, the T cell infusion itself didn’t have any bad side effects, maybe some fever. The side effects I do remember were from the bone marrow transplant. 

Dave H

Every three months, I'd go in for my shots. They give it right underneath the armpits and it's like three little pin pricks just underneath the skin. That's about it. Then they monitor me for a while to make sure I don't have any reactions to the drugs or anything. It usually takes about an hour.

A few side effects but they’re easy to deal with. I have some soreness in the mouth and on the feet but it's tolerable.

Dax B

I started the treatment around October 2013. It involves a transfusion, where you go to the hospital once every three weeks. You meet with the doctor, you have blood tests that morning, and then you go next door and get the drug intravenously. It takes about an hour and a half at best, and then you're on your way. 
 
In terms of affecting lifestyle, it’s very minimal. For me, the side effects have been very minimal. I feel exactly like I did two or three years ago in terms of physically what I can do. The only side effect I have recently found with this particular drug is it does make some of your hairs go grey. 

I didn’t bring it up with the doctor, because I thought maybe it was just naturally happening, but luckily she pointed it out, because some of the other patients must have had a similar reaction. It’s not something I should be complaining about, because obviously there are far worse side effects with other drugs.

Sergei G

First I had three or so weeks of daily injections. Then they do the radiation. The node they wanted to destroy was on my neck. So they mark exactly the location of the node with a very tiny tattoo. Then they train the weapon on this node. It took maybe a few minutes at most. And then I had to come another time to repeat the procedure. Over the next few weeks, this node just melted away. Then the immune system, the T cells, starts to find those cancer cells and basically starts killing them. So the whole procedure is very well orchestrated. It's measured almost to the minute, when they do what, and when. It's almost like a CIA exploration.
 
In plain old English, the purpose is to train the immune system on the cancer cells. It sounds kind of simple on one hand: it's pretty much to train the immune system to treat cancer cells as if it were like just a virus. But on the other hand, a lot of research is going into it, and I think it still continues to be researched.

The side effects are reasonably easy to tolerate. I got fevers over 100 degrees a few times. But it lasted only for a day, maybe a day and a half, and we could treat it with over-the-counter medication.

Joe B

I would say it was fairly easy. I found the opportunity to sit still for a minute and read a book or watch a movie with my wife to be very relaxing. They take all of these blood cells on a Monday. They give them back to you on a Thursday. And it's over a six-week period of time. From the standpoint of going through the actual treatment, I would say that was pretty easy. And I seemed to tolerate it very well.
 

Karen K

It was explained that with CAR T cell therapy, they would take my white cells and reengineer them, so my own immune system fights the cancer. And when your immune cells kill off the cancer, you get very, very sick.

My doctor started me on Rituxan and I had a horrific response to it. No blood pressure, my heart was going down to nothing. So after that, they had to hospitalize me to give Rituxan on a very slow drip. But my doctor felt this tough reaction was actually a good thing—it meant I could qualify for the CAR T cell trial.

In October, they harvested my white cells to prepare them, and in February 2015 I was admitted to the hospital. They hit me with two days of chemo, which was nothing. I didn’t feel that at all. And then they gave me one bag of the CAR T cells. The reaction your body has to the treatment is called a cytokine storm. For me, the storm hit within an hour after finishing my bag of cells.

Michael R

They give you the treatments every three weeks with this type of lymphoma, and between the first and second treatment, it was pretty rough. I went through a typical response to intensive chemotherapy initially and felt tired, sick, a lot of other physical things. By the time I started getting into the second and third rounds, I think the treatment was starting to work on the cancer, and I actually started to feel quite a bit better. I actually returned to work after the fourth treatment. So I did start to progressively feel better and feel less of the side effects related to chemotherapy drugs and Rituxan.

Diane A

First of all, you have to be as free from cancer as possible, so it's about a month or six weeks after your last radiation treatment. You have to do initial blood work to establish a baseline. Then you are given the immunization, which is under the skin of your front thigh. You have to come back about two or three days later.
 
This immunization causes a rash, a welt on your thigh. And that shows that your body is reacting to it. I did that every month for six months, followed by boosters every six months. I always say the hardest part was driving to Walter Reed because of traffic.

Kevin L

Obviously, immunotherapy is a wonderful alternative to chemo. There are no long‑term side effects that are shown in the research. The only thing I was told I would experience is basically a year of feeling crappy. I went ahead and I did it, and I definitely felt crappy for an entire year.

So, in December of 2011, I started treatment. It was a very hard month. I went to the hospital Monday through Friday to get hooked up to the machine, start the IV, and sit in the chair with everybody in the treatment ward. I was staying with my great aunt in Pittsburgh, and I would come home to her place and sit at this desk in the guest bedroom and write despite having chills and fever. I'd stop for dinner, around 6:30 to 7:00. When I couldn't stay up any longer, I took anxiety meds and passed out. Then I woke up in the morning and I did it all again.

Carley R

Basically it's like getting your basic flu shot. It took just about as long and it wasn't any more painful than any other normal immunizations I've gotten in my life. I had 8 shots and got them once a month. My last injection was April of 2013.

I still have stable disease—no new growth, no measurable disease—since I've gotten the vaccine.

Donald F

The injection was into a vein. It was a pretty good-size needle and it was a bluish fluid. I had the injection and what it did was it made me very, very hot. The core temperature of my body went way up. The nurses would come in with ice bags and apply them. That would last for, I believe, several hours and then gradually my temperature would revert to normal. Every day that I had a treatment, I had the spike in my body temperature. I don't understand it exactly, but somehow that temperature rise helped confront the cancer as well. Without that temperature rise, I guess they didn't feel it was really working.

Joanne T

I have Perjeta every 3 weeks and have been on the drug for 1.5 years now. I started taking it when I was first rediagnosed, so it was in conjunction with chemotherapy and Herceptin. I had 8 rounds of chemo, and now am receiving maintenance Herceptin and Perjeta. I have found the drug fine—to be honest it doesn’t majorly impact my life. I can still run, cycle, and practice yoga and do the things I normally do. I would have the treatment and no side effects the same day or after. I have been out running the same night after treatment. 

Mary Elizabeth W

I started treatment a couple weeks after my diagnosis at stage 4. First, I had to do a lot of testing to get into the trial, they had to do a lot of blood work. When you’re in a trial, they ask something of you in return, which is mostly blood and tissue. And then I started the treatment and it’s a combination of two drugs. So when I go in, it almost looks like traditional chemo in the sense that I go and I sit in the chemo chair and I get the IV and I’m there for several hours. But what was exciting about it was: it wasn’t painful, it wasn’t scary, it didn’t hurt. I signed off on a long list of possible side effects and held my breath and went home and waited to see what was going to happen, and not a whole lot did.
 
But what was really exciting was when I went back one week later. My doctor looked at my tumor and it had started getting smaller.

Ann S

For a year my cancer was stable on the immunotherapy combo. The second year, my scan showed that I was in full remission, due to what I call “The Wonder Drug,” Perjeta. It’s easy to take, has minimal side effects, and it has made my cancer disappear.

Deborah W

After the second dose, I began suffering from digestive issues and my treatment came to a halt. I had colitis for three agonizing weeks, and started on steroids to stop the immune response that had made me so sick. This meant an end to my treatment with ipilimumab.

Even though I couldn't complete the course, my latest scan showed some of the smallest tumors had disappeared, and the larger ones shrank by almost a whole centimeter and are now just a couple millimeters. I have another scan in three months' time.

Joseph R

It wasn’t what I had initially expected. I thought it would be a series of injections, but instead it was an infusion. I would lie in the Clinical Research Center at UCLA, and they would infuse me over a period of five hours. When the infusion was complete, the nurses would come and check my vital signs every 15 minutes for the next five hours. It was like a 10-hour day. That was the first week of January of 2004.
 
When I went back after two weeks, I was in Dr. Ribas’s office, and I had on one of those examination gowns. Dr. Ribas started to examine me and he said, “My God.” And I said, “What?” And he said, “Those lesions… they’re gone.” I looked at my arm and shoulder and I hadn’t even noticed they weren’t there anymore. “Oh my God, this is gonna work!” he said. “This is gonna work!” “Yeah, yeah, whatever,” I replied—because at this point I was still very sick, very weak, and feeling skeptical.
 
Over the next two or three months, I started feeling better. I started eating again. I started putting on a little bit of weight. I think I gained 30 pounds in three months. That was a lot considering I only weighed 92 pounds by that point. I was basically a 6’4” skeleton of skin and bones.

Stephen E

My current status is that I have stable disease. With the drug I'm on, they have seen people's tumors shrink and then die, but still remain as a ball of inflammation. That might be the case with me, but there is no safe way to biopsy the tumor to see if it is metabolically active or not. So, I'll just keep on keepin' on!

Henrik Vad M

The main side effect was that I accumulated one-and-a-half gallons of liquid in my body next to the lungs. You can imagine that put a lot of stress and strain on my body and was painful. So I was hospitalized for a couple of days, but I still was able to go to Los Angeles for the treatment.

Thèrése B

The only side effect I had was a little bit of fatigue and, other than that, nothing. Every other week, I went into UCLA, had some blood work done. The infusion itself was very straightforward—it lasted only 30 minutes. 

 

During the infusion, I was in the big room with all the other cancer patients. Many of them were breast cancer patients, prostate cancer patients, and they were on multiple drugs for 6 or 8 hours and feeling nauseated. I felt very sorry for them because I was a half-an-hour in and out. 

And the nurses were just remarkable, very kind—a really good oncology nursing staff. So it was pretty much a painless process

Ariella C

I was so used to hearing bad news at that point—every appointment felt like waiting for the other shoe to drop, waiting for something terrible to happen. Needless to say, my expectations were low after so many failed treatments. But all the while, I felt great. I wasn’t experiencing any fatigue from the drug. I wasn’t watching my hair fall out bit by bit. I was able to start eating more and gain muscle mass. But mostly importantly: for the first time in a long time, I was able to start taking care of myself.

Pam G

The side effects to this drug treatment therapy for me have been quite minimal. It’s just been a blessing and it’s saved my life. My goodness, I hope it saves the lives of many people. I just think it’s a miracle drug—at least it has been for me.  

Isadore W

I had some hot flashes and other minor side effects but they were very minimal.  

Philip P

Dr. Tannir said basically it was giving my immune system a key to attack the tumor. He said it would be my immune system fighting the cancer. It seemed almost too good to be true.

Fortunately I got on the experimental arm of the trial, and I went down for my first treatment in March, and then continued traveling to Houston every other Tuesday. By the third month, the tumor had shrunk by about 30 percent. And every scan after showed the cancer had reduced significantly. And I was getting stronger day by day.

My doctor hasn't said that I'm cancer free, but I’ve been off Opdivo since the trial ended in March. He says what he believes to be is scar tissue on my liver. I've gone down every Tuesday for the last three years, it's a little unnerving, a little scary, to be off the drug.

*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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