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. 

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.

Barry N

I had minimal side effects. Sunburn after not using sunblock and wearing long sleeve shirts.

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.

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.

Dan E

Treatment on Yervoy was not bad at all. I would drive about three hours to San Diego from Los Angeles post-treatment and get into bed as I would get achy by then and really be ready for sleep. Next day I would head to the gym. I had some of the main, initial side effects which I was told were positively correlated with a response to the drug, so I was happy to get them. I developed severe diarrhea which was treated with steroids. I developed a horrible itch which is not easily treated. But the alternative was death so I'm OK with that. My advice is listen to your nurses and doctors and report all side effects as instructed. There is never anything to be embarrassed about and they are there to help.

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.  

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.

Kristin K

My mother & I met with the Principal Investigator for the clinical trial so were well informed in advance of the risks/benefits & I chose to enroll. I donated my WBC via apheresis over 4 hours. The cells were taken to lab, engineered with receptors to recognize CD19 marker and grown in the millions prior to receiving them. On Nov 19, 2014, I received my engineered CAR T cells via infusion in a 1hr outpatient setting with my mother and partner by my side. We were wearing our Choose Hope t-shirts & excitement filled the room. Later that night I was admitted for high fever as a reaction. On the 4th day after infusion, I experienced the much anticipated cytokine release syndrome, which is an inflammatory response. I was hospitalized for 5 days while I experienced high fevers, body chills, muscle aches, night sweats, low blood pressure, and slight mental fogginess. I was then released to outpatient monitoring for a month.

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.

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.
 

T.J. 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.

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.

Shann W.

The day after my first CAR T cell infusion in 2013 I developed serious side effects—a fever and neurotoxicity—and had to go into the hospital. It was a mild to moderate cytokine storm. I was released after one night in the hospital, but had to go back the following day when I momentarily lost consciousness at home. After these two hospital confinements, I recovered quickly and was able to go home with no further treatment. I did have a near bone marrow failure in the months following the CAR T cell therapy, but that turned around slowly.

When the leukemia returned in 2019, the oncologist put me on an experimental trial with pembrolizumab (Keytruda®). At first, it seemed to work, but by the second infusion, the leukemia cells began to show on scans again, so the oncologist took me off the trial. About two weeks after the last Keytruda® infusion, I had an intense autoimmune reaction involving my skin and nerves. I was given a steroid, prednisone, which helped reduce the side effects. The steroids, however, delayed the start of my next immunotherapy: blinatumomab (Blinctyo®).

When the skin reaction cleared up, I went into the hospital to be hooked up for a Blincyto® infusion, 24 hours/day for five weeks. I went into the hospital three times for infusion hookups and had side effects each time, but they waned in power. The initial side effects were very similar to my reaction to the CAR T cell infusion. For the final two infusions, I managed to do a home infusion with Providence. I had very mild side effects during and after these final infusions. The plan going forward is to end the Blincyto® and hopefully stay in remission.

David W

All of the scans, lab work, and waiting for results was the most difficult part. The treatments themselves were almost anticlimactic. My wife and I planned the days well and gave ourselves plenty of travel time. We had to put ourselves in the mindset that it would be a long day but we could still enjoy it. We arrived at UCLA early, had breakfast in the cafeteria, and waited for our appointment. We brought a cribbage board so we would go outside and play a game or two. After seeing the oncologist and having blood drawn we would go to the infusion center and be there for 3-3.5 hrs. I tolerated the infusions well. Side effects were fatigue, itchiness, and colitis type symptoms. All of which were tolerable and manageable. The hardest side effect to adjust to was the digestive changes.

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. 

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.

Erica B

Absolutely nothing to complain about. In the several years following my Stage IIIa diagnosis it would have meant being referred to a hospice facility based on where I was upon Stage IV diagnosis. Maybe I have been lucky, but anything I might think was a side effect could very well just be the cancer itself.

Judy P

Treatment was physically taxing. I was told that it would feel like I had a really bad case of the flu. That was accurate. In addition, I also had rigors. After I was treated, another woman died as a direct result of the treatment. She got a staph infection when she was immunodepressed, her body shut down, and they were not able to save her. So, there can be grave risks associated with some immunotherapy treatments.

Cole M.

Denise: Cole got the CAR T cells on Thursday, and that Sunday night he started having aches toward the back of his neck. He and his brother had been playing so at first we were wondering if it was from that. And then he started getting a fever and steadily, as time went on, his blood pressure was getting lower. So he ultimately, for the first time, he stayed out of ICU. It was amazing. And so the doctors started the prophylactic Tylenol, and they sent him up to ICU so that he could be monitored.
 
And so that was the start of the cytokine release syndrome (CRS), which lasted about three days. The doctors closely managed him during that time. He wasn't himself at all over those three days⁠—he had neurological issues. That was the scariest time because he was like a totally different person, and you just wonder what’s happening. But in the same regard we knew then that the CAR T cells were working. So it was kind of a bittersweet feeling.
 
After three days, he woke up, he returned to his normal self, and had no recollection of what had happened.

Dale B

Immunotherapy treatment was great. I had none of the side effects of chemo; in fact, no side effects at all. Everything returned to normal. My appetite came back. 

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.

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.

John R.

During the first month of my immunotherapy (October 2013), I was suffering from residual side effects of chemotherapy and cancer with fatigue, pain, weight loss, and pleural effusion.

Once corrected by medical intervention at Walter Reed, my side effects were eliminated with the exception of minor skin itching. The fatigue and pain were gone. I regained weight. Most importantly, the CT scan at Johns Hopkins at the nine weeks mark, after four nivolumab (Opdivo) infusions, showed a most welcomed 65 percent shrinkage in tumor size.

I have received 125 Opdivo infusions during the past 77 months [as of February 2020]. My tumor has shrunk by over 82%, and has remained stable to date. I negate minor side effects related to skin itching with applications of Cetaphil, a moisturizing cream.

Ron S.

Basically, the treatment consisted of three to four hours of intravenous treatment with nivolumab and ipilumumab. I received the combined immunotherapies for about four months, from April through August 2015.

Side effects included a slight feeling of an electrical charge throughout my body followed by a draining feeling of a much-needed nap. In my case, the only side effect was that my thyroid blew a year after completion of the trial.

Isolde A.

Treatment went so well for me. I looked so healthy that no one noticed what I was going through. I told my team in the office that I may have problems with my memory or difficulty speaking, but I never did. I had my infusion on a Friday and rested over the weekend, so by Monday I was recovered and ready to go to work. I had a normal life, came to work as any normal person, and nobody noticed I was ill.

My doctor decided to delay my treatment for a week only once when my liver enzyme levels were high.

Harley C

Tolerating nivolumab (Opdivo) very well. No side effects so far, and I will have cycle 6 next week.

Alan K

My doctors and nurses were kind and patient. I suffered with anxiety, dizziness, and severe itching. My treatment sessions were scheduled every 2 weeks, always on a Tuesday.

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.

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.

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.)

Gordon L.

Immunotherapy is very different from chemotherapy even though both are administered by way of infusions. Side effects from chemo are immediate and intense and then fade away. Side effects from immunotherapy do not present for several days, and for me, were much less severe than chemo. They included itching, light rash, digestive irritation, and fatigue.

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.

John W.

I didn't have side effects other than adrenal insufficiency, which I controlled with low dose of the steroid prednisone.

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.

Fiona R

I felt a huge relief to start immunotherapy treatment. I saw how the immunotherapy was shrinking the tumors by drawing a circle on the skin above the largest remaining tumor, and watching it shrink after the first two immunotherapy infusions.

I had some minor side effects initially, which have increased slightly as treatment has progressed.

Tara R

For the first several months during the half hour of my actual infusion, I went from speaking normally with my nurses to barely being able to speak words. It drained me so much. But I did drive myself to treatments. I only lived a few miles away from our infusion center. After treatment, I drank a cup of coffee and regrouped until I could drive home.

After several months of treatment, I realized that when I had a cup of coffee and some protein immediately before treatment, my body dealt with it better. As time moved on my body acclimated to Keytruda®. It made me a little tired overall, but other than that I didn't have any other side effects. I believe strongly that I tolerated it well because I took great care of my body on a daily basis. I ate very healthy—lots of fruits and vegetables daily. I also exercised regularly and slept well.

Drew G.

I have been receiving immunotherapy for over two years and it has been amazing. Immunotherapy has helped me live a fairly normal life again and has allowed me to enjoy health as I once knew it. An unexpected bonus has been no side effects from treatment. Immunotherapy has given me my life back and I am making the most of the opportunity!

Janie P

With Keytruda I had many adverse reactions and side effects. Even after stopping Pembro in 2017 I developed Guttate Psoriasis which lasted 7-8 months and covered my entire body and was directly linked to the Pembro.

Oswald P.

I went back in to CUIMC every three weeks for my treatment. By my second treatment, I had already started to put weight back on. My skin was looking great, I was going to the gym, I had my energy back, and my appetite was good. It was really a quick turnaround.

I went from not being able to walk across a room to being able to be on the elliptical for an hour. You go into immunotherapy thinking you're going to have some good days and some bad days. I've had a lot of great, great days.

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.

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.

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. 

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.

Brendan C

I ended up having surgery the month after my diagnosis to remove the mole, as well as two minor lymph node dissections. I went into surgery thinking that they were just going to remove a mole and I would be good to go. I was naïve. I didn’t fully understand what would come next.

The healing process was long, as the hole took months to heal due to letting my body regenerate the skin from the surgery. Later that summer, I had a PET scan that revealed my lymph nodes were all clear under both arms. Then, around November, I had another PET scan which showed metastatic melanoma. There was a tumor in my left shoulder area and armpit, as well as in my right femur.

I went to Yale University Hospital and reviewed treatment options with Dr. Mario Sznol. He recommended a clinical trial at the NIH involving IL-2 and my own immune cells. I was deemed a perfect candidate during the interview process: young, non-smoker, no past cancer or family history of melanoma. I was slotted to start treatment right after Christmas 2010.

IL-2 basically uses your body as an incubator to multiply the cells and continue to fight off the cancer. I had a reaction around Labor Day in 2011. I broke out in hives all over my neck and upper back. I went to the emergency room and needing a steroid to counteract the reaction. At my next appointment, my doctors and I decided I didn’t need to continue the trial since there was no more visible cancer, my last treatment was September 2012.

Then, between January and July 2012, I went back to the NIH four times for three check-ups. Each trip showed improvements.

However, in July, a scan showed a slight enlargement in my left shoulder area. Once that happened, the NIH directed me back to Dr. Sznol at Yale. He recommended a clinical trial with Dr. Jedd Wolchok at MSKCC pairing ipilimumab with nivolumab. I started this trial at MSK in September 2011. I went to MSK every six weeks for treatment. I showed great reaction to the medicine combination and the cancer around my left shoulder was getting progressively smaller. It was shrinking, but only in very small percentages.

In June 2012, I went in for another surgery to remove the remaining cancer. I continued the clinical trial, even though at that time I didn't have any detectable cancer.

I remained on the trial until May 2014. I went back for scans on my chest, abdomen, and pelvis, but wasn’t receiving any treatment. As of May 2014, I was officially off the protocol. I now go back to MSKCC just once a year for scans.

Ron S

The only side effect was occasional tiredness.

Karen P

My treatment included an infusion every 21 days of two different immunotherapy drugs (a PD-1 checkpoint inhibitor and an IL-2). The combination of these two drugs stimulated my immune system to clear the cancer. The side effects of the IL-2 included peeling of the skin around my eyes and lips. I also experienced severe fatigue, a rash around my chest area, shortness of breath, and severe arthritic pain.

Curtis G

The only side effect I have experienced is fatigue.

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.

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.”

Isadore W

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

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.

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.

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!

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.

Samir T

The major side effect was diabetes, but it is one that I can deal with. You gain some, you lose some, but I gained more than I lost. So that's where I am with that today. 

Michaela M

For the first year, treatment was pretty smooth. Aside from a little fatigue the day of infusion, I had little to no side effects. I felt really pretty good, was able to live my life normally, and stayed busy with my kids and all kinds of physical activities.

About a year after I started treatment, I started experiencing increased fatigue and shortness of breath, all the time, even laying down.

In the beginning of May 2017, I was diagnosed with pneumonitis, a rare side effect, which basically meant that my immune system was now in overdrive and my lungs were cloudy with white blood cells. I was treated with a course of high-dose steroids for about two months, tapered down and came off of that rollercoaster in time to sing for my brother’s wedding. I sang for the wedding on July 1, but the next day I had a fever and went back to the hospital. X-rays showed the pneumonitis was back with a vengeance. I went back on the steroids and tapered down more slowly this time. By early October, I was down to a very low dose of steroids, riding my bike, and feeling great.

A month or so later, we took a family trip to New Mexico. I felt tingly in my face and neck on-and-off while we were there. I thought it might have been the altitude., but on the plane heading home, I had a hard time breathing. They had to announce over the loudspeaker, “Is there a medical professional on board?” A registered nurse sat next to me and held an oxygen tank for me.

I started another round of steroids right away, and this time, I asked for specialists to intervene. This had gone on too long. My oncologist brought in a rheumatologist and a pulmonologist. They did a lung biopsy, respiratory functioning tests, and bloodwork for autoimmune diseases that they suspected could have been triggered. But nothing showed up. I just had to wait it out.

Meanwhile, my lymph nodes were shrinking, but my blood sugars are off the chart. (Did I mention I’m also a diabetic?) The steroids wreaked havoc with my blood sugars, and sometime before the holiday in December, I end up in the hospital for borderline ketoacidosis because we realize the steroids messed with one of my diabetes meds. We got my sugars under control, but then I had what they call “moonface,” “round belly,” and my personal favorite, “buffalo humps,” from the steroids as well. I had never heard of these things and I’ll be glad to never have to deal with them again. (Although, of course, I had to renew my driver’s license on my birthday in December that year, so I’ll have that photo to remind me for a while.)

All kidding aside, those side effects subsided, but the pneumonitis stuck around for a total of 8 months. (I was told the typical duration was maybe three weeks and the rate of occurrence was maybe 3-5%.)

But I survived! And by the following summer, there was just one little pesky lymph node that didn’t seem to want to shrink, so we just continued to watch it for the next several months until finally, my oncologist said, “why don’t we just remove it and let you get on with your life?” (or something like that).

Removing it meant a hemicolectomy because of the way the veins are wrapped around the colon there. We thought, “ok, fine! But let’s do another colonoscopy and see what’s going on in there now post-treatment, right?”

I don’t know about you, but I stay semi-awake for my colonoscopies. I mean, I had to see this one for myself! Just in case you don’t know, you cannot see what is happening inside the bowel with a CT, which I was getting every nine weeks. So we were just assuming the tumor in my colon was also shrinking like the lymph nodes we were watching on the CT scans. I hadn’t had a colonoscopy in three years since my initial diagnosis. And guess what? My gastrointestinal doctor couldn’t even find scar tissue from where the original tumor was. It was completely gone—not a trace! She was practically giddy! When she called me the next day with the official lab results, she said the lab had to call her back and double check that this was a stage 4 colon cancer patient. They couldn’t believe it.

A few months later, my oncologist told me they have been finding that, sometimes, more severe side effects indicate a patient’s tumor would have a stronger and more durable response to immunotherapy. I haven’t seen the paper on that with my own eyes, but I’ll take it.

I did end up having that hemicolectomy in April 2019 and have had no evidence of disease since then and still going strong!

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.

Sunshine P.

I received treatment every two weeks. The process, including blood work, a physical exam, and then the infusion, took an entire morning. At first, the only side effect was fatigue, but after a few months, that subsided to mostly no side effects.

K.C. Dill

Treatment with immunotherapy was so much easier than what I expected. At each check-in appointment I would first have my blood drawn by a nurse. Then I would wait to be called in for my appointment with Dr. Zhang, who would update me on my blood work and ask me general questions about how I had been feeling the past two weeks. After each appointment, I would go to the infusion center for treatment.

This whole process took about three hours from arrival to completion.

The longest wait would be for the pharmacist to mix the nivolumab. The health care team based my infusion dosage on my current weight.

The only side effect I ever experienced was flu-like symptoms, and this only occurred once after my first infusion. My health care team told me this was a good thing because it meant my immune system was responding to the treatment. I began to feel better immediately after treatment.

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!

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.

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.

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

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.

*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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