Patients Answer Common Immunotherapy Questions

I was misdiagnosed for almost a year, which is pretty common in young adults because they're generally liable to sports injuries. I did physical therapy for a really long time until eventually I lost feeling in my left side of my leg and the pain had pretty much gotten out of control, so I went to go get an MRI. It showed stage 4 Ewing's sarcoma.

In September 2011, I was diagnosed with chronic lymphocytic leukemia (CLL) and small lymphocytic lymphoma (SLL), but they say they’re kind of the same. I was diagnosed via blood work, and was told by my doctor, “If you’re going to get a cancer, this is a great one to get. You don’t have to worry about anything.” He said you’ll probably go 20 years before we even have to do anything. I just went in every three months for monitoring with blood work.

But in July 2013, at the urging of my friend, I got a second opinion, and had a bone marrow biopsy. The results showed that I had these mutations that I didn’t know existed; one was a 17P deletion, the second was CD19, and there were quite a few others. These mutations meant the cancer was more aggressive and harder to treat. But still, nothing really changed; I felt fine, and kept going for blood work.

I was diagnosed with stage 3a melanoma on July 14, 2010, when I was 23. The cancer was removed surgically, but two years later returned in my lungs. Currently (2015) I am stage 4, with the cancer spread throughout my body. Since 2012, I've participated in several immunotherapy clinical trials.

 I was at the doctor’s office doing routine blood work. My PSA level was a little high, so the doctor sent me to a specialist who ended up doing a biopsy. Sure enough, it came back positive.

I had my wife with me. She didn’t cry, but she was emotional. In my family, cancer ran rampant. My mother, her siblings, and her dad all died of one form of cancer or another, most of them before the age of 57. So when you hear that you have cancer, you automatically think that it’s a death sentence.

In August 2010 at age 36, I was at work when I received the call from a doctor who informed me that the cyst growth that had been surgically removed from the top of my head a week earlier was Acute Lymphoblastic Leukemia (ALL). The doctor said they checked the biopsy results 3 times as they were shocked as it was a highly unusual representation as I had no other physical signs/symptoms. The doctor informed me that I had to leave work asap to go do ordered blood tests & that I was scheduled to meet with an Oncologist the next morning. During the oncology appointment, my world exploded as I learned about the 2-year treatment protocol, quick need to unload my life, need for immediate long term leave from work and pet care due to long inpatient stays and high likelihood of being left infertile after treatments. I sought a second opinion, started educating myself & chose to fight the cancer!

When the 44-year-old former star athlete started getting migraines, he knew something was wrong. After seeing a neurologist, Brad learned he had glioblastoma multiforme (GBM), a rare brain cancer with a very poor prognosis. An MRI detected a golf-ball-sized tumor in his left lateral lobe.

June 2017 after a minor car accident I felt a painful lump and went to see the Doctor. I was refereed to local Hospital, had MRI and Oncologist delivered the news.

It was about 10 years ago, late fall, and I got this terrible pain in my stomach. I went home and was out walking and then I went home and the pain got worse and I was sweating. My wife called 911 and they sent an ambulance and two attendants. They rushed me to the hospital and did all kinds of research and tests. At about 6:00 am, a doctor came in and told me that I had cancer. They determined that the cancer was a tumor on my liver. Right away, my wife called Peter Deckers, M.D., who is a renowned surgeon, and an oncologist, who came from my hometown of Worcester. He was the Dean of the University of Connecticut Health Center. 

I visited a dermatologist where he removed the mole and sent it to the lab for biopsy. Three days later I received a call informing me the mole was malignant melanoma. I was devastated with the news. My Dad was diagnosed with metastatic melanoma about 5 years prior, so I was already somewhat familiar with what I was facing.

I found out in February of 2008 that I had lymphoma. I started feeling not quite normal in November 2007. I knew something was pretty wrong because of the tiredness I was feeling and the fact that I was losing weight pretty rapidly. I went in to the doctor in December 2007, and they started running various tests to try to determine what this might be. There was a 30- to 45-day waiting period, and I told the doctor to just call me with the diagnosis, because my preference was just to know as soon as possible. I was actually sitting at work when I found out, which was a little odd. Of course, I called my wife immediately, and then my boss, who knew something was not right either. I was not looking well or feeling well at all.

On March 18, 1998, at the age of 24, I was diagnosed with a brain tumor. I knew nothing about cancer, and certainly not much about healing. Necessities offer profound invitations to educate and self-advocate with new strategies for optimal health and healing.
 
Dealing with the unthinkable, my dad, John, and mom, Barbara, entered a new world—with their young adult daughter as a brain tumor patient. They gave me absolute love and helped in the best ways possible. My brother John, in college at the time, also gave me so much through his loving care. Extended family and friends helped with whatever they could do. That has evolved through my cancer journey from 1998 until now in 2015.

I was diagnosed in April 2013: esophageal adenocarcinoma, stage IIIa. I had experienced acid reflux for years. I immediately went into combined chemo and radiation therapy and then had esophagectomy in August 2013.

I knew going in that of those who are diagnosed with esophageal carcinoma, 87% die within 18 months. Austere odds, but I also know that statistics apply to whole populations, but not to any one person. 13% survive for five years or more. I’ve always been healthy, even athletic. Minimal drinker. Non-smoker. No recreational drugs. No degenerative conditions. I have strong support from my wife, children, family, and friends. Why shouldn’t I be one of the 13% who survive? I dove immediately into treatment, my wife and daughters behind me.

I have a little joke: People commonly note, "Jon! You're looking good." (As if, for some reason, I shouldn't.) My reply is: "There are three stages of life: Youth, Maturity, and 'You're looking good!'"

In the summer of 2010, I discovered that I had a little scab on the top of my head and I didn’t think much of it for a while. I just assumed it was a scrape or a reaction to my shampoo or something. I went to my dermatologist and she said, “That looks like skin cancer.” Even then I still wasn’t concerned. I thought, well, skin cancer, that’s not so bad. That’s not like real cancer!
 
Then a few days later I was sitting at my desk, getting ready to file a story, and the phone rang. And my doctor said, “I’m very sorry. It’s malignant.” The next day, I went to Sloan Kettering and I met my brand new oncologist.
 
I had surgery. I told my family. I told my friends. I went through it, I went through the recovery. I was told the margins were clean. Everything seemed great. People started calling me a survivor. And then about a year later on a CAT scan there were some spots on my lungs. I went in for some more testing and I had a surgical biopsy and they told me that it was malignant again. The cancer had broken off, it had metastasized into my lungs. That’s when I was told I was stage 4.

I was first diagnosed with lung cancer in 2012. I hadn’t been to the doctor for about 10 years, and I kept gaining weight and didn’t know why. I finally went to the doctor because I thought something was wrong with my thyroid. During the exam, she felt a little knot on my collar bone, so she sent me to get a CT scan that day. And sure enough, the CT scan showed that there was a problem, but it wasn’t what I’d thought.

Within three weeks, I went from having no clue whatsoever that I was sick—I was working full time and doing dog agility several nights a week and every weekend—to seeing an oncologist and learning that I had stage 4 lung cancer.

When I was diagnosed with breast cancer, I was 38 and married with two young children. Our daughter was five months old and our son was 2 ½ . It was a huge shock. I opted for a mastectomy with immediate reconstruction. Personally, I didn’t want to wake up after a mastectomy without a breast. For me it helped me cope with my self-image and treatment.  I had 6 cycles of chemo, 4 weeks of radiation, a year of Herceptin, Tamoxifen for 5 years, and lastly Zolodex for 2 ½ years. I finished treatment in 2012.

I’m a 29-year-old pharmaceutical representative from Rhode Island and New Jersey. I love traveling, reading, and a good glass of wine! Before I was diagnosed with melanoma, my best friend Christina was diagnosed with cervical cancer. I spent a year fighting right along with her, raising money for hospital bills, and being the best friend I could while my friend was going through something so devastating.

About two months after Christina found out she had no evidence of disease (NED), I went to the doctor myself. I had a lump behind my ear that suddenly had grown bigger. After a biopsy of my parotid gland (a salivary gland near the ear), the doctor found melanoma, and I was sent to Dana-Farber.

My first PET/CT showed only my parotid gland was affected, so the surgeon at Dana-Farber successfully removed the gland without having to sacrifice my facial nerve. I also had a neck dissection to remove all 21 lymph nodes in my neck. The lymph nodes came back clear, so I thought I was safe.

Well, we have to go way back to 1991. I was with some friends who were fellow medical residents and we were hiking up in the Sandia Mountains. One of my friends was walking behind me, and he noticed I had an unusual looking mole on the back of my leg. That was when I was 31. It turned out that it was a minimally invasive, very small melanoma that had arisen out of a mole I'd had all my life. I had that removed in late 1991. It was shallow and there was no evidence of spread, and 98% of people are cured with that level of invasion. 

Then in late 2011, Christmas time, I was bringing a Christmas tree in from the garage to put up in our house. I banged my leg and noticed a bump after that, and thought the bump was from maybe the Christmas tree. But it didn't go away and it didn't have any bruise. So that's when I approached one of my friends in our department, who's a fellow pathologist, and said “Do you think I should get this checked out?” And she said, “Yes.” So right away she did a fine needle aspiration biopsy of that and it turned out that it was metastatic melanoma. That's one of the very strange things about melanoma—it can show up many years later, and it did. 

I had neck pain. This wasn’t uncommon for me, but it was particularly bad that day. So I went to the emergency room. They gave me a CT scan and they discovered a mass. I then went to a thoracic surgeon. He sent me for a biopsy and they determined it was lung cancer that had metastasized to my adrenal gland.

Like many other people, I found a bump on my neck. I couldn't explain what it was and I didn't pay much attention to it. Then it kept growing, slowly, and it kind of looked strange. So I went to see my doctor who immediately sent me to another doctor. He did a minimal biopsy. Then a PET scan confirmed that there was something in my neck. Finally, an incision biopsy gave me a diagnosis of follicular lymphoma.

On June 15, 2017 the left side of my body suddenly stopped working. I could not write my name. I went to the local ER thinking it was a stroke. Scans of my body revealed several masses in my brain and in my lungs. I spent the next 18 days in the hospital undergoing brain surgeries and recovery.

I was experiencing facial swelling and fatigue which I contributed this to allergies. I was taken to the emergency room for shortness of breath and the CT scan revealed a large mass in the center of my chest. The oncologist on call that evening only gave me 30 to 90 days to live due to the position of the mass. I told him He didn't know me or my God and that he was mistaken. I began emergency radiation treatment 3 days later.

It was a routine mammogram, both times. I hadn't felt anything at all. I've had it twice, one on each side, about four years apart. I had radiation the first time, then chemo and radiation the second time. I had two lumpectomies, one on either side. My second bout had gone a little into my lymph glands and we did a sentinel node biopsy. Then they took out five or six lymph nodes. 

Early in March 2012, I was experiencing neck pain. I visited the doctor and was told that a possible infection was there and to give it a week to see if it cleared up. After a week it did clear up but returned on the eigthth day. I revisited the doctor and within a week, I received the diagnosis.

In 1985, I started getting scaly patches on my head (actinic keratosis). I went to the dermatologist who would freeze those away. Years later, cancerous cells started appearing. In December 2015, after surgery, I was diagnosed with cutaneous squamous cell carcinoma and the cancer exploded across my head. 

Denise: Cole was almost two when he first diagnosed at a checkup appointment. He had a cold that week, and a fever. Luckily, they did blood work, because at the 2 year is when they check for iron levels, and they saw that two of his blood components were low. So they sent us for further testing and that led to his leukemia diagnosis.

We learned about Cole's first relapse at a regular eye appointment. The optometrist  thought that he saw a little swelling in Cole's optic nerve so that led us to go to an ophthalmologist. Through a series of tests they saw that indeed it was swollen, and then that led us to an MRI that was negative for anything. Then that led us to both a bone marrow aspirate and an LP and then that’s where they found out that he relapsed.

The last time he relapsed was last year. He was at school and had stroke like symptoms. That led us to have the MRI and then the lumbar puncture and bone marrow aspirate.

It was 1953, a long, long time ago, and it was bone cancer—a sarcoma. It was on my right, the upper part of my right humerus. In that day and age, they didn't know as much as they know today and they told my parents that the diagnosis was not good and, worse than that, they said I had three months to live. So they wanted to amputate my arm. In lieu of that, there was a possibility of going down to Memorial Hospital in New York and being treated by Dr. Coley. So I did that instead.
 
 

I had DCIS in 2003. Ten years later, in 2013, my cancer recurred and was now metastatic.

I initially complained of pain in your back, doctors thought I had gallstones. They thought we had better get a scan done and check to see how many I had. At that point, I was still at the urgent care facility. I went home and grabbed my wife because I couldn't drive anymore, it was hurting so bad. Then we went up to the hospital and had the scan done. While we waited in the waiting room, the phone rang. I didn't answer. My wife did, and that's when they told us: I have cancer in my kidney. It was a complete shock to both of us. I mean, even though I was hurting so bad, I thought I would have to pick my wife off of the ground.

It was around November 2011, when I first discovered a little lump on my right wrist. The labwork showed that it was melanoma. I was referred to the Melanoma Institute in Sydney, where they discovered that my melanoma was nine millimeters deep. Anything over four is considered the worst category, so it was a bit scary initially. 
 
In December 2011, they did a sentinel node biopsy to see whether it had spread or not. When they got the results, they discovered there was a tiny—less than a millimeter—positive result in the sentinel node. So I was advised to have a full dissection of the lymph nodes on that side of the body.
 
That operation was actually quite serious. I had a bag that collects the lymph fluid sticking out of the side of my chest for about six or seven weeks. That was a bit of a challenge, getting around with that tucked under my shirt. The operation kept me in hospital for three or four days, and then I was at home for another week after that. They did a scan at that point and I was clear of any other tumors in the body, which was great.

It was in spring of 2012 that I realized I wasn’t feeling well. I was doing a lot of traveling for work and feeling very fatigued. One week, I came home after having just driven 18 hours from Charlotte, and crashed. My wife, Susan, woke me up the next day and said we were going to the doctor.

We went on Monday morning, and he did a lot of feeling around on me. He started pushing on my abdomen around my lower right rib, and said “Well, that's not supposed to be there.” And sure enough there was a hard spot right under my rib. They put me in the hospital on Friday, cut me open, and removed a 3.8 pound tumor.

The day of my surgery was also our second wedding anniversary. Susan and I were like “Happy anniversary! Yay!” About 40 some odd staples later, I got out of the hospital. I went home on Monday, and it was a lot of bed rest. I wasn't working. I stayed in bed off and on for about a month.

In 1994, while traveling in California, I discovered a lump in the inner thigh of my right leg. Upon returning to Colombia, I was diagnosed with malignant melanoma. By this time, the cancer had spread to surrounding lymph nodes and my prognosis was dismal: I learned that the average 2-year survival rate for patients with metastatic melanoma is less than 25%. 

I had surgery to remove the affected lymph nodes and began radiation and chemotherapy. The cancer went away for a time, but eventually it came back and had to be removed once more. This would become a painfully familiar process: over the next two years, I had nine surgeries to remove recurrent melanoma. When the cancer attached itself to her femoral artery, doctors told me they could no longer hope to spare my leg; it would need to be amputated.

“No. My leg is going to stay with me," I told them. "I don't have a problem with dying. For me, the problem is living and living well, and that means living with my leg.”

When I told the physician my symptoms, she sent me for a chest X-ray. Afterwards, she called me into her office, and delicately told me there was a mass the size of my fist outside of my right lung. I glanced down at my hand and didn’t know how to process the information. I felt completely overwhelmed.

Next up was a biopsy, after which I was diagnosed with Hodgkin lymphoma. Hodgkin’s was pitched as “the good one”: typically folks just needed some chemotherapy, maybe some radiation and they were out the door. That was what we all expected - it didn’t quite pan out that way.

In 2006, they found a small melanoma on my ear. They removed it surgically with a certain safety margin. I regularly went to the hospital for checkups and everything was fine. After 6, 7 years, nothing had spread inside my body so we were very confident that the problem had been solved. And then, all of a sudden, in September 2013, I felt that the lymph nodes in my neck were swollen, so I went to the hospital. They started doing CT scans and then they found out that it was stage 4. It was in my lungs, liver, bladder, on both sides of my neck...I think in total on the CT scan I had about 40 tumors. I was in a lot of trouble at that point.

I was first diagnosed with cancer at around age 50. It was uterine cancer, and I had a complete hysterectomy. Then about 15 years ago, I was diagnosed with kidney cancer, and my left kidney was removed. I was doing very well. I didn’t need any after‑treatment, and I thought it was onetime event. I went on with my life, until one day when I went to the bathroom and I had a lot of blood in my urine. I went back to my urologist, and he sent me for a CAT scan and discovered that I had a tumor in my urethra.

I traveled to New York from my home in Florida, and found a urologist who would be able to remove the tumor using laser surgery. I did that twice. But, unfortunately, on my third visit we found that the cancer had not only grown but had become much more aggressive. They told me that my prognosis was very poor. They said I had to do chemotherapy, but probably that will just arrest the cancer, and maybe only temporarily.
 

I went to a specialist at a hospital in Copenhagen. He said that the only way they can cure malignant melanoma is by surgery. “As long as we can use the knife, you can survive,” he said. So they surgically removed the area around the malignant melanoma and also a number of lymph nodes in the armpit and the groin. I was hospitalized for almost a month.

From 2007 to 2009, I went through four surgeries to remove cancer nodes in my lungs. In 2010, they told me that there was a further progression. At that time I was offered treatment with interferon and interleukin-2. The interferon/interleukin-2 treatment is a bastard. It means you are put into an artificial flu for one week with high fever. Then you have two weeks of rest before doing it all again. With that treatment, the cancer was reduced, but there were still traces of cancer left.

I learned I first had bladder cancer on February 7, 2015, when a tumor the size of a baseball was discovered in my bladder through an ultrasound.

Routine colonoscopy in 2016

I had just had a short haircut and was sitting on the steps in my house under a skylight playing with my one-and-a-half-year-old daughter when my wife looked down and noticed a spot on my scalp. So I went to a dermatologist who conducted a biopsy. Two days later I had the results and was immediately referred to the John Wayne Cancer Institute for treatment.

My name is Stephen Estrada. I live, work, and play in Denver, Colorado. I live with my partner of nearly 8 years, Kenley, and our two dogs Gretel and Joey. I tend to be more of a homebody since my diagnoses, but that suits us all just fine.
 
I was rushed into an emergency colon resection 4 days after my first CT scan showed a "cancer like mass." I was diagnosed with stage 4 colon cancer at the age of 28. With this diagnosis came the news that I also have a genetic condition known as Lynch Syndrome, which means I’m at an increased risk for many types of cancer.

After healing from surgery, I started a six month course of FOLFOX with Avastin. My tumor shrank enough at that point for me to receive a NanoKnife procedure. During that surgery I also underwent a stomach bypass, small intestine resection, mesenteric resection, gallbladder removal, as well as an intestinal rerouting. None of that was planned, so I was fairly shocked upon waking up.
 

In November 2014, I was in the hospital for an angiogram due to suspected arterial blockage. The angiogram revealed a double-blockage which required bypass surgery. At the same time, a blood test indicated extremely low hemoglobin. Follow-up tests, including a colonoscopy, discovered the tumor in the colon.

I had a mole that started growing, itching and burning. I couldn't see the physical changes, but reported it at my next doctor visit. Referred to a dermatologist who performed a biopsy. I got a call a week later with the news. 2 surgeries, 30 positive lymph nodes out of 80 removed. Completed radiation therapy, and radiosurgery. Now at T1a N3a M0, stage 4

I had the very typical Taxol-carboplatin chemotherapy regimen. I was treated locally in Virginia, but I sought out a second opinion at Johns Hopkins. They recommended that I also do what's called intraperitoneal chemotherapy, which is where they pump the chemo into your abdominal area in hopes that it will kill the cells that are in there. I had six treatments of that.
 
Later, I had another big surgery, and another round of chemo. I had a spot come back on my chest wall and another surgery for that but no chemo. So that was all between 2007 and 2011.

In 2009, I had just started with a new OB-GYN and she noticed that I had had some abnormal Paps over the years. She asked me if I ever had an ultrasound, and I hadn't. So she ordered the test for me and the results from the ultrasound showed that I had a mass. She referred me to a specialist and he recommended that I have a hysterectomy. He was originally just going to do the ovaries and the tubes, but I was already 57 years old, and kids were no longer in the picture, so I decided to go ahead with the full hysterectomy.

I was diagnosed with breast cancer in 2009. I was 51 years old and my youngest son (I have two boys) was 12. Because I was HER2 positive, I did chemo and a year of Herceptin. I was finished with my treatment in December of 2010 and started on the hormonal therapy tamoxifen (Nolvadex). The following May, we discovered that cancer had returned, and was in my liver. I was Stage 4.

Having a diagnosis that’s considered life-ending, I struggled to adjust, but amazingly, I did. You learn to see life in a different way when you know it is likely to be very short. Some of it is difficult. But some of it is beautiful, as you are able to make sure to say all the things you need to say to the people you love, and to really plan for your death.

In 2004, I was finishing up my Master’s in Elementary Education, and my fiancé Rob, now my husband, and I were planning out our lives together. He had accepted a job in Washington, D.C., and I was going to teach there in the fall. We rented an apartment and moved in. Then, after going to the doctor for what I thought was a bad case of bronchitis, we got the news that changed everything: I had stage 4 melanoma. I was 22. It seemed like my life was over.

They started me on high dose chemotherapy just a few days before the wedding.  Chemo was horrific. I was sick day in and day out. I spent that entire first year of marriage in a haze. The chemo made me unable to function and gave me crippling neuropathy. But even worse, the chemo didn’t work. So after that, I was given interleukin-2, which didn’t work for me either. The tumors continued to grow and the drug made my skin peel off. Both treatments left me feeling broken.

T.J. Sharpe was diagnosed with metastatic melanoma in 2012, just weeks after the birth of his second child. Not satisfied with the standard of care treatments offered to him, he and his family began exploring immunotherapy. Two clinical trials later, he is living a full life, now on maintenance Keytruda, devoting the bulk of his time to his family and to melanoma advocacy. T.J. writes a blog for philly.com called Patient 1.

I had this really funky mole on my leg that was elevated. It was hard as a rock and itchy. I thought it was a mosquito bite, but when I looked at it, I was like, "Oh God." It definitely looked out of the ordinary.

I got my diagnosis over the phone in August 2011. It was a surreal moment. Right away, I went into business mode and started scheduling doctor appointments. Some people fall apart right away. I don't; I fall apart later. I avoided telling my family for a while, but we eventually talked about it, and my mother kind of hijacked things and got it all taken care of for me. She was like, "No, we're going here. These are the best people." That's how we found Dr. Kirkwood and my surgeon, Dr. Edington.

About 10 years ago, I had a mole on my right temple. One day, I noticed a pimple had grown out of the mole. I'm looking at it in the mirror and I said, “That doesn't look too good.” I went to the doctor and he sent me to a specialist. They eventually operated and took it out and classified it as melanoma.

In January, 2014 I felt a lump deep under my skin on my left cheek. After the initial discovery I gave it a couple of days, then set an appointment with my G.P.. After a course of antibiotics I was referred to an ENT. Prior to seeing him I had an ultrasound and blood work. During our first meeting he confirmed a tumor on/in my Parotid Gland. He said "don't worry, 95% of these are benign but we still need to biopsy and remove it." 3/19/14 I had an appointment to get the results of the biopsy and to set a surgical date. During that appointment he gave us the news. The doctor essentially told us that it had most certainly already metastasized, and when my wife asked him if he was going to remove the tumor he said, "You don't understand, if he's got it there, he's got it all over the rest of his body. Taking that tumor would be a waste of time. This is what is going to kill him."

I’ve had many types of cancer. The very first time I was diagnosed, I was 39 years old. I had breast cancer, which was treated with had a mastectomy and chemotherapy. I did pretty well until 7 or 8 years ago, when they found ovarian cancer. I had a second mastectomy, and a kidney removed. A few months later, they found bladder cancer.

I was diagnosed October 1, 2012 with stage IV T cell Lymphoma. I remember the day this all started very clearly. I had been let off early from my job as a contractor (I’m also a minister) and was at home. I had been having some different symptoms, like sudden exhaustion, and the week before had been to the doctor. At exactly 2:45, my doctor called. He said, "Mr. Martin, you have lymphoma." I had never heard of lymphoma before.

So here I am, saying, "Okay, doc. What are we going to do? Do I need to come by there and pick up a prescription, and then come over and go to the pharmacist?" And before he replied, I heard myself say, "You need to ask the doctor what lymphoma is."

So I said, "Wait a minute. What is lymphoma?"
And he said, "Cancer."

And from the time that he said "cancer" it was like somebody put in me another room and closed the door. I couldn’t hear what he was saying. I was trying, but I couldn’t grasp everything.