Immunotherapy

There is Hope

Todd Seals was diagnosed with Stage IV prostate cancer at just 42 years old. After deciding not to let cancer rule his life, he has committed to living an active lifestyle and being an inspiration to others. He encourages others to advocate for themselves, and, most importantly, to live life every day with gusto.

 

During a doctor’s visit for pneumonia, an X-ray of my lungs showed a mass. I was told, “It’s probably a pulmonary nodule. You should probably get that checked out.” I should have gotten it checked, but I didn’t.

I went to my primary care doctor when symptoms became serious. I developed pain and began to urinate blood. A urine sample was taken, and I was told that it tested positive for blood. “Well, duh,” I thought. I told him about the chest X-ray. He took a look and discovered that my lung was covered in tumors. He said, “I’m very scared for you.” I was scared, too.

The following weeks were a blur of blood work, bone scans, CTs and drinking contrast fluids while my symptoms worsened. I was in extreme pain and couldn’t sleep at night. My PSA was more than 3200. A biopsy was taken of my prostate. It was the worst thing that I experienced in my life. The local anesthetic did nothing to ease the pain, and the two young, female students who were present for observation made it nearly unbearable. I was diagnosed with Stage IV prostate cancer that had spread to my lungs. I had a Gleason score of 7 and a prognosis of one year.

Discovering that I had cancer was a low point for me. I had made many mistakes in my life that led to a strained relationship with family, drug addiction and homelessness. At the time of my diagnosis, I had been repairing those relationships with loved ones, been clean for nine months and had met the love of my life. I was getting my life back in order and felt ripped off. I blamed God.

I opened my Bible and read the first page that it opened to. The verse was Psalm 103:2-3. It said that "my soul will praise the Lord and not forget that He forgives all sins and heals all diseases." It became my mantra and comforted me during those painful, sleepless nights.

I was referred to an oncologist who was hopeful that he could treat the disease. This made me feel hopeful as well. Within a year of being diagnosed, I married my wife, and that night I promised her 30 years of marriage.

I started a hormone therapy drug that worked well for five years. My PSA rose around the same time my oncologist retired. He was a fantastic doctor. I was nervous about transitioning to a new oncologist, so he referred me to someone he trusted.

The new oncologist gave me a three-month prognosis, so I promptly fired him. He didn’t inspire the same hope that my last oncologist did, and I didn’t feel like he understood the gravity of the 30-year promise I’d made to my wife.

I refused to let his negativity get to me. I became my own advocate and educated myself. I spent hours poring over information about clinical trials at the National Cancer Institute in Washington and learned that a clinical trial recently ended with an FDA approval for an immunotherapy treatment for prostate cancer. It worked as a cancer vaccine and used your own cells to create a vaccine to kill your cancer cells. I knew that I wanted to try the new treatment, but my biggest hurdle was obtaining a prescription.

I went back to the oncologist I’d fired and requested the treatment but was denied because of my lung metastases. The oncologist read in an article from a medical journal that this particular immunotherapy treatment should not be given to patients with lung metastases. He offered other treatment options, which I declined. I fought back, and it got heated. (On one phone call, there might have even been some screaming.) It ended, however, in an appeal process with the insurance company.

During the months that it took for the appeal to process, my PSA rose and I began to feel sick. My wife and I decided to go directly to an expert in Las Vegas who worked for the pharmaceutical company that made the immunotherapy drug. Just before the trip, we were told that I’d won the appeal. Our trip to Vegas became a celebration. As part of the ruling, the oncologist who denied my request for a prescription had to follow a treatment plan as ordered by the doctor in Las Vegas. I finally received immunotherapy.

The only side effect that I experienced with immunotherapy was that I slept for 24 hours after my first infusion. It was much needed sleep, so I thought it was phenomenal. Immunotherapy gave me 14 side effect-free, progression-free months. After that time, I switched back to hormone therapy.

Hormone therapy resulted in a lot of side effects, including erectile dysfunction. As newlyweds, this was the most difficult one. Prescription medications helped, and I am happy to report that they are now rarely needed. I learned to focus on the love that I have for my wife and the emotional side of intimacy, and the physical part has responded. It isn’t the same as it once was, but I have adjusted to a new normal and am happy.

Overall, this has been a fantastic ride. I wasted my life prior to diagnosis. I never even took a vacation. I have since become a better husband, father, friend and kid to my mom. I have travelled all over the country, spoken at events and have become a beacon of hope to others. My story is one of hope, and if I can inspire hope in other patients, I have done my job.

The best advice I received was from another patient: “Life is going to end, and cancer is scary. There is hope, there is hope, there is hope.” Just because someone says you have cancer doesn’t mean that you are going to die. I have written a blog called Living with Prostate Cancer that is about living life. Cancer is just part of the story. Start living your life, and treasure today.

 


Immunotherapy Offers Hope to Melanoma Survivor

Jane McNee, 64, was surprised when her melanoma came back six years after her original diagnosis. This time, it had metastasized to her liver and ninth rib. Her doctor recommended immunotherapy, and the treatment has been successful. The spots on her liver and rib are significantly smaller since treatment began, and she has had only mild side effects. She is enjoying life with her two children and two grandchildren.

 

One day in July 2008, I noticed a little spot on my right collarbone as I was putting on my makeup. I didn’t worry too much about it until it started to change over time and began to look like a blister. I didn’t have a dermatologist, so I found one and had it checked nearly a year later in May 2009.

After testing was done, the doctor looked at the results and said the spot was melanoma in situ. I had surgery to remove the lesion. When the biopsy determined that the margins were not clean, I had a second surgery to remove a lymph node. To follow up, I went to the dermatologist every three months and an oncologist, who did regular chest X-rays.

In September 2014, five years after being free of melanoma, my family and I celebrated that critical milestone. However, on July 4, 2015, I was at a weekend barbeque and suddenly I got a sharp pain under my breast. I called my family doctor and made an appointment for Monday. The doctor did a chest X-ray and looked at my abdomen. Then he ordered a CAT scan and more blood tests.

The results came back, and he told me that I had Stage IV metastatic melanoma that had spread to my liver and ninth rib. The sharp pain in my rib was the only indication I had that something was wrong. I’m glad now that it happened, so I could be diagnosed and start treatment, but at the time, I was completely shocked. I cried for days. I was so scared for my children, even though they were older, and for my grandchildren. I became depressed and couldn’t stop crying, so the doctors put me on an antidepressant, which helped tremendously.

My doctor recommended immunotherapy, which I had never heard of before. I was scared, but when the doctor told me I’d have fewer side effects and wouldn’t lose my hair, I felt better. I would have done anything to make the cancer go away. By the end of July 2015, I started receiving infusions of an immunotherapy drug every three weeks. They checked the status of my cancer with computed tomography (CT). As of August 2016, my scans still showed something on my liver and rib, but my doctor told me that they may never fully disappear. With immunotherapy, scar tissue can be left behind, and it can be easily confused with active cancer. The tumor may be “dead,” which is what I hope for, but we will continue to monitor it with scans during the rest of my treatment.

I’ve barely had any side effects with this treatment. It’s been amazing. I’ve not had one sick day or any colds since I started the immunotherapy. The only side effect I had was an itchy, pimply rash, which lasted for about six months. It showed up on my back, arms and chest. The doctor said it was a mild rash and prescribed a corticosteroid cream to help with the itching.

I am glad that I received prompt medical attention after the pain in my ribs, but I did seek other opinions just to be safe. Don’t be afraid to get a second or third opinion about your diagnosis. I switched doctors after only two treatments. I found a doctor I felt more confident with, who gave me a stronger sense of hope. It’s important to do what feels right for you.

Everyone needs a support group. I didn’t tell a lot of people about my melanoma or my treatment. I didn’t want to be defined by melanoma. I could not have gone through this without the love and support of my family, especially my children, John and Denise. My two brothers and a sister rounded out my core group of supporters. I never went to a doctor’s appointment or treatment without one of my two children. They made sure I was never by myself.

Communicate to those closest to you to let them know what you need. Don’t be afraid to ask for what you need. Keep busy and do things if you’re feeling up to it. I didn’t look sick, so I didn’t want to act sick. I just kept going, and that worked for me. Having and treating cancer is only one part of your life.

Look for hope. I had several people add me to their prayer chains, which gave me so much hope. Immunotherapy gave me hope as well. I feel blessed that this treatment is available now.

 


Bladder cancer survivor gains appreciation and perspective

Bladder cancer survivor, father, CPA and Vietnam veteran Mike Urbom is a retiree who stays active, traveling, skiing and hiking. He appreciates the small things now more than ever, after his cancer journey taught him how important it is to make time for what you really enjoy in life.

 

I knew it wasn’t normal when I saw blood in my urine. I went to see my doctor, who put a scope into my bladder. It was pretty easy to diagnose after that.

I had an idea of what it was before I was given my official diagnosis. I’d been doing some research on the symptoms and happened across a cancer forum where a woman told me I had exactly the same symptoms as her mother. I was 55 and had high-grade, superficial transitional cell carcinoma (TCC) of the bladder. A CT scan immediately following the scope confirmed I also had tumors in my right kidney and right ureter.

I didn’t get a second opinion right away. My urologist was very informative, and I could understand what he was telling me. The cancer in the bladder wasn’t invasive; it hadn’t gone into the muscle. He suggested a transurethral resection of the bladder (TURB) to scrape the superficial tumors off the bladder wall. I was in the hospital for three days. This surgery was followed by an instillation of chemotherapy injected directly into my bladder.

I then had a second surgery to remove the kidney and ureter and was in the hospital for four days. I tried to tell people not to visit until I got home because I knew how I’d feel, but they came anyway—and I appreciated the support. After the surgeries, I received bacillus Calmette-Guerin (BCG) with interferon alfa (Intron A), a type of immunotherapy. It was injected directly into my bladder, just like the chemo. It seemed like I had a lot of treatments over the years, but my doctor followed all of the protocol for that treatment regimen. The maintenance therapy finally ended a couple of years ago.

For quite some time, I didn’t have a lot of strength and felt pretty uncomfortable. Physically, you’re not going to be up to your old self for a while. And getting poisons pumped into your bladder burns a bit; it might throw some people for a loop. I haven’t had any noticeable, lasting effects, though. I do get the occasional muscle cramp in my side where the incision was, but beyond that I feel fine. As for follow-up care, because my doctor told me my remaining kidney functions at around 50 percent, I underwent an annual kidney and bladder scope for several years to be sure there was no recurrence. Unfortunately, I couldn’t have PET scans because the contrast medium could damage my remaining kidney. It’s still functioning, and I plan to keep it that way.

I’ve stuck with my doctor all these years because he was always very open to talking about other options. He actually helped me coordinate a visit with another doctor after surgery for another opinion. That doc told me, “The bladder will come out.” At first it made me question the procedures I’d already had done. But I haven’t had the need to remove my bladder yet, and it’s been 10 years. I’m always aware the cancer could return, but I enjoy every day as much as I can and try not to worry. For a while it might be like a record playing over and over in your head, but eventually it’ll subside. If it doesn’t, I definitely recommend talking to someone.

When I had symptoms – and after the official diagnosis – I did a lot of self-educating. One of the most helpful sites I found was www.acor.org (Association of Cancer Online Resources). They connected me with forums and research I found extremely helpful. I firmly believe that you’re in charge of your own education. You have to ask the questions, look for the answers and do your research. If you find yourself overwhelmed by all of the information available, shut it down for a while. You may have to take a step back and sift out what it is that you want to know because there are many different layers of information.

When you visit the doctor, take notes. I recommend bringing someone along to do the note taking—preferably someone who will also pursue the questions because you’ll be a little bit dazed. Also, find other survivors! They can tell you firsthand what they’ve been through and how they coped with it. Finally, leave room in your life for the small things. For me, those are the ski trips I try to take every year now, and being able to volunteer at the Komen 3-Day walk in the Twin Cities each summer. They often matter the most but are the easiest to overlook when you’re in the middle of a busy work schedule or raising a family.

 

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