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Growing up in New York, Pete lived a fairly traditional life. He knew firsthand what it was like to stay the course and make his family happy. He was a good student and son, became an Eagle Scout at 13 and later graduated from an Ivy League university. 

“For most people, and definitely for me, we live in a world of fitting in and adapting with the rest of society,” Pete, 81, says. “I did as most kids do, I embraced my family’s values as mine and wanted to be the best little boy in the world and meet the approval of others regardless.”

Pete found himself experiencing a similar feeling of what he terms “keeping calm and carrying on” later in his adulthood when he was diagnosed with chronic lymphocytic leukemia (CLL) — a type of blood cancer - at the age of 69. But this wasn’t the first time he came face to face with a life-altering event.

At 24, he married a woman named Jackie, and they had two children together and were living as a family in Asheville, North Carolina. Pete and Jackie cared deeply about each other and had a wonderful relationship with their kids, yet, they found themselves experiencing issues 13 years into their marriage. Pete needed to reset his course and separated from his wife to embrace a side of him he rarely accepted: Pete came out as a gay man.

“While in the closet, I knew instinctively how to pretend to be straight. It was similar to what my family and I did being Jewish in a very Christian community,” Pete says. “The parallels were clear: you can either be very conspicuous and defiant or you can keep your head down and fit in. I fit in well.” Pete moved to New York City and began to live the life he long dreamt of. Soon after, Pete met and fell in love with his now-husband of 33 years, Wes. “It was a bitter cold night, and I couldn’t get a cab, but knew I could find one outside the Plaza Hotel, where Wes had worked at the time. We literally met as we both went through revolving door,” Pete says. “It was the best door I ever walked through. I got lucky.”

During the time of his CLL diagnosis, Pete had Wes by his side. “It was scary, but I faced it with the love and support from Wes.”

The two were living a life full of travel and activity, making his diagnosis more of a shock because Pete had not experienced any symptoms aside from some fatigue while rock climbing on a trip in Patagonia, Argentina.

“Although the friends I was hiking with in Argentina were younger than me, some of them by a fair amount, I had always been able to keep up with them pretty well,” Pete says. “I hadn't felt the fatigue while hiking, but when we were climbing, I seemed to get out of breath much more readily than I had previously and more than I expected. In retrospect, I realized that was a warning sign, a symptom.  It was an ‘aha’ moment.”

Following his trip to Argentina, Pete went to see his doctor for a routine checkup and was told to see a hematologist oncologist after his blood work showed his white blood cell count was high. He was ultimately diagnosed with CLL.

CLL is one of the most common forms of leukemia in adults in the U.S.

 It’s characterized as a slow-growing blood cancer that most commonly arises from B cells, a type of white blood cell that originates in the bone marrow.

 For some people in early stages of the disease, CLL is asymptomatic; however, if the disease progresses, signs and symptoms may include night sweats, swollen lymph nodes, weight loss, fatigue, weakness, among others.

After receiving the diagnosis from his oncologist, Pete was told he could expect to live about 11 more years with CLL based on his individual health and age, and that he should  “watch and wait,” which is an approach sometimes used in slow-growing cancers when a patient and the health care team opt for no treatment but rather actively monitor the disease.  Pete and his doctor agreed he would only start treatment when symptoms started.

“It felt a bit strange to not be immediately proactive,” Pete said. But Pete continued on watch and wait for several years as his CLL presented no symptoms. Still, he conducted his own research to learn more about his disease to be fully informed of all of his options if his CLL were to progress.

Nine years after his diagnosis, Pete began to see a CLL specialist when his white blood cell count increased, and his platelet count decreased. His doctor recommended 

, (ibrutinib) which he is now taking once daily every morning. IMBRUVICA

 works differently than chemotherapy by blocking Bruton’s tyrosine kinase (BTK) signaling. This helps stop  B cells from surviving and multiplying and may slow the spread of CLL.

Pete and his doctor discussed the potential benefits and side effects of IMBRUVICA

, including some of the serious side effects that could occur while on treatment, such as bleeding, infections and heart rhythm problems, as well as some of the common side effects including diarrhea, tiredness, muscle and bone pain, rash, decrease of certain blood cell counts, nausea and bruising. 

Scroll down or click here to view the entire Side Effect Information and Uses

“I feel very fortunate with the success I’ve had with IMBRUVICA

,” Pete says. “At first, I experienced stomach issues, but those symptoms subsided. My doctor says I’m doing very well, and I’m happy to report that my doctor says I'm doing quite well.” However, responses may differ for other patients.

Pete believes in the value of leaning on others and coming together to share experiences and help other people who may be going through a similar journey.  About three years ago, Pete founded a local chapter for the CLL Society in San Francisco, where he and Wes now live.

“A number of people who are attracted to our support group are newly diagnosed, so generally what I've said to them is, ‘Stay positive, you can work with your healthcare team to discuss an appropriate treatment plan for you. There are encouraging options available that may work for you.’” Pete says. “Of course, every case is different, and we certainly acknowledge that, but on the other hand, people shouldn’t assume the worst. It's also an opportunity to share and to pick other people's brains and to learn from their own experience and their own research.”

When Pete recently celebrated his 80th birthday, he surpassed the 11 years his doctor once estimated he had left to live. “For some people, turning 80 might be a bit of a bummer, but for me it felt like an accomplishment,” he says. “It felt like I achieved a milestone or gotten over a hurdle.” Pete still sees his doctor for regular check-ups to continue to manage his disease.

Looking ahead, Pete would like to travel to Japan and Ireland with Wes. He also plans to continue his hobbies of going on walks and hiking.

“I consider myself to be pretty lucky,” Pete says. “Just continue to educate yourself, work closely with your healthcare team and aim to live life to the fullest.”

While this is Pete’s own experience with CLL, it is important to understand that each journey with this disease is different and patients should work closely with their healthcare teams to determine an appropriate plan for managing their CLL.

 (ibrutinib) is a prescription medicine used to treat adults with:

Chronic lymphocytic leukemia (CLL)/Small lymphocytic lymphoma (SLL)

Chronic lymphocytic leukemia (CLL)/Small lymphocytic lymphoma (SLL) with 17p deletion

, tell your healthcare provider about all of your medical conditions, including if you:

have had recent surgery or plan to have surgery. Your healthcare provider may stop IMBRUVICA

 for any planned medical, surgical, or dental procedure.

have or had heart rhythm problems, smoke, or have a medical condition that increases your risk of heart disease, such as high blood pressure, high cholesterol, or diabetes.

are pregnant or plan to become pregnant. IMBRUVICA

 can harm your unborn baby. If you are able to become pregnant, your healthcare provider will do a pregnancy test before starting treatment with IMBRUVICA

. Tell your healthcare provider if you are pregnant or think you may be pregnant during treatment with IMBRUVICA

who are able to become pregnant should use effective birth control (contraception) during treatment with IMBRUVICA

with female partners who are able to become pregnant

should use effective birth control, such as condoms, during treatment with IMBRUVICA

are breastfeeding or plan to breastfeed.  Do not breastfeed during treatment with IMBRUVICA

Tell your healthcare provider about all the medicines you take,

 including prescription and over-the-counter medicines, vitamins, and herbal supplements. Taking IMBRUVICA

 with certain other medicines may affect how IMBRUVICA

exactly as your healthcare provider tells you to take it.

 capsules or tablets whole with a glass of water.

 take it as soon as you remember on the same day. Take your next dose of IMBRUVICA

 at your regular time on the next day. Do not take extra doses of IMBRUVICA

 call your healthcare provider or go to the nearest hospital emergency room right away.

What should I avoid while taking IMBRUVICA

You should not drink grapefruit juice, eat grapefruit, or eat Seville oranges (often used in marmalades) during treatment with IMBRUVICA

. These products may increase the amount of IMBRUVICA

What are the possible side effects of IMBRUVICA

 may cause serious side effects, including:

, and can also be serious and may lead to death. Your risk of bleeding may increase if you are also taking a blood thinner medicine. Tell your healthcare provider if you have any signs of bleeding, including: blood in your stools or black stools (looks like tar), pink or brown urine, unexpected bleeding, or bleeding that is severe or that you cannot control, vomit blood or vomit looks like coffee grounds, cough up blood or blood clots, increased bruising, dizziness, weakness, confusion, change in your speech, or a headache that lasts a long time or severe headache. 

 can happen during treatment with IMBRUVICA

.  These infections can be serious and may lead to death. Tell your healthcare provider right away if you have fever, chills, weakness, confusion, or other signs or symptoms of an infection during treatment with IMBRUVICA

Decreased blood counts (white blood cells, platelets, and red blood cells) are common with IMBRUVICA

, but can also be severe.  Your healthcare provider should do monthly blood tests to check your blood counts.

Heart rhythm problems (ventricular arrhythmias, atrial fibrillation and atrial flutter).  

Serious heart rhythm problems and death have happened in people treated with IMBRUVICA

, especially in people who have an increased risk for heart disease, have an infection, or who have had heart rhythm problems in the past. Tell your healthcare provider if you get any symptoms of heart rhythm problems, such as feeling as if your heart is beating fast and irregular, lightheadedness, dizziness, shortness of breath, chest discomfort, or you faint.  If you develop any of these symptoms, your healthcare provider may do a test to check your heart (ECG) and may change your IMBRUVICA

 New or worsening high blood pressure has happened in people treated with IMBRUVICA

. Your healthcare provider may start you on blood pressure medicine or change current medicines to treat your blood pressure.

New cancers have happened during treatment with IMBRUVICA

, including cancers of the skin or other organs.

TLS is caused by the fast breakdown of cancer cells. TLS can cause kidney failure and the need for dialysis treatment, abnormal heart rhythm, seizure, and sometimes death. Your healthcare provider may do blood tests to check you for TLS.

The most common side effects of IMBRUVICA

 in adults with B-cell malignancies (MCL, CLL/SLL, WM and MZL) include:

Articles

CLL patient shares his experience with the disease and the importance of aiming to live his life to the fullest despite his diagnosis.

Keeping Calm and Carrying on With CLL

like cholangiocarcinoma to follow in lung cancer’s footsteps.

An oncologist and researcher who is investigating a medication to treat the rare type of cancer that affects the bile ducts, which carry digestive fluid from the liver to the intestines, Seery wants to see patients with cholangiocarcinoma benefit from a growing array of targeted drugs that move from clinical trials to approval by the Food and Drug Administration (FDA), just as lung cancer has.

She imagines a time when, instead of having few therapeutic options, patients with advanced cholangiocarcinoma will choose from a broad selection of targeted agents and be able to switch to another if one stops working.

Seery, who specializes in gastrointestinal cancers at the Chan Soon-Shiong Institute for Medicine in California, is furthering that vision as an investigator in the phase 3 PROOF trial. The study is testing the experimental drug infigratinib as a first-line treatment in patients with inoperable or metastatic cholangiocarcinoma that carries an alteration in the fibroblast growth factor receptor 2 (FGFR2) gene. The drug inhibits the activity of the cancer-driving protein FGFR2, which is produced when that gene and another one fuse or switch places.

Infigratinib recently received fast-track designation from the FDA, which means its development and review will be expedited because it could potentially fill an unmet need for people with a serious condition.

“We had little progress in cholangiocarcinoma for quite some time, and every patient was treated with (the chemotherapies) gemcitabine and cisplatin for the past 10 years,” Seery says. “Finally, it’s coming to light that there are (targeted) treatments that are a possibility for these patients. A trial demonstrated that up to 40% of patients have a genetic mutation that could make them eligible for targeted therapy clinical trials.

“Cholangiocarcinoma is starting to experience the same kinds of advances that lung cancer underwent 10 years ago, when the first of many effective targeted therapies began to emerge as the genetic aberrations that drive lung cancer became better understood. By treating patients according to their specific mutations, our goal is to help them live longer and maintain a good quality of life.”

FGFR alterations occur across a spectrum of cancer types, including cholangiocarcinoma, bladder, breast, endometrial, lung, colorectal and pancreatic. About 7% of cancer cases express FGFR mutations, and 19% of those are specifically FGFR2 alterations, Seery says.

In cholangiocarcinoma, FGFR2 alterations are more common, occurring in 15%-20% of cases. “It’s the most frequent mutation that we see in intrahepatic cholangiocarcinoma,” Seery says. That category of the disease occurs in the small bile ducts inside the liver.

Patients with the alteration make up a unique subtype of those with cholangiocarcinoma, according to Seery. “Typically, we do see the alteration in an earlier stage of the disease, and usually a higher proportion of the patients are younger. It is seen in Caucasians more than in Asians,” she says.

Studies are being conducted to determine if infigratinib will slow the proliferation of, or even kill, tumor cells in this population of patients.

Specifically, in those who have cholangiocarcinoma with FGFR2 alterations, the PROOF trial (NCT03773302) is comparing the effectiveness of infigratinib versus the standard treatment (a pairing of gemcitabine and cisplatin). Twice as many patients will be assigned to infigratinib compared with chemo- therapy. Already enrolling and treating patients, the trial includes 36 sites throughout the United States.

The main goal of the study is to determine progression- free survival, meaning how long patients stay free of disease progression, and to determine whether that period of time lasts longer with infigratinib or chemotherapy. The trial will also test whether patients live longer while taking infigratinib versus chemotherapy.

Participants will be monitored every eight weeks with CT scans or MRIs to check whether their cancer has grown, spread, shrunk or stayed static. If the cancer progresses, patients who were being treated with chemotherapy can switch to receive infigratinib instead and remain in the study, Seery says.

Known side effects of the experimental drug include elevated phosphorous levels in the blood; fatigue; inflammation of the lips and mouth; hair loss and constipation.

To participate, patients should be in fairly good health with the exception of their cancer and have had no previous systemic or targeted treatment for cholangiocarcinoma. Those interested can get more information by visiting qedprooftrial.com.

Because there is currently no curative treatment for this population, Seery says, stable disease and improving or maintaining quality of life are the most important goals in caring for patients with cholangiocarcinoma.

In a previous research study, infigratinib generated a 6.8-month progression-free survival (even after patients had been on multiple other therapies for their cholangiocarcinoma). Just over 84% of participants experienced either a partial response or stable disease.

These results encouraged researchers to start the PROOF study to see if using infigratinib before any other treatments could extend progression-free survival beyond the eight months demonstrated with chemotherapy.

Giving the two treatments back-to-back could keep patients’ disease stable longer, Seery says.

Infigratinib is one of about five FGFR inhibitors in development, and Seery expects it to fit into the field well, perhaps functioning as a first treatment for advanced disease while other agents will treat cholangiocarcinoma that has developed resistance to the drug.

Cholangiocarcinoma can also be driven by IDH, BRAF or MET mutations or ERBB2 amplifications, all of which may be treatable with other targeted drugs, Seery says. That is why patients should insist that their tumors undergo molecular testing, she says: Without it, they will not know if they might benefit from infigratinib or any other targeted drug.

“It’s the most important thing that a patient can do,” she says of the testing. “Right now, we’re trying to get word out so that everyone is aware there are treatments based on these mutations. Not every physician is aware of the mutations. If a patient knows and says something, maybe it will spark the clinicians to order the test.”

Researchers hope the new PROOF trial will show that infigratinib, a targeted drug, will expand options in treating advanced cholangiocarcinoma. Patients are enrolling now.

Building PROOF In Advanced Cholangiocarcinoma

 For anyone who's heard the devastating news of a cancer diagnosis, Rod Gilmore’s reaction may seem familiar. In 2016, the college football analyst and lawyer went in for his annual physical. Other than the fact his distance running had slowed slightly, there were no signs anything was wrong. But about a week later, Gilmore’s physician called him back in for an urgent meeting.

“You have cancer,” he told Gilmore. “Your life is going to change dramatically.”

Gilmore was diagnosed with a blood cancer called multiple myeloma.

Not only was the news a complete shock, but the uncertainty of what that meant for his life was overwhelming. He worried about how to tell his wife, Marie, of 31 years and their two adult children. He had no idea if he could continue his busy professional life, working both as a lawyer and as a college football analyst and broadcaster with a major sports network.

When Gilmore did gather up the nerve to tell Marie, she looked at him, and said, “It’s going to be ok. Let’s get to work.”

Gilmore did just that. “I began learning all I could to better understand the disease and get a sense of what I might expect,” he said.

Multiple myeloma is a cancer of the plasma cells, a type of white blood cell that originates in the bone marrow.

 It typically affects people who are at least 65 years old, and African Americans are more than twice as likely to be diagnosed with the disease as white Americans.

Unlike some cancers, multiple myeloma and its treatment are characterized by cycles of remission and relapse, which means patients can be on and off different treatments over several years.

 This makes having a plan and a support team critical to navigating this complex disease over time.

While he notes that every patient is different and they should talk to their doctors before making decisions about activity level and diet, Gilmore says for him that meant learning about the disease and understanding what questions to ask his healthcare team in order to have an open and honest dialogue about his care. He also found that creating a routine, such as exercising regularly and maintaining a healthy diet, helped him both physically and mentally.

 Having that plan has made all the difference in helping Gilmore and his family cope. It made such a difference, in fact, he is now sharing that message with others. He’s teamed up with Amgen Oncology as part of the Myeloma MVP team. Myeloma MVP is a national initiative that aims to help patients communicate with their doctor and support team and develop a personal strategy or “

"A multiple myeloma diagnosis can be overwhelming. But developing a personal strategy can help. I encourage anyone living with multiple myeloma to use the MVP guide in the link below to develop their plan today and to visit 

This content is sponsored by Amgen and Rod Gilmore is a paid spokesperson. 

American Cancer Society. About Multiple Myeloma. https://www.cancer.org/cancer/multiple-myeloma/about.html. Accessed on November 11, 2019.

American Cancer Society. Risk Factors for Multiple Myeloma. https://www.cancer.org/cancer/multiple-myeloma/causes-risks-prevention/risk-factors.html. Accessed on November 11, 2019.

Jakubowiak A. Management Strategies for relapsed/refractory multiple myeloma: current clinical perspectives. 

Multiple Myeloma Research Foundation. What is Multiple Myeloma? https://themmrf.org/multiple- myeloma/what-is-multiple-myeloma/. Accessed on November 11, 2019.

Patient Rod Gilmore shares his experience with multiple myeloma and the importance of creating a strategy to manage the disease.

Creating a Game Plan to Manage Multiple Myeloma

The comparison of trastuzumab deruxtecan (DS-8201a) with standard chemotherapy is examined for patients with low levels of HER2 metastatic breast cancer and final thoughts on the future treatment landscape of HER2+ breast cancer.

Author | Sponsored Content

Keeping Calm and Carrying on With CLL

Building PROOF In Advanced Cholangiocarcinoma

Creating a Game Plan to Manage Multiple Myeloma

HER2+ mBC: DESTINY-Breast04 Trial