Tag: non-small cell lung cancer

Talking About Your Non-Small-Cell Lung Cancer Diagnosis
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Finding out that you have non-small-cell lung cancer (NSCLC) is often overwhelming. And so is telling others about your diagnosis.

You may worry how others will react. You may not want your friends and family to worry or to treat you differently, says Jacob Sands, MD, lung cancer specialist at Dana-Farber Cancer Institute and spokesperson for the American Lung Association.

But talking about it is important. Your friends and family can offer the support you need, such as a shoulder to lean on, a ride to the doctor’s office, or extra pair of hands at home.

So how do you let people know? There’s no one right way. But the following steps may help the conversation go easier for you and your loved ones.
1. Decide Who You Want to Tell

You don’t have to tell everyone right away. It may help to first write down everyone you want to notify and when you want to tell them. “For me, it was like the layers of an onion,” says Terri Conneran, who was diagnosed with NSCLC in 2017. “I wanted to tell my family first, then my closest friends, and so on.” Your list may include:

Spouse or partner. They’re often the first person you’ll want to tell. In many cases, your partner is your support system and caregiver when you undergo treatments.

Kids and grandkids. They can sense when something’s wrong, so it’s important to tell them the truth. “I was 13 when my dad passed of lung cancer,” says Jill Feldman, who was diagnosed with NSCLC in 2009. “From my experience, I knew that I had to be open and honest with my kids, too.”

Friends and family. They can also offer support and a sense of community.

Employers and co-workers. At some point, you may need time off or schedule changes. Keep in mind that federal law prohibits them from discriminating against lung cancer patients. You’ll need to talk with someone in your human resources department.
2. Consider How You Want to Break the News

When sharing your diagnosis in person, you’ll want to find a quiet, private place to speak openly. You may want to have a loved one, such as your spouse, with you for support.

In many cases, you may not have the time, energy, or desire to talk to everyone one-on-one. You can also tell people:

In a group. Just make sure everyone’s there before you begin. “Midway through telling my close-knit Bible study group, someone walked in and derailed the conversation,” says Conneran.

Through a loved one. Ask that a trusted person tell others. Let them know what and how much you want to share.

By email, text, or a website. You can keep people updated through email or text. Or set up a website, such as CaringBridge. “I sent an email to the parents of my kids’ friends so there wouldn’t be any misinformation that would get back to them,” says Feldman. Include how you’d like people to respond; you may prefer not to get calls. Or say that you aren’t able to respond to everyone individually.
3. Share Your Diagnosis

It’s often hard telling others about your diagnosis, but the following steps can help. You may also want to consult your doctor, therapist, social worker, or child’s pediatrician for advice.

Make sure you understand your diagnosis well. People will ask questions about your cancer. You should be able to tell people if your cancer is curable and what the goals are for your treatment, says Sands.

Decide how much you want to share. You don’t have to tell everyone everything. Think about what information you want to disclose and how you’ll respond if someone brings up a touchy topic, says Win Boerckel, lung cancer program coordinator for CancerCare. You can say, “I know you’ll understand that I’m uncomfortable with that right now.”

Tailor your approach. You know your loved ones best, so you can anticipate how the talk may go. For Conneran, she knew that the conversation would go differently with each of her adult kids. “My son is an engineer with a technical mind. He wanted to know every detail about my disease and treatment plan,” she says. “But my daughter is more emotional. She wanted reassurance that I would be OK.”

Spell out what support you need. Most people want to lend a hand, but they don’t know where to start. Tell them what you need, such as someone to walk your dog or a friend you can call at any hour. You can also appoint a loved one to handle requests to help.

Have information and resources ready. Chances are you won’t be able to answer every question. Have a pen and paper ready so you can keep a list of questions that you want to ask your health care team. You can also refer them to a support group or website for more information, such as the Go2 Foundation for Lung Cancer, American Lung Association, and Lung Cancer Foundation of America.

Seek feedback. Check in to make sure that they understand what you’re saying and ask if they have any questions. “You want to make sure you’re on the same page,” says Boerckel.
4. Be Ready for Any Reaction

People react to cancer news in different ways, and their responses may catch you off guard. Some people will want to help right away, while others may need time.

With lung cancer, there’s also stigma attached to the disease. “People will say, ‘did you smoke?’ or ‘I didn’t know you smoked,’” says Feldman. “It feels like shame and blame, and it’s stressful.” Have a response ready, such as, “It doesn’t matter how I got cancer; I need your support right now.”

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December 14, 2022
NSCLC: Advances in Treatment
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Doctors once thought non-small-cell lung cancer (NSCLC) was one disease. Most people got the same treatment — chemotherapy (chemo) — especially if their cancer had spread to other parts of the body.

Now, doctors know there are many different types of NSCLC, with “more coming down the pike,” says Nathan Pennell, MD, a medical oncologist specializing in thoracic cancer at the Cleveland Clinic’s Taussig Cancer Institute.

That means treatment plans are no longer once-size-fits-all. Instead, treatments like targeted therapies and immunotherapy are tailored to each person’s tumor.
Targeted Therapies

Some cancer cells have gene changes (also called mutations) that help them grow and spread. The goal of several targeted therapies is to block those changes. The FDA has approved medicines to treat eleven different gene mutations that can drive NSCLC:

EGFR

ALK

BRAF

ROS1

RET

MET

KRAS

PIK3CA

HER2

NTRK

MEK1

One drug targets the growth of tumors on blood vessels:

Epidermal growth factor receptor — or EGFR — is the most common. It’s a protein on the surface of cells that helps them grow and divide. If you have too much EGFR, your cells grow faster than normal. Medicines called EGFR inhibitors stop this growth.
Karen Reckamp, MD, co-directs the lung cancer and thoracic oncology program at City of Hope in Duarte, CA. She says targeted therapy has completely changed the way doctors manage lung cancer. Now, before you start treatment for advanced NSCLC, you’re likely to have genetic testing to see if you have a mutation that might help guide your treatment.

Reckamp says this new way of doing things has changed the game for many people with advanced NSCLC.

“We don’t talk about a cure,” Reckamp says. “But the tumor shrinks, people feel better, go back to work, and have a better quality of life.”

Targeted therapies also have drawbacks. Some only work for the small number of people who have gene mutations that respond to a certain targeted therapy. About 15% of people with lung cancer have EGFR-positive lung cancer. The numbers are much smaller for other gene changes.
The medicines also have side effects, like:

Skin rash

Diarrhea

Liver damage

Bone marrow problems
Reckamp says these usually aren’t as severe as side effects from chemotherapy.

“For most people, the side effects are pretty tolerable, and they do pretty well.”

Another problem is that targeted medicines often stop working, eventually.

“Cancer cells find ways to survive and overcome the toxic treatments we’re giving them,” Reckamp says. “When that happens, you have to try a different treatment.”

Still, she says targeted therapies have greatly improved the odds for people with NSCLC.

“With chemotherapy alone, [extending life] by 1 year was as good as we could get. Now, with these therapies in addition to chemo, it’s not uncommon for patients to live 2, or even 5 years.”

Immunotherapy

Your immune system normally destroys cancer cells. But tumor cells are sneaky and can find ways to evade your body’s best defenses. If you have NSCLC, some cancer cells may churn out a protein called PD-L1. It attaches to another protein, PD-1, on important immune T cells. This is called an immune checkpoint, and it tells your T cells to leave the tumor alone.

One way to get around this is with medicines called checkpoint inhibitors. They prevent PD-L1 and PD-1 from getting together. This unleashes your immune system, so it’ll be at full power against cancer cells. But healthy cells get caught in the crossfire.

“Immunotherapy can cause inflammation anywhere in your body from head to toe,” Reckamp says. “When your immune system never turns off, you can get something resembling an autoimmune disease like rheumatoid arthritis. Or you can have problems with your thyroid, liver, bladder, kidneys, and heart.

“And this can happen anytime — even after you’ve stopped treatment. But most symptoms can be well-controlled with high-dose steroids.”

Your doctor won’t suggest immunotherapy unless your tumor tests positive for high levels of PD-L1. The test isn’t always correct, though, and some tumors that test positive for PD-L1 may not respond to immunotherapy.

Still, Reckamp says immunotherapy is a better choice than chemo for most people who have it, despite the severe side effects and hefty price tag. It may even keep working after you stop taking it.
In the Pipeline

Reckamp says to look for improvements in targeted medicines and smarter drugs that can outwit and outlast cancer cells.

“There are lots of clinical trials focused on overcoming resistance to targeted medicines and immunotherapy, and combining these with chemotherapy to improve not just the length of a [person’s] life, but also the quality,” she says.

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December 14, 2022
NSCLC: Advances in Treatment

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NSCLC: Advances in Treatment

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December 14, 2022
NSCLC: When You Need More Than One Treatment

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NSCLC: When You Need More Than One Treatment

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December 14, 2022
NSCLC: When You Need More Than One Treatment
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Standard chemotherapy (chemo) was once the only treatment for advanced non-small-cell lung cancer (NSCLC). Now, you’re likely to get chemo plus a targeted medicine or immunotherapy, says Karen Reckamp, MD, co-director of the lung cancer and thoracic oncology program at City of Hope in Duarte, CA.

She says most people need more than one therapy, and often, they get all three at some time during their treatment. Combined treatments may work better because they attack cancer in different ways. And while they aren’t likely to cure advanced NSCLC, they may help you live longer with fewer symptoms.

Targeted Therapies

These block gene changes that cause tumors to grow and spread. The meds are more precise in targeting tumors than chemo, so side effects may not be as tough to deal with.

The problem is they often work for a while and then stop. This may be because the gene changes again, so it’s no longer a good target. Or, cancer might find a way around the therapy. Either way, you’ll probably need to add another medicine — usually chemo or a different targeted drug.

Immunotherapy

This treatment works in a different way. It triggers your immune system to attack your cancer. If your tumor has a high level of the protein PD-L1, immunotherapy medicines called checkpoint inhibitors may be your best treatment. These often work better when combined with chemo.

You May Still Need Chemo

If you don’t have the PD-L1 protein or a gene target, immunotherapy plus chemo is likely to be your main treatment. Reckamp says that fact disappoints some people.

“But we’re not at the point where we can do without [chemo],” she says. “In an era where we have all these new therapies, chemo is still helpful and will be part of most people’s treatment.”

That’s because chemotherapy can mop up cancer cells that other treatments leave behind.

“Metastatic cancer has spread through the lymph and blood to other places in the body,” Reckamp says. “That’s billions of cells. There’s always some cancer left, no matter what the treatment.”
Dealing With Side Effects

Cancer medicines can have serious side effects. What happens when you get two at the same time, or one right after the other? It can be tough, Reckamp says, especially since therapies can cause so many different problems.

For example, platinum-based chemo — the kind used for advanced NSCLC — damages all your fast-growing cells, even the healthy ones. Common side effects are:

Nausea

Diarrhea

Hair loss

Anemia

Bleeding

Chemo also can cause liver and kidney damage. If your side effects are severe, you may need a lower dose, or to stop treatment completely. Reckamp says many people can predict how they’re going to feel on certain days and plan around it. And since chemo is given in cycles, you have a chance to rest during the breaks.

You may not get a break from certain targeted medicine, though. Many targeted medicines are taken every day. That makes you more likely to have constant, but manageable symptoms, like rashes and diarrhea.

“You might have one really bad day of diarrhea with chemo and mild diarrhea every day with a targeted therapy,” Reckamp says.
Targeted medicines usually won’t make you as tired as chemo. Other side effects are usually easier on your body, too, but they still need to be dealt with.

“All these drugs are attacking cancer, so there is a level of not feeling like yourself,” Reckamp says. “Most people get used to that feeling. When they stop treatment, they remember what they’re supposed to feel like.”

What about side effects from immunotherapy, which can be pretty unpredictable?

“That’s anyone’s guess,” Reckamp says. “It can cause inflammation anywhere in your body at any time, even after you stop treatment. You can get inflammation in the brain, colon, thyroid gland, liver, bladder, kidneys, or heart.

“We can predict when you’ll feel bad with chemotherapy, but with immunotherapy, we can’t.”

She says people who get both immunotherapy and chemo need to be on high alert. The number of possible side effects is high, and some can come without warning.
“If you’re not feeling like yourself, call your doctor, and they can help guide you what to do next,” she advises. “Also, [very serious] problems like colitis and pneumonitis [lung inflammation] can happen quickly and suddenly. We need to hear about that right away.”

Scott Gettinger, MD, an expert in immunotherapy and targeted therapy at Yale Cancer Center in New Haven, CT, also warns about pneumonitis. It’s inflammation of lung tissue that can cause cough and shortness of breath. For people with NSCLC, it can be deadly.

“When you suspect pneumonitis, you need to start steroids right away,” he says.

High-dose steroids can bring down life-threatening inflammation. Lower doses may help treat less serious symptoms.

Despite the intense side effects, Reckamp says most people do pretty well with combined treatments.

“You can work, travel, and live a fairly normal life, but you need to adjust for days when you don’t feel well,” she explains. “Hospitals and treatment centers have social workers and many other resources to help you get back into life.”

But, Reckamp says, you’ll also need help you can’t get from a hospital.

“You also need strong social support from your family,” she says. “And it can be helpful to join a group of like-minded people or talk to a therapist or counselor.

“Patients are living longer, so it’s important to help them figure out how to frame what they want for their lives and how to do what they want to do.”

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December 14, 2022
Lung Cancer: How My Health Care Team Helped Me

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By Lavern McDonald, as told to Hallie Levine

I was diagnosed with stage IV inoperable lung cancer in 2018. It has been a long, hard journey. But thanks to my care team and innovative treatments, I have been able to turn this deadly condition into a chronic disease. Here’s what I want others to know.

A Devastating Diagnosis

It took 7 months for me to get my diagnosis. Instinctively, I knew that something was not right. I experienced shortness of breath when I walked up subway stairs, for example, and had stabs of pain under my heart. I passed out while a technician performed a sonogram of my chest cavity.

At first, my primary care doctor suspected pneumonia. But when the sonogram revealed inflammation and large amounts of fluid in my lungs, I was referred to a pulmonologist for a CT scan right away. That test lit up like a holiday tree. The cancer had not only infiltrated both lungs, but it had also spread all over my body, including my brain and spine. A week later, a lung surgeon performed a biopsy. My doctors told me I had a type of non-small-cell lung cancer – the most common type of lung cancer known as an EGFR mutation.

When I learned all of this, I was stunned. I was an otherwise healthy 52-year-old nonsmoker with no family history of any sort of cancer. I worried I would be forced to give up my beloved job as a high school social studies teacher and have to leave my 140-year-old Brooklyn brownstone to move back to Florida to live with my mother.

A Ray of Light

When my doctors delivered my diagnosis, they also did share some good news: There was a new FDA-approved treatment available for this type of metastatic lung cancer. The treatment targets and blocks mutated EGFR found on cancer cells. I began treatment in August 2018. Two weeks later, I was hospitalized with what appeared to be pneumonia. When doctors did a follow-up CT scan, they made a shocking discovery: All my tumors, lesions, and nodules had been halved, and my lungs were simply filled with dead cancer cells. By January 2019, I was in full remission.

I stayed that way for 2 years, until in the spring of 2021 when my cancer recurred. I ended up at Memorial Sloan Kettering in a clinical trial where an experimental drug was added to my original treatment. By January 2022, my cancer had disappeared once again. I then moved to conventional chemotherapy and radiation, which I finished this summer. Now, I’m on the maintenance chemotherapy along with a drug that helps prevent the growth of new blood vessels that could feed tumors.

My Pillars of Support

Throughout this all, my primary care doctor has been my rock. Even after my diagnosis, when I was “handed off” to the pulmonary and oncology teams at various medical centers, she was still there, calling, texting, and emailing me to make sure I was OK. When I interviewed with NYU Langone Medical Center to possibly participate in a clinical trial, for example, she called in to speak to the researchers. She really served as the quarterback. She kept the specialists appraised as to how I was doing and let me know about their discussions with one another.

But what am I most grateful to her for? She really listened to me at the beginning. Many doctors would have written off my symptoms of exhaustion, breathlessness, chest pain, and general malaise as just some of the normal aches and pains that occur with life. Instead, she did a thorough workup and ran all sorts of tests. She refused to give up until she found the root cause, which saved my life.

A couple of years ago, I saw an endocrinologist for a non-cancer thyroid-related issue. She questioned me as to why my primary care doctor ordered all those tests years ago and seemed critical. I fired her. It was a red flag to me that she wouldn’t work collaboratively with my other doctors and she wouldn’t take my symptoms seriously.

It truly takes a village when you are being treated for stage IV inoperable lung cancer. Even though my family lives hundreds of miles away, they are always there when I need them. My mother and sister, who live in Florida, hop on a plane whenever I ask them to. I constantly have relatives who call me from all over the world, and friends who offer up prayers: Jewish prayers. Christian prayers. Hindu prayers. Buddhist prayers. My students and their parents – many of whom are doctors themselves – have also been extraordinary. I am always hearing stories of their own loved ones who are living and thriving with other advanced cancers.

The Importance of Teamwork

While I was always satisfied with my medical care, I was really blown away by the level of attention I got when I was at Memorial Sloan Kettering. During my first clinical trial, while the team was responsive, everyone worked in their own silo. But at Memorial Sloan Kettering, it really felt like we were all in it together. If I had a question, someone always got back to me that same day. I was in tremendous pain when I underwent radiation. The team worked together to develop a pain management plan that included the steroid dexamethasone and an opioid, and then also worked together to help me with side effects that developed from those, like insomnia and constipation.

Most importantly, they’ve made clear to me that they view my cancer not as a death sentence, but as a chronic disease. It’s like type 2 diabetes or high blood pressure. Sometimes, your medication stops working, and you need to find an alternative. There’s no need to let any cancer – even inoperable lung cancer – shut down your life.

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November 14, 2022