Living With Advanced Gastric Cancer
Resources, expertise, and survivor support to help you after a diagnosis

Not everybody can get to a designated comprehensive cancer center, but the data is clear that these centers are extremely helpful — especially when your disease is complex and advanced.

There are plenty of excellent physicians who are not at comprehensive cancer centers. That being said, when you are looking into care, you should be asking, “Am I getting doctors with different specialties like medical oncology, radiation oncology, surgery, pathology and radiology?”

The really important thing is that you have a team that is up to date with the latest science. That can happen away from a major cancer center or it can happen at one. In order to get the best guidance, it’s important to get comfortable asking your doctor questions and bringing up your concerns.

Here is what to expect with a diagnostic laparoscopy:

1. Anesthesia: The procedure is typically performed under general anesthesia.
2. Incisions: A small incision is made near the navel (belly button), and carbon dioxide gas is introduced to inflate the abdomen for better visibility.
3. Insertion of the camera: The laparoscope is inserted through the incision to transmit images to a video monitor.
4. Additional Instruments: If necessary, other small incisions are made to insert surgical tools for tissue sampling or minor surgical interventions.
5. Examination and Biopsy: The surgeon examines the organs and may take tissue samples for biopsy.
6. Completion: After the examination, instruments are removed, the gas is released, and incisions are closed with stitches or surgical tape.

Why is Staging Laparoscopy Essential?

Staging laparoscopy allows doctors to check for signs of cancer spread, especially within the peritoneum, which is the membrane lining the abdominal cavity.

This is critical because imaging tests, like CT scans, can sometimes miss subtle signs of spread in this area. Research has shown that up to 30-50% of cases with undetected spread on CT scans are identified through diagnostic laparoscopy​. Identifying these signs early can prevent unnecessary surgeries and help doctors focus on treatments that offer the best quality of life.

This accuracy is crucial for patients with advanced-stage cancer, especially when they’re considering whether surgery is appropriate. In cases where the cancer has spread extensively, chemotherapy and other supportive therapies may be more beneficial than surgery, reducing surgical risks and allowing patients to start treatments sooner​.

How Does Chemotherapy Work?

Chemotherapy is a medication that travels through the bloodstream and reaches all parts of the body (it’s a systemic therapy). In general, these are powerful chemicals that treat cancer by attacking cells during specific parts of the cell replication (cell cycle). Cancer cells go through this process faster than normal cells, so chemotherapy has more of an effect on these fast-growing cells.

The goals for chemotherapy include:

• Shrink tumor size
• Lower the total number of cancer cells in your body
• Reduce the likelihood of cancer spreading
• Reduce current symptoms

Chemotherapy is administered in cycles, with a period of treatment followed by a period of rest to allow the body to recover from the treatment’s side effects. The length and number of treatments, as well as the specific kind and dosage of medications used, will vary from patient to patient.

Chemotherapy medication can stop your bone marrow from producing enough red blood cells, white blood cells and platelets. So, before your treatment starts you need to have a blood test to check your levels of these. Depending on your results, your oncologist may recommend delaying chemotherapy or using specific treatments to improve your values before starting.

“We think about things like frailty, tolerance to therapy and whether or not they’re really going to be able to withstand additional efforts such as chemotherapy. Overall though, the vast majority of patients with gastric cancer will get some type of chemotherapy to help reduce the probability that their cancer recurs,” Dr. Hornstein explains.

Nausea

“One of the things that patients worry most about is nausea with chemotherapy,” Dr. Michael Ulm, gynecologic oncologist at West Cancer Center, told SurvivorNet during a previous chat. “Everybody remembers what their parents went through or what their aunts and uncles went through probably 15 or 20 years ago.”

Even though people can still anticipate nausea, Dr. Ulm said your nausea shouldn’t be as bad as you’re imagining with today’s arsenal of effective treatments to combat the side effect.

“I tell my patients, with modern medicine and modern antiemetics that you should never have severe nausea and you should never throw up,” Dr. Ulm said.

Hair Loss or Thinning

Many chemotherapies can cause hair loss or thinning.

Hair loss typically begins about three to four weeks after patients begin chemotherapy and continues throughout treatment. Patients can expect regrowth around four to six weeks after they complete treatment, but some patients may experience some changes to hair color and texture when it begins growing back.

The hair loss associated with chemotherapy is temporary, but this can be an incredibly distressing side effect for some. It’s important to speak with your doctor about any personal issues that may be caused by treatment side effects, including the loss or thinning of your hair.

To help patients cope with hair loss, a doctor or nurse may be able to recommend a local wig-maker or other resources that can help slow down the process.

Fatigue

Fatigue is another possible symptom that has the potential to worsen as chemotherapy cycles add up. If chemotherapy left you with anemia, you can try treating that to ease exhaustion. But rest breaks, frequent exercise and getting plenty of sleep at night can also help fight fatigue.

In an earlier interview, Dr. Zachary Reese, a medical oncologist at Intermountain Healthcare, spoke with SurvivorNet about what chemotherapy-related fatigue is like.

“What I typically tell patients is that (chemotherapy) is a bit of a roller coaster ride,” he said. “You’re going to feel tired about a week into treatment, and that’s when you’ll hit bottom. And then you’ll start to come back up again just in time to do it all over. You’ll feel a little more tired the second time around than you did the first, and it will last a day longer.”

Heart Problems

Cardiotoxicity, or problems in the heart and vascular (circulation) system, can be a side effect of chemotherapy.

“From chemotherapy, high doses of anthracyclines, in particular, have been the prototype of cancer therapies that lead to cardiotoxicity,” Dr. Emanuel Finet, a transplant cardiologist at Cleveland Clinic Cancer Center, previously told SurvivorNet.

Cancer patients at a high risk for heart problems can be older, younger with more aggressive chemotherapy, obese, smokers or dealing with pre-existing cardiovascular disease.

Blood-Forming Cell Damage

Chemotherapy drugs can damage all three types of blood-forming cells: red blood cells, platelets and white blood cells. This in turn can lead to various issues like anemia (low red blood cell count), thrombocytopenia (low blood platelet account), or neutropenia (low number of a type of white blood cell called neutrophil).

“One of the things that’s changed in the coronavirus days is that now we’re giving everybody this drug called Neupogen or Neulasta, and it helps boost your white (blood cell) count,” Dr. Ulm explained. This is a way to help your body fight infections.

Nerve Damage

Nerve damage, or neuropathy, can leave you with symptoms like “pins-and-needles,” pain, burning, numbness, weakness or trouble detecting heat and cold.

These symptoms might worsen as chemotherapy treatments progress, but there are ways to combat them. Steroids, numbing patches or cream, antidepressant medicine, anti-seizure medication physical therapy, relaxation techniques, acupuncture or dosage adjustments may help with these symptoms.

And while the symptoms of nerve damage might go away once you finish treatment, there can be lasting effects that require ongoing treatments.

What is Molecular Profiling?

Molecular profiling is actually utilizing various tests — including next generation sequencing — to generate a genomic profile for the cancer, as well as identify important biomarkers that can define diagnosis, prognosis, and predict response to treatment.

This should be part of discussions between you and your healthcare team after a cancer diagnosis.

Next-generation sequencing is a super advanced tool that has changed how we study genes. It’s like a modern toolbox used by scientists to quickly and affordably read the instructions of an organism’s DNA or RNA. This has helped researchers read a lot of genetic information quickly — so they can understand entire sets of genes, find differences in genes, and study how genes work.

“If the patient’s tumor has a specific generic alteration called microsatellite instability, nowadays we can use immunotherapy for these patients,” explains Dr. Pereira. This is why it’s so critical to test patients for mutations.

According to NCCN guidelines, if metastatic gastric cancer is documented or suspected, it’s mandatory to perform HER2, PD-L1, and microsatellite testing (if not done previously).

Sometimes in cancer cells, the ability to correct DNA replication errors is disrupted by the mutation of mismatch repair (MMR) genes. When the MMR system is defective, it silences specific proteins (MLH1, MSH6, PMS2, MSH2), whose job it is to correct occasional replication errors.

Thus, a mismatch repair deficiency (dMMR) allows errors to accumulate and the accumulation of errors is known as high microsatellite instability (MSI-H).

There are two kinds of laboratory tests for this biomarker, both involve a tissue sample (biopsy) of the tumor. Depending on the method used, an abnormal result is called either microsatellite instability high or mismatch repair deficient (dMMR)

How are Checkpoint Inhibitors Used?

Simply put, checkpoint inhibitors are a class of immunotherapy drugs that specifically target proteins found either on immune or cancer cells to prevent their binding together.

Checkpoint inhibitors do not kill cancer cells directly, but stimulate the immune system to find the cancer cells and attack them while hopefully not affecting other surrounding healthy cells.

Pembrolizumab (brand name Keytruda) or Nivolumab (brand name Opdivo) are examples of checkpoint inhibitors that target PDL1 and can be used for patients who are MSI-H.

In certain types of cancers, such as some advanced gastric cancer, this overexpression leads to the cancer cells growing and dividing much faster than normal cells, leading to disease that is far more aggressive compared to cancers that don’t express high levels of HER2.

The frequency of HER2 overexpression in gastric and gastroesophageal cancer ranges from 4.4% to 53%, with a mean of 18%

Enhertu

“Targeted drugs” like Enhertu directly seek out and bind to HER2 proteins to effectively slow down or stop the growth of the cancer. Because it avoids harming healthy tissue surrounding the cancer, it can have fewer side effects compared to traditional chemotherapy.

Dr. Anupama Nehra, the clinical director of hematology/oncology at the Rutgers Cancer Institute at University Hospital in New Jersey, explains why:

“It’s a bioengineered drug that essentially has more of an effect on the tumor cells compared to normal cells. So use of this medication actually helps minimize some of the effects on the normal tissue, but maximize the effects on the tumor tissues.”

Dr. Nehra adds that the drug delivers even more benefit thanks to a phenomenon called “the bystander effect.”

“This basically means that the surrounding tumor cells are also targeted by the medication,” she explains.

Enhertu is an antibody-drug conjugate (ADC), a type of targeted cancer therapy designed to deliver cancer-killing medication directly to cancer cells. This drug consists of an antibody linked to a potent chemotherapy agent. The antibody part of Enhertu specifically recognizes and binds to HER2, a protein found in high amounts on some cancer cells.

The drug is considered ‘tumor-agnostic’ meaning its use isn’t restricted to one type of cancer. Instead, it targets any tumor that expresses the HER2 protein, regardless of the cancer’s original location or type.

This broad potential makes it a versatile option in cancer treatment, particularly for patients whose cancers have a specific molecular target like HER2. Studies show that it is particularly beneficial in endometrial and other gynecological cancers.

Once Enhertu attaches to the HER2 protein on the surface of a cancer cell, it is absorbed into the cell. Inside, the link between the antibody and the chemotherapy drug is broken, releasing the chemotherapy to kill the cancer cell. This targeted approach helps to minimize the impact of the chemotherapy on healthy cells, reducing side effects and focusing the treatment’s power directly on the cancer cells.

Herceptin

Studies have shown that Herceptin attaches to HER2 receptors. It may stop a HER2 receptor from telling the cell to grow and divide. Also, it may signal the body’s immune system to destroy that cancer cell.

Herceptin is indicated, in combination with regular chemotherapy, for the treatment of patients with HER2 overexpressing metastatic gastric cancer, who have not received prior treatment for metastatic disease.

As you continue with your Herceptin treatment, it’s important to monitor your progress and remain mindful of how you’re feeling.

Herceptin can cause side effects, so be sure to tell your doctor if you experience any discomfort during or after treatment.

The most common side effects of Herceptin are:

• Headache
• Diarrhea
• Nausea
• Chills
• Fever
• Heart problems
• Infection
• Insomnia
• Cough
• Rash

Herceptin may cause serious heart problems, including some that don’t have symptoms, such as reduced heart function, and some that do have symptoms, such as congestive heart failure.

Additional symptoms to watch for include:

• Swelling of the ankles or legs
• Shortness of breath
• Cough
• Weight gain of more than 5 pounds in less than 24 hours

PD-1, referred to as programmed cell death 1, is a protein that is found on the outer surface of cells in your immune system. PD-L1, referred to as programmed cell death ligand, is on the outer layer of some normal blood cells, as well as some cancer cells.

When PD-1 binds to PD-L1, this puts the brakes on the immune system and can prevent immune cells from attacking and killing cells. Normally, this acts as a braking mechanism to prevent our immune systems from becoming overactive and going somewhat haywire by attacking our normal cells. Cancer cells can take over or override this innate mechanism, preventing cancer cells from dying.

Pembrolizumab (brand name Keytruda) or Nivolumab (brand name Opdivo) are examples of checkpoint inhibitors that target PD-L1 on cancer cells.

Claudin 18.2 is a protein found on the surface of certain cancer cells, including those in the stomach. Detecting the presence of this protein is crucial because Vyloy specifically targets cancer cells that express claudin 18.2, helping the immune system recognize and destroy them.

Before starting treatment with Vyloy, your healthcare provider will order a test to determine whether your tumor expresses claudin 18.2. This is where molecular testing comes in.

This test is done using a sample of the tumor tissue, which is usually obtained through a biopsy. This test is called immunohistochemistry (IHC) and it just got FDA approval as well. The test involves staining the tumor cells and looking for moderate to strong claudin 18.2 expression in at least 75% of the cells.

By looking at the results of the molecular testing, your doctor will get a better idea of:

• Your treatment options & whether you’re likely to benefit from a targeted therapy
• Whether the targeted therapy is likely to increase survival and improve quality of life
• Whether your cancer will likely become resistant to a targeted therapy

Because targeted therapies focus on specific aspects found on cancer cells only, this often leads to better activity against the tumor and fewer side effects compared with traditional chemotherapy.

This treatment is specifically for patients whose tumors test positive for claudin 18.2 (CLDN18.2) and are negative for HER2.

As previously discussed, HER2 is a protein that can influence cancer growth. Some gastric cancers overproduce it, which can help cancer grow and spread faster.

Patients with HER2-positive gastric cancer often benefit from treatments that specifically target HER2, such as Herceptin or Enhertu. However, Vyloy is meant for patients with HER2-negative gastric cancer, which means their tumors do not over-express this protein.​

For HER2-negative patients, treatment options were historically more limited, but Vyloy provides a new avenue for managing the disease, offering hope for those whose tumors test positive for the claudin 18.2 protein​.

Who is Eligible for Vyloy?

Not every patient with gastric cancer will be a candidate for Vyloy.

To be eligible for this medication a patient must:

• Have tumors that cannot be removed with surgery or have spread
• Be HER2-negative
• Test positive for claudin 18.2

What to Expect During Treatment

Vyloy is administered as an intravenous (IV) infusion. The infusion schedule typically depends on the chemotherapy regimen being used alongside Vyloy — it will be given either every two or three weeks​.

Each infusion session will be carefully monitored by healthcare providers, who will watch for any potential side effects and provide medications to prevent nausea and vomiting.

Potential Side Effects

As with any cancer treatment, Vyloy can have side effects.

The most common ones include:

• Nausea
• Vomiting
• Fatigue
• Diarrhea

Some patients may also experience a loss of appetite, abdominal pain, or a decrease in weight. These symptoms may be uncomfortable, but your healthcare team will work closely with you to manage them.

More serious side effects, though less common, include allergic reactions during the infusion, which could cause symptoms such as wheezing, hives, or difficulty breathing. In such cases, medical professionals will be on hand to provide immediate care and adjust the treatment as necessary​.

The side effects of immune checkpoint inhibitors differ from patient to patient depending on many factors, these include:

• The health state of the patient before starting the treatment
• Type of checkpoint inhibitor
• Dosage of checkpoint inhibitor
• Other therapies used with the checkpoint inhibitor

Some of the side effects associated with checkpoint inhibitors immunotherapy include:

• Skin color changes, rashes, itchiness, inflammation
• Fatigue, weakness, and tiredness
• Diarrhea, constipation, and stomach pain
• Coughing
• Chest pains
• Loss of appetite
• Joint pain
• Aching muscles
• Dry cough and breathlessness
• Infusion reactions (from the site of injecting the drugs)
• Autoimmune reactions (where the body may attack other organs because of overstimulating the immune cells, which causes other comorbidities).

Some of the rarer but more serious adverse effects that can happen include:

• Diabetes (due to inflamed pancreas)
• Hepatitis (due to liver inflammation)
• Inflamed heart muscle
• Inflamed kidney or kidney failure
• Changes in thyroid gland activity
• Nervous system disorders like trouble breathing and numbness
• Inflamed pituitary gland

Hence, it’s pivotal to follow up with your healthcare provider, get regularly tested, and report any side effects immediately.

“The National Comprehensive Cancer Network believes that the best management for any patient with cancer is in a clinical trial,” Dr. Mariam Eskander, a surgical oncologist and Assistant Professor of Surgery at the Rutgers Cancer Institute of New Jersey, told SurvivorNet.

“Clinical trials are not the last resort — they can actually be a first resort,” she added. “And so I bring them up early.  I include them in the list of treatment options I have for a patient.”

Although there’s no guarantee that newly offered treatments will produce great results in curing gastric cancer, at the very least, it can ensure proper care and follow-up from the healthcare team running the trial.

There’s also the knowledge that you’ll be helping doctors make ground-breaking discoveries and produce much-needed treatments empowering other patients like you.

Additionally, many of the fees or added costs that are directly related to the trial will be covered by insurance or the trial, so you will often not have to pay to get treated.

To maintain a positive mindset and address mental health struggles you may be having, treatment may include:

• Seeking professional help from a psychiatrist or therapist
• Learning healthy coping skills
• Medication such as antidepressants
• Adding more physical activity to your routine
• Adjusting your sleep schedule
• Connecting with others via support groups
• Mindfulness and meditation

5 tips for Practicing Mindfulness

1. Choose one daily activity to practice mindfully (e.g. eating your lunch, brushing your teeth or taking a shower). During this activity notice your breath and activity of your mind for a few moments.
2. Take a pause throughout your day. During your day, find a moment to stop and take five deep breaths with your eyes closed.
3. Kindly acknowledge a moment you’re experiencing a difficulty by putting your hand on your heart and saying, “I feel my pain. How can I be kind to myself in this moment?”
4. Get curious about your emotions. Experiment with welcoming your emotions as they come, instead of pushing them away.
5. Become aware when you’re in a rush. Ask yourself, “Do I really need to hurry?”

Jon Kabat Zinn, founder of the eight-week stress-reduction program, Mindfulness-Based Stress Reduction (MBSR), a course that has entered the mainstream of health care, scientific study, and public policy, describes mindfulness as “paying attention in a particular way: on purpose, in the present moment, and nonjudgmentally.”

The first step to being able to pay attention in the present moment is slowing down the mind often referred to as the “monkey mind.” This is done through a regular meditation practice.

Regularly meditating allows people to start to become more aware of the emotions in the physical body and the thoughts running through the mind, to feel into their emotions and acknowledge their thoughts as they arise, and then gently let them go.

Shannon Masur, a colon cancer and Lynch Syndrome survivor, describes this as “when a thought comes in, to feel it, feel the fear, but let it go after a few seconds.”

This all aims to reduce stress and anxiety in the body. It may also help patients to control problems such as pain, difficulty sleeping, tiredness, feeling sick and high blood pressure.  This was confirmed in a 2011 study in which most participants expressed a number of perceived positive effects after participating in a mindfulness program.

These benefits included increased calm, enhanced sleep quality, more energy, less physical pain, and increased well-being. These findings show that through mindfulness, you may be able to enhance your capacity to handle the life stresses that affect the body’s ability to heal.

Based on years of experience, Dr. Geoffrey Oxnard, a thoracic oncologist at Boston Medical Center, says he has a simple set of rules he tells his patients to help them cope.

Don’t act sick

Just because you have cancer doesn’t mean that you have to stop doing the things that you enjoy. Stay active.

Don’t lose weight

Cancer can eat away at your physical reserves, so it’s important that you top them up with the calories and nutrients you need to fight the disease.

Don’t be a tough guy

When you have cancer, things like diarrhea or tingling nerves can be a sign that the dose or frequency of your treatment needs to be adjusted. Speak up and let the members of your care team know so that they can help.

Ultimately, dealing with your cancer treatment means staying positive, having full communication with those who can help and support you, and remembering that your life went on before treatment, and can go on just the same after treatment. There’s no reason why it shouldn’t go on during treatment.

And yes, you have the strength!

Dr. Ken Miller, Director of Outpatient Oncology at the University of Maryland, Greenebaum Cancer Center, has an additional four tips to help keep cancer survivors healthy. They include:

1. Exercise at least two hours a week — and walking counts.

2. Eat a low-fat diet.

3. Eat a colorful diet with lots of fruits and vegetables. The American Cancer Society recommends aiming for two to three cups of vibrant vegetables and fruits each day.

4. Maintain a healthy weight. Studies have shown that being obese can increase your risk for several types of cancer.