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There are many publications and sites that write about cancer. We want you to know we don’t produce the news items you can read in this section, they belong to the MD Anderson Cancer Center. This section only intents to inform you about what is out there.

However, we are working on the first edition of the Pink Ribbon Magazine as well as in the production of featured articles that will be published here.

 

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For follicular lymphoma survivor, time is on her side

When Maribeth Holzer asked her family doctor about a curious lump in her right armpit, she never suspected it was follicular lymphoma.  Her doctor said was probably an ingrown hair caused by shaving, or perhaps a blocked pore due to antiperspirant use.

But when a purple, dime-sized spot suddenly appeared on Maribeth’s face, she decided to visit a dermatologist.

“I felt fine,” she says, “but thought I should have that strange splotch checked out. As long as I was there, I’d ask about the armpit lump, too.”

It’s a good thing she did.

A biopsy revealed Maribeth had follicular lymphoma, a type of B-cell non-Hodgkin lymphoma that starts in the body’s immune system. Follicular lymphoma symptoms may include a lump in the armpit, neck or groin, caused by cancerous immune cells that build up in lymph nodes and cause swelling. The disease can also produce a skin rash that appears as one or more scaly red or purple patches.

“Those were my only telltale signs,” Maribeth says. “Other than that, I didn’t even know anything was wrong.”

The dermatologist in Maribeth’s small Louisiana town suggested she seek cancer treatment in nearby Shreveport or at MD Anderson in Houston.

“Right away, I knew I wanted to go to MD Anderson,” Maribeth recalls, “but just to be sure, I asked him where he would go. He said ‘Definitely, MD Anderson.’”

Days later, Maribeth and her husband made the five-and-a-half hour drive to Houston.

A stage IV follicular lymphoma diagnosis

At MD Anderson, lymphoma specialist Hun Lee, M.D., ordered three days of testing to confirm Maribeth’s diagnosis and see how far the cancer had spread.

“I was told to go home and wait for the results,” Maribeth says, “but Dr. Lee called me at my hotel as I was packing to leave and said, ‘Don’t go. I need to see you tomorrow.’”

The next morning, an anxious Maribeth sat solemnly in Lee’s office as he shared the results: Her cancer was stage IV – the most advanced kind – and had travelled through her lymphatic system to other organs in her body, including the lungs, liver, spleen, stomach and bone marrow.

When Maribeth asked if he could successfully treat the cancer, Lee responded without hesitation: “Oh, I’ll get it.”

His confidence immediately calmed Maribeth.

“I took a deep breath and felt a wave of relief,” she recalls. “His confidence calmed all my fears. I told him, ‘You’re in charge, I’m just along for the ride.’”

Follicular lymphoma is slow growing and symptom-free

By the time follicular lymphoma is diagnosed, it has usually spread beyond the lymphatic system to other places in the body. Because it typically grows very slowly, the disease often is advanced by the time symptoms appear. Most people have no symptoms, and therefore don’t visit a doctor, which gives follicular lymphoma time to spread. Those who do experience symptoms usually complain of swollen lymph nodes, fever, fatigue or skin rash. By this time, the disease has reached an advanced stage.

“‘Advanced’ can sound sound alarming,” Lee says, “but most people with follicular lymphoma are at an advanced stage when they are diagnosed. There are many effective treatments for all stages of the disease, and these can usually control it for many years, even decades.”

Finding the right follicular lymphoma treatment

Maribeth’s treatment began with a clinical trial testing a three-drug combination – rituximab, ibrutinib and lenalidomide. The drugs work together to target and attack lymphoma. After a year, she was one of only two participants on the clinical trial who failed to go into remission, which occurs when all signs and symptoms of cancer have disappeared.

“I was so disappointed, but happy the treatment worked for others,” she says.

Next, Lee placed Maribeth on the chemotherapy drug bendamustine. But after a few months, she began experiencing memory loss – a rare side effect – and had to discontinue the medication.

Finally, Lee prescribed the immunotherapy drug obinutuzumab. The medication wiped out all visible signs of Maribeth’s cancer, except one small spot. After a few rounds of radiation therapy, the spot was gone.

Follicular lymphoma treatment options for a possible recurrence

On Feb. 11, 2020, Maribeth was declared “in complete remission,” which some doctors also describe as “no evidence of disease.” But that doesn’t mean she is cured.

“The more advanced follicular lymphoma is when diagnosed,” Lee explains, “the greater the chance it will return.”

When that happens, a number of treatment options are available, he says, including chemotherapy drugs that stop or slow the growth of rapidly dividing cancer cells, radiotherapy that uses high doses of radiation to kill cancer cells, or newer targeted therapies that work in several ways. Some targeted therapies deliver toxic drugs directly to cancer cells without harming healthy cells. Others block the action of molecules that help cancer cells grow, while still others train the immune system to attack cancer.

“Several targeted therapy drugs for follicular lymphoma already are approved, and many others are being tested in clinical trials,” Lee says. “The outlook for people with the disease continues to improve.”

MD Anderson researchers are also testing CAR T cell therapy as a follicular lymphoma treatment. The therapy reprograms a patient’s own immune cells to recognize and kill cancer.

Most people with follicular lymphoma are treated to keep the lymphoma under control, rather than to cure it. The disease can usually be kept at bay for many years with several courses of treatment.

“The good news is, time is on your side,” Lee says. “Follicular lymphoma grows slowly, and new and better treatments are helping people live disease-free longer. Although it usually can’t be cured, you can live long and well with follicular lymphoma. Most people respond well to treatment — not just the first time, but even when it comes back.”

Little details make a big impact in lymphoma care

This September, Maribeth will return to MD Anderson for a checkup with Lee, whom she calls “the world’s best doctor.”

“He’s an extraordinary communicator,” she says. “He explains complicated medical information in a simple way that anyone can understand.”

When she has a question about her treatment, Maribeth messages Lee using MD Anderson’s patient portal, MyChart. Within minutes, Lee responds.

“I won’t message him on nights or weekends, because I know he’ll answer right away,” she says. “He deserves a break.”

Visiting MD Anderson is always a positive experience, she says.

“Everyone I meet is so considerate and attentive. They always put my needs first, like the nurse who held my hand during a particularly difficult medical procedure, and the scheduler who arranged my appointments closely together so I could make it home in two days instead of three.”

“Little things like those make a big impact,” she says.

Inspiring others

Back home in Monroe, Louisiana, Maribeth is working with her school district’s teachers and administrators to find ways to improve lessons and instruction.

“Working to better the lives of young people is one of my greatest joys,” says the former middle school math teacher, who also volunteers for a nonprofit organization that helps underprivileged teens prepare for a successful future.

Recently, she signed on as a volunteer with myCancerConnection, MD Anderson’s one-on-one cancer support community. The program matches cancer survivors with patients who are newly diagnosed or undergoing treatment.

“So many wonderful cancer survivors called me to offer support, share their experiences, and tell me what to expect during my treatment,” Maribeth says. “Now I want to do the same. Patients and survivors share a special bond. We belong to the same club, and can be a blessing to each other.”

Her advice to anyone affected by cancer: “Continue to live your life! Ask for help when you need it, be kind to yourself, stay positive, surround yourself with positive people, and take time to appreciate the little things. If you can, take a walk every day. It does wonders for your soul.”

Request an appointment at MD Anderson online or by calling 1-877-632-6789.

How to get the most out of your virtual visit

To help reduce the spread of the novel coronavirus (COVID-19) and make it easier for patients to see a doctor without leaving home, MD Anderson and many other health care providers are offering virtual visits for many patients.

Existing MD Anderson patients who have a clinic follow-up visit or a consult visit with a new MD Anderson provider may be eligible for a video visit, depending on where they live. Each state has different regulations regarding video visits and the practice of medicine by out-of-state clinicians. Talk to your care team to learn what may be available and best for you.

“Virtual visits offer a convenient way for our cancer patients to continue receiving the outstanding care they have always experienced from their MD Anderson care team, with the added benefit of not having to leave their homes,” says Neema Navai, M.D.

If you’ve never had a virtual visit before, here’s what you should know to get the most out of your virtual visit.

Plan ahead ensure a productive conversation

“Virtual visits offer tremendous convenience since they can be done from anywhere with the click of a button,” says Navai. “But they do require a little bit of planning ahead to ensure you and your provider have a productive visit.”

Whether your appointment is virtual or in person, it can be hard to remember everything you want to discuss with your health care provider.

So, before your appointment, write down your questions, as well as new symptoms and concerns. This will help ensure you don’t forget anything important that you want to discuss during your visit.

Before your virtual visit with your MD Anderson provider, it’s also important to complete the eUpdate process to update your information in MyChart. You can verify your personal details, medications and insurance information up to 7 days before your virtual visit. We recommend doing this 2-3 days before your appointment so these details can be shared with your clinical team in advance. A member of your care team will call you before your appointment to review your list of medications and ensure you’re ready for your video visit.

Download the apps you need in advance

Before your appointment, download the apps you need on the device you plan to use and make sure you can access them correctly.

MD Anderson patients are encouraged to use the MyChart mobile app on a smartphone or tablet for the best video visit experience. You can download the free MyChart mobile app from the App Store or Google Play. You will also need to download the ZOOM Cloud Meetings app to the same device. Newer smartphone and tablets will be able to download the ZOOM Cloud Meetings app; see a list of operating systems that support the ZOOM Cloud Meetings app.

You must use the MyChart mobile app to join a video visit on your smartphone or tablet. You cannot go to our MyChart website from your smartphone or tablet and start your video visit.

While you can use a computer to access your MyChart account at MyChart.mdanderson.org, you may have more technical problems than if you use the MyChart app on a smartphone or tablet. Use our MyChart Video Visit Instructions or call 1-877-632-6789 if you need assistance. You also can watch a video with MyChart Video Visit instructions.

Set the stage for your virtual visit

Just as you’d do for a video call with colleagues, find a quiet, well-lit space for your virtual visit. Be sure to check the background noise and any visuals that may appear around you while you’re on screen.

Test where to direct your gaze on your webcam setup. Look into the camera so your doctor can have a more engaged conversation with you.

Use headphones, if possible

Plan to use headphones or a headset, if you have them. This will make it easier to hear your provider and may improve the sound quality.

If you’re including a household member in your virtual visit or don’t have headphones or a headset, check for background noise and move to a quieter space, if necessary, to eliminate distractions during your virtual visit.

Do a tech check

Before your visit, make sure your device is charged and that you have a strong internet signal or WiFi connection. A higher speed internet connection will help to increase the overall quality of the video and audio during your virtual visit.

It’s also important to confirm that your audio, video and headphones are working at least an hour before your virtual visit. They should work if you’ve recently used your device for other video chats.

“As with any new technology, you may encounter technical issues, but to ensure we can provide a timely and high quality experience, it’s a good idea to test everything before your visit,” says Navai. “You’ll have a better, more focused conversation with your provider if you don’t have to worry about technical difficulties.”

Your virtual visit will last as long as an in-person appointment

Your virtual visit will run a lot like an in-person visit and last about as long. Your provider will ask you questions, covering topics such as new symptoms, side effects and other concerns you may be having, as well as next steps for your treatment or follow-up care.

Use this time to ask questions and share concerns with your provider, just as you would in person.

You can include family members in your virtual visit

Just as you might have brought family members to appointments before visitor restrictions were put into place to prevent the spread of COVID-19, you can include family members in your virtual visit. A family member or loved one can provide a second set of ears, take notes and ask questions you might not think of.

If your family member if participating from your home, have them in the same room as you and make sure they can appear on the screen, too, if possible. If you try to include them from another device in the same home, there may be a distracting echo.

Want to include a loved one in your virtual visit from another location? If you’re an MD Anderson patient, you can add them through the ZOOM app by following these instructions

Plan to pay the same co-pay that you would for an in-person visit

You will be charged the same co-pay for your virtual visit as you would for an in-person appointment. But you will not be asked to pay during your virtual visit. Instead, the balance will be listed in your eUpdate after your visit. Your insurance company determines the cost of this co-pay. If you have questions about charges, payments and balances, send a message in MyChart or call 1-800-527-2318.

Know what to do if the connection is lost

Sometimes things don’t go exactly as planned. Here’s what to do if you lose your connection during your video visit:

  • If you can still see your video, keep the video connection active and don’t close the video window. Your provider may be able to rejoin soon.
  • If you lose your connection, restart the video visit following these steps. You may be placed in the virtual waiting room until your provider is able to restart the video visit.
  • If the video visit can’t be restarted, your provider will call you to complete the visit or provide more instructions. Your provider will call you at the phone number you listed in your eUpdate, so be sure to keep that phone close by.

Learn more about virtual visits at MD Anderson.

Request an appointment at MD Anderson online or by calling 1-877-632-6789.

Have an MD Anderson appointment during the COVID-19 pandemic? Here’s what to know

Despite communities beginning to lift “stay home” orders during the novel coronavirus (COVID-19) pandemic, MD Anderson’s operations – including patient appointments – continue to be affected.

While MD Anderson is open for care, the organization must keep enhanced safety measures in place to reduce the potential for COVID-19 exposure on our campuses and protect the health of our patients and our employees. Cancer patients are especially vulnerable to COVID-19 because their immune systems are weakened due to treatment or the cancer itself.

“Our patient population represents the largest and densest immunocompromised population in the world,” says Peter WT Pisters, M.D., president of MD Anderson. “We must accept that we will co-exist with COVID-19 until we reach a widespread state of immunity. Our readiness to protect our patients and our workforce is crucial.”

So what changes can MD Anderson patients and families expect during COVID-19?

Making patient appointments during the COVID-19 pandemic

Our process for new patients requesting MD Anderson appointments remains the same. Patients can self-refer online, or a physician may initiate the referral. Current patients should contact their care teams through MyChart, or by calling their clinic.

Our clinical teams will work with you to determine the most appropriate option for your care, which for current patients may include a virtual visit, care coordination in your local community if you live outside the Houston area, or visiting an MD Anderson location for your appointments and cancer treatment. Our goal is to reduce the number of visits to Houston to keep our patients safe, since traveling increases the risk of COVID-19 infection.

Patients traveling from outside Texas may need to self-quarantine

Patients living in certain areas outside of Texas will be asked to self-quarantine for 14 days if they do need to travel to MD Anderson, and new patients will be scheduled for a nasal swab COVID-19 test prior to appointment arrival.

You’ll receive a MyChart COVID-19 questionnaire before your appointments

All patients will receive a MyChart questionnaire four days prior to their scheduled appointments to ask about travel outside Texas, symptoms, exposures, and local COVID-19 testing by nasal swab. You may be requested to take a COVID-19 nasal swab test at MD Anderson, even if you aren’t experiencing symptoms.

What to expect when you arrive for an appointment during the COVID-19 pandemic

At our Texas Medical Center (TMC) Campus, there are specific entrances for patients, including:

  • Main Building, The Pavilion valet entrance
  • Main Building, The Aquarium valet entrance
  • Main Building, Garage 10, Floor 3 skybridge
  • Mays Clinic, East Lobby valet entrance
  • Faculty Center, Floor 3, near Garage 17 entrance

Nearby parking garages are open, but our valet parking operations are suspended due to COVID-19.

If you are driving yourself to our Texas Medical Center Campus and need assistance from the garage into the building, please drive to either The Aquarium Valet entrance or Mays Clinic Valet. Our valet team will direct you on where to park. Then they will meet you at your garage with a wheelchair and help you get into the building. Our Patient Transportation team will take over once you’re in the building.

As you enter our campus, you will be screened for COVID-19 symptoms and exposure, and provided a face mask to be worn throughout our campus. Even if you have your own fabric mask, we ask that you wear the mask you’re provided while you are on our campus, unless instructed by a member of your clinical team to remove it for care.

Social distancing measures are in place throughout MD Anderson. Some services and amenities are limited or closed to comply with Centers for Disease Control and Prevention (CDC) social distancing guidelines and reduce the spread of COVID-19, including:

  • Valet parking
  • Café seating
  • Hospitality Centers
  • Patient Relaxation Area
  • Beauty/Barber shop
  • The Learning Centers
  • Salus at our Houston-area locations
  • Mail station in the Main Building

Grab-n-Go foods are still available at our dining locations, and patients are welcome to eat in public spaces, such as our lobbies and reception areas, while keeping a safe distance of 6 feet away from others. Gift shops at our TMC Campus are open. 

COVID-19 visitor restrictions

It’s important to note that visitors – for both inpatient hospital stays and outpatient clinic appointments and procedures – are currently restricted at all of our locations. There are limited exceptions for pediatric patients, adult patients with neurocognitive issues and/or who are unable to consent for themselves, as well as for hospitalized patients who may be facing end of life, as clinically assessed by their care teams.

We understand that family members and friends are important members of our patients’ care teams, but the visitor restriction is necessary to reduce the number of people entering and traveling through MD Anderson. We’re encouraging patients to bring smart devices to their appointments so they can connect with their loved ones by phone or video conference. Our care teams can help include your loved ones in the appointments virtually, just as they would if they were there in person.

“We know how valuable our patients’ support systems are during treatment,” says Beth Garcia, associate vice president for Patient Experience. “We’ve heard from many of our patients who appreciate the additional steps MD Anderson is taking to keep them safe, and we are so impressed by some of the creative ways caregivers are supporting their loved ones during appointments, when they’re not able to be physically present.”

Parking and restroom access for caregivers

MD Anderson has arranged free “cell phone” parking lots for family members or friends waiting to pick up patients from appointments. These cell phone lots are in:

  • Braeswood Garage (Floor 1, via valet entrance) on Braeswood Boulevard, just south of Holcombe Boulevard
  • Zayad Building (surface lot) on MD Anderson Boulevard, just north of Garage 10
  • Mays Clinic Garage (Floor 1, via valet entrance) off Holcombe Boulevard, west of Bertner Avenue

It’s recommended that people using the cell phone lots bring their own food and beverages, as they will not be able to come into MD Anderson to purchase food and drinks.

There are portable restrooms on site at the cell phone lots. If visitors need to use indoor bathroom facilities, they may enter the patient screening locations at The Pavilion, The Aquarium and Mays Clinic, but will be screened for COVID-19 symptoms, then escorted to and from the restroom.

If there are climate concerns, some indoor sitting areas can be accessed between 6 a.m. and 6 p.m. in The Aquarium, The Pavilion and in Mays Clinic, but you will need to be screened for COVID-19 symptoms and exposure before entering, and CDC social distancing guidelines will be enforced.

Appointments and support groups are available online

Our doctors have increased their availability for virtual visits, allowing patients to connect with them through live video and audio on their own devices. In addition to video appointments, MD Anderson is offering online support groups for cancer patients and their families during the COVID-19 pandemic. The groups are facilitated by professional trained social work counselors. You can get information and sign-up via our Support Groups site. One-on-one support is available through MyCancerConnection.

Looking ahead

MD Anderson continues to monitor COVID-19, and our operations continue to evolve in response. Currently, we are increasing the availability of appointments in some of our care and procedure areas, as well as re-opening enrollment for some clinical trials.

However, we remain prepared and ready to respond in the event of a sustained rise in COVID-19 cases or signals of a second peak. Up-to-date information about our COVID-19 response is available via our coronavirus site. Patients with questions or concerns specific to their care are encouraged to contact their care teams via MyChart.

Request an appointment at MD Anderson online or by calling 1-877-632-6789.

Mantle cell lymphoma patient benefits from clinical trial despite COVID-19 pandemic

Charles Salazar lives in New Jersey, but considers Houston his “second” home.

For four years, he and his wife, Debbie, have been traveling to Houston regularly so he can receive treatment for mantle cell lymphoma, a rare type of non-Hodgkin lymphoma, at MD Anderson.

“Sure, I could have sought care closer to home, but my wife is a nurse who knows her stuff,” he says. “As soon as I was diagnosed, she started researching where I could get the best treatment.”

Debbie’s diligence led the couple to Michael Wang, M.D., one of the nation’s foremost experts in mantle cell lymphoma.

“We made the three-hour flight to Houston to visit Dr. Wang,” Charles says. “As soon as we met him, that was it – we knew he was our guy. He’s not only tops in his field, but he’s also a passionate advocate for his patients.”

A wait-and-watch approach to mantle cell lymphoma treatment

Wang determined that Charles had a slow-growing form of mantle cell lymphoma, and placed him on a wait-and-watch protocol.

“Many patients like Mr. Salazar who have few to no symptoms can be monitored over time without any treatment,” explains Wang. “If their cancer begins to advance, we shift from surveillance to active treatment.”

That’s exactly what happened to Charles. Last year, after four years of holding steady, a PET scan showed his slow-growing mantle cell lymphoma had indeed begun to inch forward.

Phase II clinical trial offers new mantle cell treatment option

At this same time, Wang was launching the Windows II clinical trial, which would test a combination of three drugs to treat mantle cell lymphoma.

Participants would take the drugs rituximab, ibrutinib and venetoclax, which would allow them to either avoid chemotherapy and its side effects altogether, or take a reduced chemotherapy dose after the three-drug treatment.

Wang had already tested two of the drugs in a previous clinical trial called Windows I, with impressive results – 92% of participants had gone into complete remission.

He hoped that adding a third drug in the Windows II trial would bump that number up to 100%.

Salazar was on board.

“I said, ‘sign me up.’ Let’s do this.”

The treatment would be given over 10 cycles, accompanied by blood tests and scans to monitor progress along the way. Salazar made it all the way to cycle six before the novel coronavirus (COVID-19) put the brakes on his travel to Houston.

“I was doing great – a PET scan showed the drugs were working,” he says. “And then the pandemic hit.”

Continuing a mantle cell lymphoma clinical trial close to home

Wang presented Charles with three options: withdraw from the clinical trial completely, delay treatments until it was safe to travel again, or continue participating in the trial at an MD Anderson Cancer Network partner member facility closer to his home. Partner members integrate their clinical cancer care operations with MD Anderson and mirror the way we deliver cancer care here in Houston.

Charles chose the latter option, and became a patient at MD Anderson Cancer Center at Cooper in Camden, New Jersey, an hour and a half from his home.

“That’s the easiest decision I’ve ever had to make,” he says.

Striving for complete remission from mantle cell lymphoma

His doctor there, Andres Ferber, M.D., communicates frequently with Wang. Together, the two make sure their shared patient stays the course.

As he nears the end of the clinical trial, Charles will undergo a bone marrow biopsy, a colonoscopy and an endoscopy to determine whether he’s entered into complete remission – meaning all signs of cancer have disappeared in response to the treatment. The tests are required because cancer cells were found in his bone marrow and gastrointestinal tract when he was first diagnosed.

Once complete remission is confirmed, he’ll enter into the clinical trial’s maintenance phase, during which he’ll take medications to help prevent the cancer’s return.

Charles, for one, is pleased about his seamless transition of care.

“We didn’t miss a beat,” he says.

Back to Houston

This June, Charles will return to Houston to continue his participation in the clinical trial and receive follow-up care. He looks forward to reuniting with the health care team he views as friends.

“Everyone is so professional, warm and welcoming,” he says. “The doctors, nurses, physician assistants, technicians, receptionists and everyone I encounter treats me like I’m their only patient. They work as a team to make sure I receive the highest quality care.”

 Until they return to Houston, Charles and Debbie will continue enjoying their time in New Jersey with their three rescue dogs.

“We’re real homebodies now,” he says, “like everybody else during this pandemic.”

Request an appointment at MD Anderson online or by calling 1-877-632-6789.

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