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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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Hereditary leukemia syndromes: What patients and their families should know

Certain genetic changes, or mutations, can increase a person’s chances of developing cancer. These changes, known as hereditary cancer syndromes, can be passed down from parent to child. Hereditary leukemia is one of the newest areas our experts are studying.

Courtney DiNardo, M.D., and genetic counselor Sarah Bannon with MD Anderson’s Hereditary Leukemia Clinic are among a handful of health care providers worldwide specializing in hereditary leukemia syndromes. They recently spoke with us about hereditary leukemia and what having one of these syndromes means for patients and their family members.

Here’s what they had to say.

What genes cause hereditary leukemia?

Researchers have identified about a dozen unique syndromes for hereditary leukemia, and that list is growing every year. For a long time, leukemia was thought to be sporadic and not hereditary, even though it clearly ran in some families. In 2008, one of the first genes linked to leukemia — RUNX1 — was identified and became available for genetic testing in 2008. People who inherit changes in the RUNX1 gene can face a higher risk of acute myeloid leukemia (AML). The RUNX1 mutation can also cause the carrier to have a lower platelet count, which plays an important role in blood clotting.

Once that gene was identified, more major research was conducted to see if there were more gene mutations linked to hereditary leukemia. These efforts have paid off. Of these dozen or so genes, about nine of them have been discovered since 2013.

We’ve found that these genes can cause different types of leukemia and related conditions, including AML, myelodysplastic syndrome (MDS), acute lymphoblastic leukemia (ALL) and chronic lymphoblastic leukemia (CLL).

How common is hereditary leukemia? And when do you test patients for hereditary leukemia syndromes?

We don’t know exactly. With breast cancer, we know about 5% of cases are hereditary because massive studies have tested large groups of patients and that’s what shakes out. We haven’t had a chance to do that for leukemia. At this point, we’re only testing cancer patients when there’s a reason to think the disease has been inherited or when we believe a patients’ family members are likely to have the syndrome. Based on that, it seems that at least 5% of all leukemia may be hereditary. The number among pediatric patients is likely higher.

How do doctors test for hereditary leukemia syndromes?

Genetic testing for leukemia is different than it is for solid tumors, like breast or colorectal cancers. It can’t be done on blood or saliva. It requires a skin punch biopsy, where we take a small piece of skin and connected tissue and test that. We do this procedure because with leukemia, the cancer is actually in the blood. If you tested the blood, you’d see the genetic alterations of the disease itself. We have to get a source of DNA that’s not altered by the cancer to see a leukemia patient’s inherited genes.

What treatments do patients with hereditary leukemia typically receive?

We know that certain drugs are potentially more likely to work for people with certain syndromes. The chemotherapy drug lenalidomide, for example, may be particularly effective for people with mutations in the gene DDX41. Where it makes the biggest difference is in patients undergoing a stem cell transplant. Patients with some hereditary leukemia syndromes may benefit from a different combination of medications given as part of their transplant.

In addition, these syndromes may change the screening process for potential stem cell donors. Immediate family members — usually siblings, parents and children — are the first people we look to when the patient needs a stem cell transplant. But those family members may have the same genetic change as the patient, which may increase the odds of transplant complications if we were to use their stem cells. So we have two rounds of testing. First, we test to see if the family member is a good donor match. If so, we test to see if the potential donor has the hereditary leukemia syndrome.

If the family member does have the same syndrome and there are no other donor options within the family, we’ll look for an unrelated donor instead. If we can’t find a match, we may end up using stem cells from the family member with the syndrome, knowing that there could be complications.

Does having one of these syndromes increase the odds of recurrence? Does it impact survivorship care?

We don’t know yet if having one of these syndromes increases the odds of leukemia relapse after a patient has gone into remission.

We do know that some hereditary leukemia syndromes increase the risk for other cancers. Dyskeratosis congenita and Fanconi anemia, for example, increase the patient’s risk for developing squamous cell carcinoma. Screening for those cancers should be part of the patient’s survivorship plan. At MD Anderson, we’ve incorporated these screenings for into the survivorship care of our hereditary leukemia patients. Not all leukemia syndromes are associated with increased risks for other types of cancer, though. Some just predispose to leukemia.

If a patient has a hereditary leukemia syndrome, what does that mean for their family members?

When a patient tests positive for one of these syndromes, in most cases there’s a 50% chance that their siblings and their children each have the same syndrome. One of their parents likely has it as well.

For these family members, we recommend genetic counseling so they can learn about their own cancer risks, cancer screenings and other health issues connected to the syndrome. Some family members may also choose genetic testing to see if they carry the genetic mutation. If they test positive for the syndrome, we strongly recommend they start a screening program that can help catch the disease in its early stages, when it is most treatable.

Since these syndromes are very new, we are looking to start screening protocols with family members who have the same syndrome but haven’t developed leukemia. By following these individuals, we can learn more about the how hereditary leukemia develops, and begin to create surveillance protocols and clinical trials to reduce carriers’ risks of developing leukemia.

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

Ovarian cancer survivor: I found hope at MD Anderson

If it wasn’t for my daughter’s dog, I might never have found out that I had ovarian cancer. And if it wasn’t for MD Anderson, I might not still be here today.

Here’s my story.

My ovarian cancer symptoms

I was walking my daughter’s 65-pound Rottweiler last May, when the dog suddenly jumped up and knocked me to the ground. The left side of my body was numb when I stood up, but I didn’t seem to be hurt, so I shook it off and kept going. Ten days later, I broke out in an excruciating rash in that same area. It was so painful that I went to an emergency room. I was diagnosed with shingles.

The ER doctor prescribed a pain reliever and an antiviral medication. It took eight weeks for the rash to disappear. After it was gone, I noticed a painful lump on the left side of my abdomen. I thought maybe I’d injured myself in the fall after all, so I found a surgeon in my network and made an appointment.

When I saw the surgeon a few days later, he said I probably had a hernia, but he’d set up a CT scan just to be sure. He called me a few hours after the scan and said I needed to come in right away for the results. I had no idea what was going on, but I did what he said.

The surgeon told me that I had bilateral ovarian cancer. My ovaries were huge on both sides. I asked him what I should do. He recommended getting my affairs in order. As big as my tumors were, he didn’t think any treatment could help me. That’s when I knew I had to get to MD Anderson.

My ovarian cancer diagnosis

I’m originally from Louisiana, but I’ve lived in Houston for a while now. And MD Anderson is considered the place to go for cancer treatment. Everyone knows someone who’s been treated there. So, I called and made an appointment. Dr. Jolyn Taylor saw me within a week. The first thing she did was perform her own scans to confirm my diagnosis.

It turned out that though my tumors were large, they hadn’t spread very much, so my ovarian cancer was only considered to be stage IIb. But I did have the high-grade serous kind, which is an aggressive, fast-growing form of the disease. I needed surgery right away.

My ovarian cancer treatment

Dr. Taylor performed the eight-hour surgery to remove my tumors on Sept. 11, 2018. The one on my left ovary was about the size of a softball, and the one on my right ovary was the size of a volleyball. In addition to my ovaries, she removed my fallopian tubes, my uterus, and 16 nearby lymph nodes. She also removed a fatty layer in the abdomen called the omentum, and a part of the peritoneum, a membrane in the abdominal cavity.

Amazingly, the cancer had not spread to any of the 16 lymph nodes Dr. Taylor removed. So three weeks after surgery, I started chemotherapy. I had six rounds of carboplatin and paclitaxel. They were administered by IV every two weeks. I finished my last round on Jan. 23, 2019. And other than nausea and hair loss, I haven’t had any major side effects.

There’s always hope

Before meeting Dr. Taylor, I didn’t think I would live much longer. But she assured me that there’s always hope. And here I am today, cancer-free.

I thank God every day for my daughter’s dog now. Every time I see her, I give that dog a bone. I thank God for MD Anderson, too. Because there is hope here. And without that, what do you have?

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

Stage III triple-negative breast cancer survivor: How I handled treatment side effects

After being diagnosed with stage III triple-negative breast cancer in the summer of 2017, I was treated at MD Anderson with a combination of chemotherapy, surgery and radiation therapy.

I experienced a number of side effects from those treatments, including skin burns, lymphedema, fatigue and bone pain. Most of them are resolved now, but thankfully, the ones that remain aren’t very bad.

Dealing with lymphedema and radiation burns

The most painful side effect I experienced was probably radiation burns. Those left my skin feeling pretty raw, but applying a salve and medicated pads helped a lot. I also experienced bone pain from the Neulasta® shots I received during chemo to keep my white blood cell counts up. My joints hurt like I had the flu for several days after each injection, but exercise reduced that to just one.

The most annoying side effect I experienced was probably lymphedema, which is when fluid builds up around tissues where lymph nodes have been removed. I developed that in my left arm after having 34 lymph nodes removed surgically from my chest and neck area. I could usually get the swelling down by stretching and wearing a compression sleeve. Staying hydrated helped, too. I run every day, so I drink a lot of water, and I noticed when my water intake was low, the lymphedema was worse.

The hardest part of my breast cancer treatment

The hardest part of my treatment was undoubtedly chemotherapy. My cancer was very aggressive, so my doctors hit me with the hardest chemo they had and it absolutely wiped me out. It was really rough.

I only felt nauseous once, and I never threw up. But by the time I got home from day one of each infusion, I was so exhausted I’d just collapse. And I’d be out of commission for almost a week. There are some days I still don’t remember at all, and many times I thought I wouldn’t make it.

Fighting exhaustion with exercise

I was so tired during my treatment that I often didn’t want to get out of bed. And I didn’t feel like myself for a long time. But my faith wouldn’t let me quit. I was very active prior to starting breast cancer treatment, so I agreed to participate in a clinical trial under Dr. David Ramirez to see how exercise impacted side effects.

As part of the trial, I had to do something physically active at least five days a week. Seven was just too much. I was so weak at the beginning, I started by taking just 10 steps. The next day, I’d take 20. Then I’d try to get to the end of my driveway, then down the block. Eventually, I got back up to three miles.

The third round of chemo was the hardest. I decided I was just too worn out to exercise. So, I only worked out two days a week during that round. By the fourth round, the exhaustion had subsided. And the remaining rounds of chemo were dramatically better.

I finished up all of my treatments on Jan. 15, 2018. I have a lot of scarring now from the radiation, and I still struggle a little with fatigue. But I learned I have no evidence of disease in May. That was the only thing I’d been wanting to hear for the previous year. So don’t give up. This is only temporary.

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

Small cell ovarian cancer survivor grateful for life and new beginnings

At 26, small cell ovarian cancer was the last thing on Tabby Soignier’s mind. She wasn’t familiar with ovarian cancer symptoms, but she knew the bloating, pain and headaches she’d been experiencing meant something was wrong.

A small cell ovarian cancer diagnosis

In the summer of 2011, Tabby was busy working as a sports reporter and getting ready for her brother’s wedding. She was going to be a bridesmaid and wanted to get in shape. But no matter how healthy her diet was or how much she exercised, she just couldn’t seem to lose the weight. On top of that, she was feeling bloated and had been suffering headaches. She decided to visit a walk-in clinic in her Louisiana hometown.

The clinic doctor conducted an ultrasound and said that Tabby’s uterus had grown so much that much it looked like she was 20 weeks pregnant. But Tabby knew she wasn’t pregnant. At the clinic doctor’s suggestion, she scheduled an appointment with her gynecologist.

Tabby’s doctor conducted an ultrasound and found a 15 cm tumor wrapped around her right ovary. The doctor said she needed surgery to remove the tumor and her ovary right away. Not wanting to waste any time, Tabby opted to have it that night.

Two days later, the doctor told Tabby her tumor was malignant. A week later, after a pathologist studied the tumor, she learned she had a rare type of cancer: small cell ovarian carcinoma. Tabby and her family knew right away she needed to seek treatment at MD Anderson.

“If you’re going to go through something like this, you want the best,” she says.

Tabby’s small cell ovarian cancer treatment

Less than a week later, Tabby came to Houston for her first appointment with Kathleen Schmeler, M.D., a gynecologic oncologist. All Tabby could think about were all the things she might miss: reporting on the upcoming football season, her brother’s wedding, time with her friends and family, especially her one-year-old nephew, Nolan.

 Schmeler helped her come up with a plan, but told her to first go home and enjoy her brother’s wedding. Then, Tabby would start six rounds of chemotherapy.

Chemotherapy wasn’t easy. Tabby endured nausea and lost her hair. She traveled to Houston every 21 days and had to be hospitalized so she could be monitored around the clock, due to the extremity of the chemotherapy she was receiving. Outside her hospital room, she could hear so many other people ringing the bell — a sign that they had completed treatment — and wondered if she would ever do the same.

Then, just before Thanksgiving, Tabby got her chance.

“Ringing the bell was an incredible feeling,” she says. “I was grinning so hard my cheeks hurt.”

Thanksgiving took on a different meaning that year. Tabby entered the holiday season with gladness, but also anxiety. She had to wait almost a month after her last round of chemo to see if the treatment had worked. She returned to Houston in December for a CT scan and lab work. Twelve days before Christmas, she learned she was cancer-free.

Life after small cell ovarian cancer

Tabby continued to visit MD Anderson every three months for the next two years, and every six months after that. Over the years, she got back to living the life she loved and had missed out on during chemo. She spent time with her friends and family, continued sports reporting and eventually met her now-husband, James, on the football field.

After they got married, Tabby and James wanted to start a family right away. Because she only had one ovary, Tabby was nervous that her cancer treatment may have left her infertile. During her treatment, Schmeler had asked Tabby if she wanted to freeze her eggs, but she’d have to stop chemo to do so. Stopping treatment made Tabby nervous, and having children seemed so far away. With her immediate goal of finishing chemo in sight, she decided not to.

Not long after her wedding, she talked to Schmeler about getting pregnant. Shortly after, she had an appointment with fertility specialist Terri Woodard, M.D. Woodard explained that it would be possible for Tabby to have children, but after her cancer treatment, her lab work showed her egg count was well below the standard range.

It could be hard for Tabby and her husband to conceive on their own, and she urged them to consider in-vitro fertilization.

However, four months after meeting with Woodard, Tabby learned she had conceived naturally. She was pregnant. Nine months later, on July 30 – almost seven years to the day since she met Schmeler and started chemotherapy at MD Anderson – she gave birth to a healthy baby boy, James Jr.

“You couldn’t ask for more than just living,” she says. “But to bring life into this world is just tremendous.”

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

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