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Last week, "Good Morning America" host Robin Roberts revealed Monday she has myelodysplastic syndrome (MDS) a blood and bone marrow disorder characterized by the production of blood cells.

The 51-year-old co-host says she developed MDS after treatment for breast cancer in 2007.

Selina Luger, MD, is director of the leukemia program at Penn Medicine. She says previous cancer treatment with chemotherapy or radiation can be a risk factor for developing MDS. Dr. Luger is not treating Robin Roberts but has experience treating patients with this disease.

“Most people who develop MDS have not had prior chemotherapy or radiation treatment for cancer,” says Dr. Luger. “However, there is a small percentage of people who may develop MDS 18 to 24 months or 5 to 7 years after their treatment for cancer, depending on the type of treatment they received.”

What is MDS?

To understand MDS, it’s helpful to understand how it affects the body. In the body, there are three main types of cells that circulate in the blood:

1. Red blood cells carry inhaled oxygen from the lungs to the rest of the body, and carry carbon dioxide from the body to the lungs to be exhaled.
2. Platelets help blood clot.
3. White blood cells help the body fight off infection.

Blood cells originate in the spongy material inside the bones called bone marrow. In people with MDS, bone marrow stem cells do not mature properly. They create immature blood cells called blasts, which are not capable of becoming fully functional white blood cells, red blood cells or platelets. If left untreated, the number of normal blood cells continue to decrease, resulting in significant impairment of quality of life or an increase in the number of blasts resulting in progression to acute leukemia.

In either case patients are at risk of life threatening complications most often because of infections or bleeding that cannot be controlled.

“When bone marrow is not functioning properly, blood counts become low and people have symptoms or complications related to those low blood counts,” says Dr. Luger. “Most people learn they have MDS after going to their doctor because they are tired. They may be anemic, and tests might reveal abnormalities.”

Treatment of MDS can either manage symptoms of the disease if the disease is not aggressive, or can be very aggressive if the disease warrants it.

“Most patients are treated for low blood counts with transfusions and other medications that provide supportive care, but those provide only temporary benefits,” says Dr. Luger. “In patients with an aggressive MDS, a bone marrow transplant offers the only chance for a cure.”

Bone Marrow Transplant for MDS

In the past the only treatment option, other than supportive care, available for patients with MDS was a traditional myeloablative bone marrow transplant from a donor (allogeneic). The patient receives massive doses of chemotherapy with or without radiation to destroy existing abnormal cells. The patient then receives bone marrow from a donor – if possible someone related. Those cells populate the body, replacing the unhealthy bone marrow cells with healthy donor bone marrow cells. Also, the bone marrow and blood cells bring with them a new immune system, which continues long term to fight off abnormal cells in a way that the patient’s immune system hadn’t previously done. Unfortunately, however, sometimes the new immune system also sees the patient’s body as foreign and tries to attack it, causing something called ‘graft versus host disease” which can be life threatening.

Although the only potentially curative option, a traditional bone marrow transplant is risky, and limited to patients under age 55 because the risks increase with age. Until recently, many patients with MDS did not have any treatment options other than supportive care, since the majority of patients are over age 60.

“Over the last five to 10 years, we have developed significant advances in the treatment of MDS. We now know that transplants don’t have to be myeoablative (irreversibly destroy the bone marrow) in order to be successful. We now do ‘mini’ or ‘reduced intensity’ transplants that are suitable for patients up to 75 years of age,” says Dr. Luger.

In a reduced intensity-transplant, less aggressive chemotherapies which don’t kill off the patient’s bone marrow cells, are used to prepare the patient’s body to accept the donor cells. Once the transplant takes place, the new marrow engrafts and over time the donor’s immune system destroys the cancer cells that are there. This is also referred to as a “graft versus tumor” effect.

Also, thanks to research and clinical trials that have been done, there are new drugs available for patients with MDS. Some of them have been shown to improve the blood counts and as a result improve quality of life of these patients, while others, while not curative have been shown to improve survival in patients with aggressive MDS.

Treatment for MDS at Penn

Penn hematologists/oncologists are national leaders in the treatment of MDS and other blood and bone marrow cancers as well as in bone marrow and stem cell transplant.

The Abramson Cancer Center also has one of the few hematologic malignancy research programs in the country approved and funded by the National Cancer Institute.

“Patients at Penn have access to the best treatment available for MDS as well as the latest clinical trials for MDS and leukemia,” says Dr. Luger..”

Learn more about bone marrow transplant for MDS at the Abramson Cancer Center.

Learn more about MDS at Oncolink.

Bone marrow transplantation (BMT) treats multiple myeloma, leukemia and lymphoma.

High-dose chemotherapy (and sometimes radiation oncology therapies) can affect the bone marrow. Stem cells in the bone marrow make the cells that carry oxygen through the body, fight infection and help blood clot, A bone marrow transplant replaces the patient’s bone marrow with disease-free bone marrow from a healthy marrow donor. Bone marrow donors are often family members, but may also be unrelated to the patient.

Treatment outcomes for bone marrow transplant have improved over the years. However, there are risks associated with bone marrow transplant. Patients who receive a bone marrow transplant may suffer from a graft-versus-host disease, in which the their immune system attacks the donor marrow cells.   Patient’s immune systems are compromised after such intense chemotherapy and graft-versus-host disease can cause serious complications or even death.

Emotions after a bone marrow transplant

Bone marrow transplants also come with a lot of stress. Full recovery of the immune system may take up to two years, placing a great deal of worry and anxiety on both patients and their families.

While many people might assume the most stressful part of treatment involves the decisions made beforehand and the time spent in hospital, life after a bone marrow transplant presents many challenges.

During the early weeks after leaving the hospital patients still have weakened immune systems and their social contact often needs to be restricted.

Other common complaints include poor sleep, memory problems, poor concentration, lack of appetite, nausea, and less sexual desire. Even after one year, bone marrow transplant recipients often report decreased energy and strength, as well as excessive fatigue.

For many, the hope of a quick return to feeling normal is often transformed into frustration. Bone marrow transplant recipients may also struggle with fears and uncertainly about relapse and their long-term health. As a result, even when physical symptoms improve, anxiety and worry may remain a problem for some time.

This frustration can result in depression as recipients come to terms with new issues in their lives such as increased isolation, loss of control, disruption in their work-life and changes in their role within the family and in relationships.

They may also struggle with guilt over feeling like a burden to others in their post-transplant lives. Prolonged and deepening depression is often a sign that further help is needed and the medical team can often help with the decision to seek help from a therapist and/or start anti-depressant medications.

A good outlook after bone marrow transplantation

The good news is that most bone marrow transplant recipients adjust well to life post-transplant. A key factor in coping is having strong emotional support from loved ones.

Support can include:

• Listening to feelings and anxiety.
• Acknowledging together new limitations of strength and energy.
• Accepting help from others including support groups and professionals.
• Checking in to see how everyone is doing emotionally.
• Encouraging each other to talk about feelings.

Bone marrow transplant recipients also tend to fare better if they have realistic expectations about their recovery. It is important to spend time before the transplant with the medical team discussing the recovery process. Knowing that recovery can be slow is often a protection against disappointment and unnecessary fear.

Finally, it is also crucial to have positive goals to work towards and a reason to want to feel better. While life can often be put on hold by a BMT, hope and determination can give shape and direction to a fuller life post transplant.

When to get help

If anxiety and depression is not addressed, it can affect the physical recovery on a bone marrow transplant recipient. It’s important for people experiencing these feelings to reach out to a professional for help. If interested in speaking with a counselor, please notify a member of you medical team.

Learn more about the bone marrow transplant and stem cell transplant program at the Abramson Cancer Center.

Learn more about the stem cell transplant program at the Joan Karnell Cancer Center.

Learn more about managing cancer treatment side effects.