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Survivorship Guide for Bone Marrow/Stem Cell Transplant
Coping with Late Effects

Bones

Two of the most common reasons for bone pain post transplant come from osteoporosis-related fractures and avascular necrosis. If you are experiencing bone pain, it is important to follow up with your doctor to determine the cause of the pain and to treat it. Bone deterioration may occur without symptoms. Pain may slowly increase or erupt suddenly due to bone fracture or collapse. The earlier that bone deterioration is caught, the more effectively it can be treated.

Osteoporosis and Osteopenia

Osteopenia is a condition where bone mineral density is lower than normal. Individuals with osteopenia are at risk for developing osteoporosis, which is a condition where there is further bone loss and a high risk of bone fractures. People with osteoporosis will often not experience any symptoms until there is a bone fracture. Bone fractures are painful and can occur anywhere in the body, including the spine.

Years of prednisone use has created osteoporosis, and I am at very high risk for bone fractures. I have had four stress fractures including my left hip, which has three titanium pins holding it together. I was on crutches for ten weeks after the surgery to repair my hip. My various orthopedic fractures required me to walk in special “ortho” boots, and that threw my hips and back out of whack. Physical therapy and yoga have helped me greatly in regaining my strength and balance. I take vitamin/mineral supplements as well as two bone density drugs, one of which I inject daily.

Transplant survivors are at higher risk for developing osteoporosis because of their exposure to radiation, chemotherapy, and the use of steroids, such as prednisone. Early menopause and low estrogen levels can also contribute to bone thinning. All transplant survivors should have their bone density checked so that bone loss can be detected early and treated.

The best treatment for osteopenia and osteoporosis is a holistic approach that includes medication, nutritional changes, and exercise. There are a number of effective medications that can slow down, prevent, and, in some cases, reverse bone loss. These medications should be supplemented with daily calcium and vitamin D, which are important for bone health. Weight-bearing exercises to strengthen the bones should also be incorporated into your daily routine. Weight-bearing exercises include brisk walking, weight training, dancing, jogging, and aerobics. Virtually every gym has a trainer who can help you design a fitness program to meet your needs.

If you already have some bone loss, it may be important to avoid high impact exercises that carry a high risk of falls or bone fracture. The risk of falls and injury can also be reduced by engaging in exercises such as yoga and T’ai Chi that improve balance, core strength, and flexibility. Talk to your doctor to make sure that your exercise routine is appropriate, and then go get that body moving!

For post-menopausal women, hormone replacement therapy with estrogen is also an effective way to slow bone loss. However, given the controversy around estrogen therapy, treatment with estrogen should only be started after careful consideration and in consultation with your doctor.

Avascular Necrosis (AVN)

Avascular necrosis (AVN) is a condition that occurs when the blood supply to the bones is damaged, causing them to break down faster than the body can rebuild them. Left untreated, bone tissue can die and collapse. Joint pain is usually the first symptom of AVN. It tends to start in the hips, but can also occur in other joints such as the knees, shoulders, ankles, and wrists. AVN in long-term survivors is generally caused by the use of high-dose steroids, such as prednisone.

My right hip is very painful because the right femoral nerve is dead, so the hip is dying and getting worse. I have avascular necrosis in both hips and my right thigh is totally numb. I guess there is no choice but to learn to live with this stuff.

I had avascular necrosis of the hip a couple of years ago, and then had my hip replaced the following year. I am now doing well.

Treatments for AVN include medication to prevent bone degeneration, use of crutches or braces to reduce weight and pressure on the joint, range of motion exercises, and treatments such as electrical stimulation to promote the growth of new blood vessels and bone tissue.

If AVN is caught early, a surgical procedure called core decompression can also be used. In this procedure, a limited amount of dead bone can be removed from the joint to relieve pressure, helping the body to restore blood supply to the bone. Certain centers will also replace the dead bone tissue that is removed with healthy bone taken from a different part of the body to strengthen and bring more blood to the injured joint. Total joint replacement is also an option if AVN is more advanced.

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