Late Effects

Remembering to plan for the future, unfortunately, also includes  ensuring I remember to keep a close eye on Sammy for possible "Late Effects" which may or may not occur to any degree.  They do happen enough for a term to have been created, and for follow-up clinics to have been established.  Yale and Sloan Kettering are the ones closest to us at the moment.  Sammy will not need them until he is two years off treatment....I am making notes now so I have a reference for the future.  This page is for me.  If it helps others, great.  It is not meant to inform others of anything as I am not a specialist or reliable source.  Full information can be found at:

Second Malignancies:

Radiation kills cancer cells and also may cause changes in normal cells. In some cases, second cancers develop in the areas irradiated. Leukemia survivors treated with cranial radiation have a small risk of developing brain tumors. In addition, some radiation (called "scatter") escapes into the areas surrounding the radiation field. Survivors who had radiation to the head or chest can develop late effects in the thyroid gland or salivary glands from scatter radiation. These areas as well as the radiation field should be routinely evaluated during follow-up appointments. In general, the higher the dose of radiation you received, the greater your risk of developing a second cancer.

Bone Health after Childhood Cancer:

The following groups of survivors appear to be at risk for developing osteoporosis at a younger age:
  • Survivors with premature or early puberty tend to have an early end of their growth spurts, thus may not reach a normal peak bone mass.
  • Survivors who took or take medications such as glucocorticoids (prednisone, dexamethasone) and/or methotrexate can have decreased bone mass. Steroids have a direct effect on bone, causing problems with bone formation, decreased calcium absorption from the intestine, and increased excretion of calcium through the kidneys.
  • Survivors who had whole brain or cranial radiation.
  • Survivors who were bed ridden for long periods.
  • Survivors who do not exercise during and after treatment. Weight bearing exercise (walking, jogging, most sports) causes bone mass to increase.
  • Survivors who have inadequate calcium intake
Two very important things can be done by all survivors to lower their risk: be physically active and take adequate calcium.

Exercise and a physically active lifestyle.  If a survivor picked the one thing that would have the greatest impact on his/her life and lower the risk for a number of late effects and common adult health problems, it would be to make a lifetime habit of being physically active. Regular exercise, four times a week for about thirty minutes, makes a huge difference in the strength of our bones.


Most people do not have an adequate amount of calcium in their diet. The National Osteoporosis Foundation recommends that all adults have a daily dietary intake of 1000 to 1200 mg of calcium each day. Some physicians recommend that survivors get 1500 mg a day. The main sources of calcium in the diet are dairy products (milk, yogurt, cheese) and green, leafy vegetables.

Calcium in foods:
Milk (8 ounces) 300 mg
Yogurt (8 ounces) 400 mg
Cheese (1 ounce) 200 mg
Broccoli (1/2 cup) 47 mg
Pinto beans (1/2 cup) 40 mg

An excellent web site with a calculator to help determine the amount of calcium in your diet is
If your diet is low in calcium and you are unable to get the level up to 1200 to 1500 mg per day, then taking a calcium supplement pill is recommended. A wide variety of calcium supplements are available at the grocery or health food store. See the following web site for a discussion of calcium pills:

Other important things that a survivor can do to lower the risk for osteoporosis:
  • Don't smoke
  • Don't drink more than one alcoholic drink per day (e.g. 12 oz. beer or 5 oz. of wine or 1.5 oz of 80-proof distilled spirits)
  • Avoid excessive intake of caffeinated products-they can increase the loss of calcium through the kidneys and drain off skeletal calcium
  • Avoid excessive consumption of carbonated soft drinks
Peak bone mass can be measured by a number of different methods, with dual energy x-ray absorptiometry (DXA or DEXA) being the most widely used technique. From this special x-ray of two or three sites (hip, wrist, low back), the bone density can be calculated. DXA has a low radiation dose and is fairly precision and accurate. The bone mineral density is reported as a "T-score", which is a comparison to the peak bone mass of young adults in the general population. Osteopenia (low bone mass) is a T-score between -1.0 and -2.5 standard deviations (SD; a unit of variation), while osteoporosis is defined as a T-score of < -2.5 SD. A single test, such as a DEXA, tells us how the bone mass is only at that time and does not tell you how rapidly calcium is being lost from the bone. A follow-up DEXA, generally one or two years later, can show how the bone mass is changing over time.

Osteonecrosis: A Source of Bone Pain and Loss of Function in Childhood Cancer Survivors:
Among individuals with a history of cancer, corticosteroid therapy is considered the major risk factor for the development of osteonecrosis. Survivors with a history of acute lymphoblastic leukemia (ALL) and various types of lymphoma represent most of the individuals who previously received corticosteroid therapy. Previous studies have estimated that somewhere between 1.7 and 7.9% of acute lymphoblastic leukemia (ALL) survivors develop osteonecrosis in the first 3-5 years after diagnosis. Among ALL patients who receive corticosteroid therapy, the following patient characteristics are particularly associated with an increased risk of developing osteonecrosis: Anthracyclines and the Heart:

Over half of the survivors who received anthracyclines (Adriamycin - doxorubicin; Cerubidine - daunorubicin; Idamycin - idarubicin) will have some damage to the heart muscle that can be detected with sophisticated testing. The percentage of survivors with some damage who will experience progressive weakening of their heart muscle and develop congestive heart failure is not known. It is likely that most survivors who have mild changes in heart functioning will not have increasing damage and will never develop symptoms.  From studies to date, we know that patients treated with moderate to high dosages of an anthracycline are at higher risk.

Weight lifting - Isometric exercises, such as weight lifting, can cause an acute decompensation (significant worsening of heart function at the time of weight lifting). Heavy weight lifting can be dangerous if a survivor has some weakening of the heart muscle, and so other forms of exercise are recommended. Weight lifting with high repetition and low weights is probably not a problem.
Most survivors who received radiation will not have a problem with their heart. But in some, the radiation can damage the heart in one of several ways, including damaging the heart muscle, the valves, or the coronary arteries.
  • Cardiomyopathy
  • Radiation can also damage the valves in the heart, especially the two valves on the left side of the heart (mitral and aortic). If a valve is damaged, it can lead to either being "leaky" so that blood flows backwards into the chamber it came from or it can be stiff and not open very well, slowing the flow of blood. This can lead to congestive heart failure and other problems with the heart.
  • Premature coronary artery disease. The network of small blood vessels on the outside of the heart feed the heart muscle with oxygen and nutrition. The interiors of healthy blood vessels are smooth. Radiation can roughen the inside of blood vessels. These rough spots provide a site for fatty deposits (plaques) to develop in coronary arteries and other arteries and veins. Calcium deposits can harden the plaques resulting in atherosclerosis (hardening of the arteries).
Dental Health:

Tooth/root agenesis

Root thinning/shortening

Enamel dysplasia

Sammy needs dental exam and cleaning every six months.

Non of this refers to cognitive or emotional/psychological issues as it is my intention to get Sammy evaluated for this each academic year.  We began last year and Stamford Schools created an amazing 504 plan for him to acommodate his physical disabilities.  No congitive or learnign issue were detected.  To date (Jan 2011) no cognitive effects are evident. 

  • Age >10 years at diagnosis of cancer
  • Female gender
  • More intense therapy: for example high risk acute lymphoblastic leukemia (ALL) patients have a higher risk than low risk ALL patients.

The most common corticosteroids used in cancer therapy are prednisone and dexamethasone. It is not known exactly how corticosteroids cause osteonecrosis. Some investigators think that corticosteroids interfere with the body's ability to break down fatty substances. Then the fatty substances can build up and clog blood vessels which supply blood to the bone. Some studies also suggest that corticosteroids directly kill bone cells.

Mercaptopurine (6MP):
  • Hepatic dysfunction
  • Veno-occlusive disease (VOD)


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