Saturday, August 23, 2008

Kevin's Cancer FAQs - Medulloblastoma

Hopefully this will help answer some of the questions we get. Please feel free to email us any other questions you might have. We are learning lots as we go. I will try to share what I can. - Rachel

What is cancer?
Cancer is a group of diseases in which cells are aggressive (grow and divide without respect to normal limits), invasive (invade and destroy adjacent tissues), and sometimes metastatic (spread to other locations in the body). These three malignant properties of cancers differentiate them from benign tumors, which are self-limited in their growth and don't invade or metastasize (although some benign tumor types are capable of becoming malignant). Cancer may affect people at all ages, even fetuses, but risk for the more common varieties tends to increase with age. Cancer causes about 13% of all deaths. According to the American Cancer Society, 7.6 million people died from cancer in the world during 2007.

How did Kevin get cancer?

We don't really know. From our understanding there is no cancer gene running in either side of Kevin's family, but Kevin did test positive for the mutated gene which caused cancer. How it mutated we have yet to figure out. I highly recommend the Nova program I placed a link to in the previous post.

What kind of cancer does Kevin have?
He has malignant brain cancer that was removed with surgery in Feb. 2008. Medulloblastoma is a highly malignant primary brain tumor that originates in the cerebellum or posterior fossa. Medulloblastoma is one of the most common primitive neuroectodermal tumors (PNET) originating in the brain. All PNET tumors of the brain are invasive and rapidly growing tumors that, unlike most brain tumors, this one can spread through the cerebrospinal fluid (CSF) and frequently metastasize to different locations in the brain and spine. Brain tumors are the second most common malignancy among children less than 20 years of
age. Medulloblastoma is the most common malignant brain tumor, comprising 14.5% of newly diagnosed cases.

What happened to his hair?

Kevin's hair first fell out in April, after weeks of craniospinal radiation with a couple of week of 'tumor boost' where they targeted a higher dosage where the tumor used to be at the back of his head. Before starting chemotherapy in May, Kevin's hair actually came back a little. Since high dose chemotherapy and stem cell transplants Kevin's hair on his head, eye brows and eye lashes have almost all fallen out . Doctors have told me that his hair may never came back fully as a result of the high doses of radiation and the cumulative chemotherapy. It is likely that some of the hair follicles on his head are permanently dead, but it could come back years from now. There is just no way to know.

What is chemotherapy?
Chemotherapy, or "chemical treatment," has been around since the days of the ancient Greeks. However, chemotherapy for the treatment of cancer began in the 1940s with the use of nitrogen mustard (mustard gases used in chemical warfare). Since then, in the attempt to discover what is effective in chemotherapy, many new drugs have been developed and tried. Sometimes referred to simply as "chemo", chemotherapy is used most often to describe drugs that kill cancer cells directly. These are sometimes referred to as "anti-cancer" drugs or "antineoplastics." Today's therapy uses more than 100 drugs to treat cancer. There are even more chemo drugs still under development and investigation. Chemotherapy is a general term used to describe dozens of different medications that all work to kill cancer cells. The reason chemotherapy is a difficult process to go through is because it kills all cells, not just cancer cells. This causes many side effects such as compromised blood counts which can lead to a compromised immune system, infection, fatigue and bleeding.

What is radiation therapy?

Radiation therapy (or radiotherapy) is the medical use of ionizing radiation as part of cancer treatment to control malignant cells (not to be confused with radiology, the use of radiation in medical imaging and diagnosis). Radiotherapy may be used for curative or adjuvant cancer treatment. It is used as palliative treatment (where cure is not possible and the aim is for local disease control or symptomatic relief) or as therapeutic treatment (where the therapy has survival benefit and it can be curative).

Kevin received radiation to his head and and spine in 33 treatments in a little over 6 weeks.

What is remission?

Remission is every cancer survivor's favorite word. It is hard to get most oncologists to say, but with coaxing and lots of treatment it is possible. I have heard it a couple times. Remission is the state of absence of disease activity in patients with known chronic illness. It is commonly used to refer to absence of active cancer. Remission can be reached multiple times. Each type of cancer has different markers and milestones that indicate true remission and long term survival.

Is there a cure for cancer?
Some types of cancer have cures. Most do not. There is no "cure" for the kind of cancer Kevin has, but we have personally met many people who are long term cancer survivors. Rapid advances in cancer research and treatment are very promising. All we can do is keep on fighting until there is a cure. Cancer is a chronic illness, something you live with and treat.

What are late effects of cancer?

(taken from 'Childhood cancer survivors, though being “cured” of cancer, often experience late effects, both physical and psychological, secondary to their cancer or its treatment. Complications, disabilities, or adverse outcomes that are the result of the disease process, the treatment, or both, are generally referred to as “late effects.” Late effects may be easy to identify because of their visibility (e.g., amputation) or direct effects on function (e.g., severe cognitive impairment). Other late effects, however, can be subtle and apparent only to the trained observer (e.g., scoliosis or curvature of the spine) or not directly observable and identified only through screening or imaging tests (hypothyroidism, infertility). In addition to concerns about a recurrence of the cancer for which they were treated, cancer survivors are also at increased risk of developing a second type of cancer because of either their treatment for cancer (e.g., radiation), their genetic or other susceptibility, or some interaction between treatment and genetic susceptibility.

Some late effects of therapy are identified early in follow-up—during the childhood or adolescent years—and resolve without consequence. Others may persist, become chronic problems, and influence the progression of other diseases associated with aging. For example, renal dysfunction secondary to treatment with the chemotherapeutic agent ifosfamide may be accelerated if the survivor develops hypertension or diabetes mellitus, two common adult health problems (Prasad et al., 1996; Skinner et al., 2000).

Chemotherapy, radiation therapy, and surgery may all cause late effects involving any organ or system of the body.' To read more click here

Brain cancer late effects
• Neurologic and cognitive effects (e.g., learning disabilities)
• Abnormal growth and maturation
• Hearing loss
• Kidney damage
• Hepatitis C
• Infertility
• Vision problems
• Second cancers

Are childhood cancer rates on the rise or do we have better detection?
The answer to this question is different, depending on who you ask. According to Chemical Industry, an environmental watchdog cancer rates for children are increasing. According to their website:

'Fact #4: Cancer rates are up, particularly for cancers that affect the young

Cancer incidence increased steadily between 1973 and 1996, and probably for longer than that, although the government did not keep track of cancer rates before 1973. The increase was consistent across many types of cancer, from breast cancer, that increased steadily at 1.5 percent per year, to prostate cancer, that skyrocketed at 4.4 percent per year. Overall, cancer incidence in the U.S. rose by 1.1 percent per year during that time, or about 11,000 more cancers per million people each year. For some cancers the increase appears to have leveled off, but for many other cancers, rates continue to rise (NCI 1996, NCI 1997).

Isn't this just because people are living longer?
No. All of the rates represent the increase after accounting for an aging population.

Isn't the increase just the result of better detection?
For some portion of some cancers better detection explains the increase, but better detection does not account for the overall dramatic increases in cancer incidence that have occurred in the past 30 years (Ekbom 1998, NCI 1996, NCI 1997).

Childhood cancers on the rise
In the 20 years from 1975 to 1995, childhood cancer rates rose 20 percent, from 128 cases per million children in 1975 to 154 cases per million in 1995. Between 1992 and 1996, 20 of every 100,000 preschool-age children (four and younger) were diagnosed with cancer, or 200 times the one in a million lifetime risk level at which the federal government attempts to set regulations controlling chemical exposures. (NCI 1996)

Childhood leukemia: Leukemia, the most common childhood cancer, increased by about 17% between 1973 and 1996 (from 23 to 27 cases per million children) (EPA 2000).

Childhood brain cancer: The incidence of brain and other central nervous system tumors in children rose by 26% between 1973 and 1996 (EPA 2000).' -

Disclaimer: We are not scientists, nor doctors but we are concerned parents who have a child who life has changed dramatically because of this disease. Our information is complied from reading lots of books, talking to doctors, other parents in similar situations and trying to read anything we can. This are the answers we have found right now.

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