--- Begin Message ---
ASSWB.
Maaf agak terlambat membalas.
Saya coba cari yang sederhana dan diattachment. Mudah2an bisa berguna.
Salam untuk Weti dan anak2
---------- Original Message ----------------------------------
From: uray alisjahran <[EMAIL PROTECTED]>
Date: Mon, 14 May 2007 12:23:01 +0200 (CEST)
>Ass.wr.wb.
>
>Menyambung pembicaraan dr sms tadi, baiklah saya ambil singkatnya saja
>berhubung saya hrs segera berangkat ketempat kerjaan.
>
>Pertama saya mengucapkan terima kasih atas waktu yang disediakan Pak Arie
>untuk saya.
>Saya hanya mohon sedikit informasi saja mengenai Neuroblasma.
>Ini suatu kebetulan saja yangmana ada salah seorang dr milisgroups singkawang
>yang mendapatkan informasi tentang Neuroblasma.
>
>Untuk jelasnya email dr yang bersankutan saya lampirkan dibawah ini.
>
>Dear Kawans,
>g Alang, maaf kalo g ganggu teman2 ngebahas masalah kalender ato masalah
>politik lainnya.
>G pengen minta informasi mengenai sejenis penyakit kanker dengan nama
>Neuroblastoma (kanker saraf)......
>g udah punya sedikit data mengenai penyakit ini, cmn masih kurang jelas, oleh
>karena itu g minta bantu dari teman2 semua, asal gak ngerepotin kalian aja.
>Sebelumnya g ucapkan terima kasih atas bantuan dan perhatiannya
>
>
>Sebelum dan sesudahnya saya ucapkan terima kasih.
>
>Kapan Pak Arie dan istri punya rencana ke jerman lagi. Kami tunggu.
>
>Salam kangen,
>
>Wassalam,
>
>Ali, wetty, Astrid & Dita.
>
>
>---------------------------------
>Yahoo! Clever - Sie haben Fragen? Yahoo! Nutzer antworten Ihnen.
>
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<P><FONT color=#000033>Resources and information for parents of children with
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<H3 class=h3dec>Site Links</H3>
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<H3 class=h3dec>Reference</H3>
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<LI class=nav><A class=navlinks
href="http://www.acor.org/ped-onc/glossaries.html";>Glossaries</A>
<LI class=nav><A class=navlinks
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<UL>
<LI class=nav><A class=navlinks
href="http://www.acor.org/ped-onc/diseases/leuk.html";>leukemias</A>
<LI class=nav><A class=navlinks
href="http://www.acor.org/ped-onc/diseases/neuro.html";>neuroblastoma </A>
<LI class=nav><A class=navlinks
href="http://www.acor.org/ped-onc/diseases/brain.html";>brain cancers</A>
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<LI class=nav><A class=navlinks
href="http://www.acor.org/ped-onc/diseases/germcell.html";>germ cell tumors
</A>
<LI class=nav><A class=navlinks
href="http://www.acor.org/ped-onc/hp/otherpages.html";>other types </A>
<LI class=nav><A class=navlinks
href="http://www.acor.org/ped-onc/diseases/SOCC.html";>signs of childhood
cancer </A>
<LI class=nav><A class=navlinks
href="http://www.acor.org/ped-onc/diseases/causes.html";>causes of childhood
cancer </A>
<LI class=navlast><A class=navlinks
href="http://www.cancer.gov/cancertopics/treatment/childhoodcancers";>cancer.gov
childhood cancer link</A><A class=navlinks
href="http://www.acor.org/ped-onc/diseases/neuro.html#misc";> </A></LI></UL>
<H3 class=h3dec>on this page</H3>
<DIV align=left>
<UL>
<LI class=nav><A class=navlinks
href="http://www.acor.org/ped-onc/diseases/SOCC.html#neuroblastoma";>symptoms
of neuroblastoma</A>
<LI class=nav><A class=navlinks
href="http://www.acor.org/ped-onc/diseases/neuro.html#diagnosis";>diagnosis</A>
<LI class=nav><A class=navlinks
href="http://www.acor.org/ped-onc/diseases/neuro.html#screening";>screening
for
neuroblastoma</A> </LI></UL></DIV>
<UL>
<LI class=nav><A class=navlinks
href="http://www.acor.org/ped-onc/diseases/neuro.html#histology";>histology
and
cytogenetics</A>
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href="http://www.acor.org/ped-onc/diseases/neuro.html#treatment";>treatment
</A>
<LI class=nav><A class=navlinks
href="http://www.acor.org/ped-onc/diseases/neuro.html#stats";>statistics </A>
<LI class=nav><A class=navlinks
href="http://www.acor.org/ped-onc/diseases/nbFAQ.html";>neuroblastoma faqs </A>
<LI class=nav><A class=navlinks
href="http://www.acor.org/ped-onc/diseases/neuro.html#resources";>ped-onc
resources </A>
<LI class=navlast><A class=navlinks
href="http://www.acor.org/ped-onc/diseases/neuro.html#links";>links to more
info </A></LI></UL></DIV>
<DIV id=main>
<H1 class=h1main>Neuroblastoma</H1>
<P class=main>Recommended: <A class=sect
href="http://www.cancer.gov/cancertopics/pdq/treatment/neuroblastoma/healthprofessional";>NCI
PDQ for Neuroblastoma<I><BR></I></A>On this site: <A class=sect
href="http://www.acor.org/ped-onc/diseases/SOCC.html#neuroblastoma";>Warning
Signs of Childhood Cancer: Neuroblastoma</A></P>
<P class=main><FONT size=5>N</FONT>euroblastoma is a cancer of the sympathetic
nervous system, a nerve network throughout the body that carries messages from
the brain. (See a picture and description of the sympathetic nervous system on
the Dr. Eric Chudler's <A class=sect
href="http://faculty.washington.edu/chudler/neurok.html";>Neuroscience for
Kids</A> pages.) Neuroblastoma is a solid, malignant tumor that manifests as a
lump or mass in the abdomen or around the spinal cord in the chest, neck, or
pelvis. Neuroblastoma is often present at birth, but is most often diagnosed
much later when the child begins to show symptoms of the disease. A condition
known as "opsoclonus-myoclonus syndrome" can sometimes be a symptom of
neuroblastoma. It<FONT size=2> </FONT>is bursts of rapid and involuntary,
chaotic eye movement in all directions. It's important to note that not all
children with this syndrome have neuroblastoma. In the majority of cases (73%),
neuroblastoma has already spread to areas outside of the original site at the
time of diagnosis.</P>
<H2 class=main><SPAN class=red>Diagnosis</SPAN><A name=diagnosis></A></H2>
<P class=main>Diagnosis of neuroblastoma can be complicated. It has been called
the "great masquerader" because its symptoms mimic so many other diseases. Even
a pathological study (biopsy) might reveal cells that can resemble other small
round blue tumor cells, like lymphomas and rhabdomyosarcomas. Only a
pathologist
familiar with neuroblastoma can distinguish the difference (and neuroblastoma
is
rare). Other characteristics of the suspected neuroblastoma cells can be
studied
by immunohistochemistry and electron microscopy. In about 90% of cases of
neuroblastoma, elevated levels of catecholamines or its metabolites are found
in
the urine or blood. Catecholamines and its metabolites include dopamine,
homovanillic acid (HVA), and/or vanillylmandelic acid (VMA).</P>
<P class=main>Another way to detect neuroblastoma is the mIBG scan
(meta-iodobenzylguanidine), but it doesn't diagnose the disease in 100% of the
cases. It works like this: mIBG is taken up by sympathetic neurons, and is a
functioning analog of the neurotransmitter norepinephrine. When it is
radio-ionated with I-131 (a radioactive iodine), it is a very good
radiopharmaceutical for diagnosis of this disease.</P>
<P class=main>To make a definite diagnosis of neuroblastoma and enter a
clinical
trial, certain criteria have to be met. A pathologic diagnosis from actual
tumour tissue OR bone marrow contains tumour cells AND urine contains increased
urinary catecholamine metabolites. (HVA and VMA).</P>
<H2 class=main><SPAN class=red>Screening for Neuroblastoma</SPAN><A
name=screening></A></H2>
<P class=main>Of all the diagnostic tests listed above, the test for urinary
catecholamine metabolites is non-invasive, inexpensive, and easy. So, why not
use it to screen all children for neuroblastoma?</P>
<P class=main>Screening studies have been conducted in Japan, England, and
parts
of North America. The studies check the urine of infants for abnormal levels of
catecholamines, in the hope of earlier detection to improve prognosis. However,
whether or not this is effective depends on whom you ask. Many oncologists
disagree on the benefits of such a test. There have been instances of false
positives, and this is where many of them take issue. A study in Kyoto, Japan,
demonstrated that mass screening can improve the survival rate for diagnosed
neuroblastomas. However, a study done in England did not yield the same
results.
Out of 20,829 children tested, 2 showed positive for the disease, 8 were false
positives, and 3 were missed all together on screening, but later presented
with
the disease. The study concluded that this type of screening is possible, but
requires more study."</P>
<P class=main>Children picked up as having neuroblastoma through screening tend
to have excellent prognostic indicators. These children have a higher incidence
of spontaneous regression, and treatment may not be necessary. Many researchers
believe that if the disease had not been detected through screening, they may
have never been diagnosed. The disease would simply disappear (spontaneously
regress) on its own. Therein lies the dilemma. Once a diagnosis is made,
physicians generally have an ethical obligation to treat. This may be
unnecessarily exposing a child to the potentially harmful side effects of
anti-cancer therapy, some of which are long-term.</P>
<P class=main>Further reading on screening for neuroblastoma:</P>
<UL>
<LI class=bulletedlast><A class=sect
href="http://www.meb.uni-bonn.de/cancernet/306393.html";>MedNews from NCI</A>
</LI></UL>
<H2 class=main><SPAN class=red>Histology and Cytogenetics</SPAN><A
name=histology></A></H2>
<P class=main>Your child's cancer cells exhibit a defined "histology", or
profile of molecular and biological characteristics. These features are often
indicators of treatment success and some of them direct treatment decisions to
more or less intensive protocols. The characteristics below are known to be
important in neuroblastoma:</P>
<P class=main><B>N-myc amplification</B>. N-myc is an oncogene, or a gene (DNA
sequence) that turns on cell growth. Amplification means that more than one
copy
is found in the cell.</P>
<P class=main><B>Hyperploidy</B>. A normal cell has 46 chromosomes. Cancer
cells
often have extra chromosomes, and this is termed "hyperploidy".</P>
<P class=main><B>VMA/HVA ratio.</B> This is the ratio of catecholamine
metabolites found in the urine.</P>
<P class=main><B>NSE</B>. Neuron-specific enolase, a serum marker. This is an
enzyme specific to the sympathetic nervous cells from which the neuroblastoma
derives.</P>
<P class=main><B>Serum ferritin</B>. An accurate estimate of the body's iron
stores; a serum marker.</P>
<P class=main><B>LDH</B>. Lactate dehydrogenase (LDH) is a group of enzymes
that
have a similar biological activity; a serum marker.</P>
<P class=main><B>Gd2</B>. Presence of this serum marker (a sialic
acid-containing glycosphingolipid) may play a role in faster tumour
progression.</P>
<P class=main><B>CD44 antigen</B>. The presence of this antigen indicates a
particular developmental stage of the neuroblastoma cells.</P>
<P class=main><B>TRK-A protooncogene.</B> Again, oncogenes turn on cell
growth.</P>
<P class=main><B>1p deletion</B>. Deletion on chromosome 1.</P>
<H2 class=main><SPAN class=red>Treatment</SPAN><A name=treatment></A></H2>
<P class=main>Clinical trial search form:</P>
<UL>
<LI class=bulleted><A class=sect
href="http://www.cancer.gov/search/clinical_trials/search_clinicaltrialsadvanced.aspx";>NCI
trials on the Cancer.gov site</A> </LI></UL>
<P class=main>Treatment will be determined by many factors, including the stage
of the disease at diagnosis and your child's age, site of the primary tumor and
metastases, and tumor histology. In general, neuroblastoma has a more favorable
prognosis if it is localized or the child is under one year old at
diagnosis.</P>
<H3 class=main>Staging</H3>
<P class=main>If a child is diagnosed with neuroblastoma, more tests are
performed to determine if the cancer has spread from where it started to other
parts of the body, or "staged". Treatment protocols depend on the stage of the
neuroblastoma. In simple terms, the stages are called "localized, regional,
disseminated, special". CCG and POG use more specific terms of the stages, and
each organization uses different nomenclatures. A good explanation of the
stages
and of their designations is linked to from the <A class=sect
href="http://www.cancer.gov/cancertopics/types/neuroblastoma/";>Cancer.gov
Neuroblastoma pages</A>.</P>
<DIV align=left>
<H3 class=main>Treatment may include:</H3></DIV>
<P class=main><B>Surgery.</B> This is common in neuroblastoma treatment and
serves to take out as much of the cancer as possible. If necessary, surgery is
delayed until chemotherapy and/or radiation has decreased tumor size.</P>
<P class=main><B>Radiation therapy.</B> Both high dose X-rays (external beam)
and radioisotopes through thin plastic tubes, (internal radiation) therapies
may
be used.</P>
<P class=main><B>Chemotherapy</B>. Common chemotherapy agents are:
daunorubicin,
cyclophosphamide, carboplatin, and epotoside.</P>
<P class=main><B>Bone marrow transplantation.</B> Autologous BMT may be used
following aggressive chemotherapy.</P>
<DIV align=left>
<H3 class=main>How to Find New Treatments</H3></DIV>
<P class=main>With the sometimes overwhelming amount of information there is on
the Internet about various forms of therapy, it can be difficult to determine
where to begin your search. Here are some tips that you might find helpful in
researching treatment options for your child.</P>
<P class=main>First of all, it would be very beneficial for you to have a good
understanding of the type of cancer with which your child has been diagnosed.
Knowing your enemy as intimately as possible always provides you with access to
more ammunition in the fight. If you are seeking out medical opinions from
physicians and researchers that specialize in neuroblastoma, it is a good idea
to have a copy of your child's medical reports and any relevant information you
might need. Keep a record of details, beginning at diagnosis, and include
information such as the following:</P>
<UL>
<LI class=bulleted>Date of diagnosis and age of your child
<LI class=bulleted>Disease stage
<LI class=bulleted>Location of primary tumour and metastases
<LI class=bulleted>Histology (ask your child's oncologist if you are unsure;
can include N-myc amplification, hyperploidy, VMA/HVA ratio, NSE, serum
ferritin, lactate, dehydrogenase, GD2, CD44 antigen, TRK-A protooncogene, 1p
deletion)
<LI class=bulleted>Treatments used to date
<LI class=bulleted>Description of how your child tolerated therapy
<LI class=bulleted>Any short or long term side effects experienced
<LI class=bulleted>How soon after completion of therapy did relapse occur
<LI class=bulleted>Options presented by your child's oncologist </LI></UL>
<P class=main>Once you have gathered together your information, you will be in
a
much better position to research possible treatment options.</P>
<P class=main>At the clinical trials sites listed above under "Treatment", you
will find lists of active clinical trials for neuroblastoma. Clinical trials
are
available in three phases (see the <A class=sect
href="http://www.acor.org/ped-onc/treatment/treatment.html#anchor582596";>ped-onc
treatment page</A> for a description of clinical trial phases). Keep in mind
that your child will have to meet certain criteria to be accepted into these
studies. This is done for the protection of your child. Phase III studies show
the most promise. However, Phase I and II studies are also worth considering,
as
they have demonstrated themselves to be potentially beneficial. If your child
has recently relapsed, consider enrolling him/her into a Phase III study. If
this does not provide a remission or at least stable disease, you may wish to
consider a Phase II or Phase I study. The decision, at this point, is largely a
personal one. Only you, together with the expert opinion of your child's
oncologist, can make that determination.</P>
<P class=main>Another avenue available is to contact an oncologist that
specializes in neuroblastoma treatment and research. Again, it would be to your
advantage to have as much medical information on your child as possible handy
when making contact with one of these physicians. Provide them with a synopsis
of your child's medical history, and ask them if they have any current
treatments and/or suggestions as to what your next step should be. It might be
a
good idea to give them contact information for your child's present oncologist.
Ask them if they would call your child's doctor to discuss his/her case.</P>
<P class=main>Finally, it would be to your advantage if you are able to connect
with other parents fighting the same battle. Experience has shown me that most
parents are very knowledgeable about their child's cancer, and are very willing
to help others in the same situation. Other parents can prove to be one of your
greatest resources.</P>
<P class=main>If a disease is not responding to therapy or recurs, what next?
How can you find new treatments? Honna wrote an <A class=sect
href="http://www.acor.org/ped-onc/diseases/newtreat.html";>Essay</A> on
emotional
aspects of this situation.</P>
<DIV align=left>
<H3 class=main>Newer Treatments for Neuroblastoma</H3></DIV>
<P class=main>(This section last updated 2003)</P>
<P class=main>Chemotherapy, surgery, radiation, and autologous bone marrow
transplantation has been the mainstay of treatment for neuroblastoma. Promising
new approaches used in various clinical trials across the continent include:</P>
<UL>
<LI class=bulleted>Immunotherapy using monoclonal antibodies.
<LI class=bulleted>Therapeutic dosing of I-131 mIBG, sometimes in combination
with chemotherapy.
<LI class=bulleted>Vaccines that attempt to initiate the immune system
against
the disease, including a natural substance called IL-2.
<LI class=bulleted>New combinations of anti-cancer drugs, such as
BSO/melphalan.
<LI class=bulleted>A derivative of vitamin A, called fenretinide.
<LI class=bulleted>Tandem (or "back-to-back") transplantation. </LI></UL>
<P class=main>One of the major breakthroughs in neuroblastoma research came
from
a 5 year, CCG randomized study (CCG-3891). The study determined that the use of
a vitamin A derivative, called 13-<I>cis</I>-retinoic acid (also called
13-<I>cis</I>-RA, or accutane), improved the event free survival for children
with neuroblastoma, especially those that had been given autologous bone marrow
transplantation. Subsequently, most centers treating children for this disease
now include 13-<I>cis</I>-RA as part of the treatment protocol.</P>
<H2 class=main><SPAN class=red>Statistics</SPAN><A name=stats></A></H2>
<UL>
<LI class=bulleted>5%-7% of all childhood malignancies
<LI class=bulleted>about 1 in 6000 children will be diagnosed with
neuroblastoma by the age of five
<LI class=bulleted>1 in 100,000 per year in US
<LI class=bulleted>The average age at diagnosis is two
<LI class=bulleted>About 25% of newly diagnosed neuroblastomas are found in
children under the age of one
<LI class=bulletedlast>Children under the age of one have a cure rate as high
as 90% </LI></UL>
<H2 class=main><SPAN class=red>Neuroblastoma Frequently Asked Questions
(FAQs)</SPAN></H2>
<P class=main>In the late 1990s, one mom wrote a FAQs section for this ped-onc
site. Many of these are still pertinent: follow the link below.</P>
<UL>
<LI class=bulletedlast><A class=sect
href="http://www.acor.org/ped-onc/diseases/nbFAQ.html";>neuroblastoma FAQs</A>
</LI></UL>
<H2 class=main><B><SPAN class=red>Ped-Onc Resources for Neuroblastoma</SPAN><A
name=resources></A></B></H2>
<P class=main>The following ped-onc resource lists have appropriate sections
for
parents of children with neuroblastoma:</P>
<UL>
<LI class=mainarea><A class=sect
href="http://www.acor.org/ped-onc/cfissues/maillist.html";>childhood cancer
e-mail lists</A> - the ACOR neuroblastoma list (<A class=sect
href="http://www.acor.org/ped-onc/cfissues/maillist.html#nblists";>N-blastoma</A>)
and the general childhood cancer list, ped-onc, are both appropriate
<LI class=mainarea><A class=sect
href="http://www.acor.org/ped-onc/resources/supportorg.html";>support
organizations</A>
<LI class=mainarea><A class=sect
href="http://www.acor.org/ped-onc/cfissues/books.html";>books and printed
materials</A> - especially the book Childhood Cancer, A Parents's Guide to <A
class=sect
href="http://www.acor.org/ped-onc/cfissues/books.html#solidtumors";>Solid
Tumor
Cancers</A>, by Honna Janes-Hodder and Nancy Keene.
<LI class=mainarealast><A class=sect
href="http://www.acor.org/ped-onc/hp/neuropages.html";>young people with
neuroblastoma</A> - personal home pages </LI></UL></DIV>
<DIV id=main>
<H2 class=main><SPAN class=red>Links to More Information<A
name=links></A></SPAN></H2>
<P class=main>The following web sites provide good, general information on
neuroblastoma.</P>
<UL>
<LI class=mainarea><A class=sect
href="http://www.candlelighters.org/journals.stm";>Treating High-Risk
Neuroblastoma at the Turn of the Century</A> by C. Patrick Reynolds, MD PhD
and Beth Hasenauer, RN MS. Spring 2001 Candlelighters Newsletter.
<LI class=mainarea><A class=sect
href="http://www.cancerindex.org/ccw/guide2n.htm";>The Children's Cancer
Web</A> neuroblastoma section info plus listings
<LI class=mainarea><A class=sect
href="http://www.neuroblastomacancer.org/scripts/content.cgi?template=default&args=main,education";>The
Neuroblastoma Children's Society</A>
<LI class=mainarea><A class=sect
href="http://www.stjude.org/disease-summaries/0,2557,449_2167_2978,00.html";>St.
Jude's</A> - section on neuroblastoma
<LI class=mainarea><A class=sect
href="http://allserv.rug.ac.be/~fspelema/neubla/nb.htm";
target=_top>University
Hospital Gent</A> Belgium
<LI class=mainarealast>Some basic information and <A class=sect
href="http://www.sbu.ac.uk/~dirt/museum/p4-325.html"; target=_top>X-ray</A>
pictures at an X-ray museum. </LI></UL></DIV>
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