Dear Ali,
Sorry kalo g baru balas mail ini, soalnya g gak sempat buka kompu sejak
peristiwa menimpa keluarga kami...
Keponakan g, terdiagnosa positif mengidap Neuroblastoma dan skr sudah stadium
4...umurnya baru 4 th
Terima Kasih g ucapkan atas bantuan serta perhatiannya
Alang, HK
uray ali sjahran <[EMAIL PROTECTED]> wrote:
Dear Alang,
Saya ada sedikit informasi mengenai neuroblastoma dari teman yang saat ini ada
di Samarinda.Beliau ada kirim links site nya.Muda²an bermanfaat bagi anda.
Salam,
U.Ali Sj.
Hinweis: Die weitergeleitete Mail ist angehängt.
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Date: Thu, 17 May 2007 23:19:39 +0200 (CEST)
From: uray alisjahran <[EMAIL PROTECTED]>
Subject: FWD: Re: silatulrachmi
To: [EMAIL PROTECTED]
ok
Hinweis: Die weitergeleitete Mail ist angehängt.
---------------------------------
Jetzt Mails schnell in einem Vorschaufenster überfliegen. Dies und viel mehr
bietet das neue Yahoo! Mail .Date: Thu, 17 May 2007 21:37:10 +0800
From: "ariens" <[EMAIL PROTECTED]>
To: uray alisjahran <[EMAIL PROTECTED]>
Subject: Re: silatulrachmi
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
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.
>
href="Neuroblastoma_files/styles.css" type=text/css rel=stylesheet>
width=354 border=0>
Resources and information for parents of children with
cancer . . . by parents of children with cancer.
Site Links
href="http://www.acor.org/ped-onc/index.html";>Ped-Onc Home
href="http://www.acor.org/ped-onc/cfissues/cfissues.html";>Family Support
href="http://www.acor.org/ped-onc/diseases/diseases.html";>Info on Cancers
href="http://www.acor.org/ped-onc/treatment/treatment.html";>Treatment Issues
href="http://www.acor.org/ped-onc/survivors/index.html";>Survivorship Issues
href="http://www.acor.org/ped-onc/timetogo/timetogo.html";>Grief ("Time To
Go")
href="http://www.acor.org/ped-onc/activism/action.html";>Get Involved
href="http://www.acor.org/ped-onc/WebInfo/choicelinks.html";>Links to Helpful
Sites
href="http://www.acor.org/ped-onc/WebInfo/journalsearch.html";>Journal
Searches
Reference
href="http://www.acor.org/ped-onc/glossaries.html";>Glossaries
href="http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?DB=pubmed";>PubMed
href="http://www.acor.org/ped-onc/resources/index.html";>Lists of Resources
href="http://www.acor.org/ped-onc/stats.html";>Childhood Cancer Stats
About this site
href="http://www.acor.org/ped-onc/siteindex.html";>Site Index
href="http://www.acor.org/ped-onc/editor.html";>Contact
Section Links
href="http://www.acor.org/ped-onc/diseases/leuk.html";>leukemias
href="http://www.acor.org/ped-onc/diseases/neuro.html";>neuroblastoma
href="http://www.acor.org/ped-onc/diseases/brain.html";>brain cancers
href="http://www.acor.org/ped-onc/diseases/lymph.html";>lymphomas
href="http://www.acor.org/ped-onc/diseases/wilms.html";>Wilms tumor
href="http://www.acor.org/ped-onc/diseases/bone.html";>bone cancers
href="http://www.acor.org/ped-onc/diseases/retino.html";>retinoblastoma
href="http://www.acor.org/ped-onc/diseases/rhabdo.html";>rhabdomyosarcoma
href="http://www.acor.org/ped-onc/diseases/germcell.html";>germ cell tumors
href="http://www.acor.org/ped-onc/hp/otherpages.html";>other types
href="http://www.acor.org/ped-onc/diseases/SOCC.html";>signs of childhood
cancer
href="http://www.acor.org/ped-onc/diseases/causes.html";>causes of childhood
cancer
href="http://www.cancer.gov/cancertopics/treatment/childhoodcancers";>cancer.gov
childhood cancer link
href="http://www.acor.org/ped-onc/diseases/neuro.html#misc";>
on this page
href="http://www.acor.org/ped-onc/diseases/SOCC.html#neuroblastoma";>symptoms
of neuroblastoma
href="http://www.acor.org/ped-onc/diseases/neuro.html#diagnosis";>diagnosis
href="http://www.acor.org/ped-onc/diseases/neuro.html#screening";>screening
for
neuroblastoma
href="http://www.acor.org/ped-onc/diseases/neuro.html#histology";>histology
and
cytogenetics
href="http://www.acor.org/ped-onc/diseases/neuro.html#treatment";>treatment
href="http://www.acor.org/ped-onc/diseases/neuro.html#stats";>statistics
href="http://www.acor.org/ped-onc/diseases/nbFAQ.html";>neuroblastoma faqs
href="http://www.acor.org/ped-onc/diseases/neuro.html#resources";>ped-onc
resources
href="http://www.acor.org/ped-onc/diseases/neuro.html#links";>links to more
info
Neuroblastoma
Recommended:
href="http://www.cancer.gov/cancertopics/pdq/treatment/neuroblastoma/healthprofessional";>NCI
PDQ for Neuroblastoma
On this site:
href="http://www.acor.org/ped-onc/diseases/SOCC.html#neuroblastoma";>Warning
Signs of Childhood Cancer: Neuroblastoma
Neuroblastoma 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
href="http://faculty.washington.edu/chudler/neurok.html";>Neuroscience for
Kids 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 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.
Diagnosis
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).
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.
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).
Screening for Neuroblastomaname=screening>
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?
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."
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.
Further reading on screening for neuroblastoma:
href="http://www.meb.uni-bonn.de/cancernet/306393.html";>MedNews from NCI
Histology and Cytogeneticsname=histology>
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:
N-myc amplification. 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.
Hyperploidy. A normal cell has 46 chromosomes. Cancer cells
often have extra chromosomes, and this is termed "hyperploidy".
VMA/HVA ratio. This is the ratio of catecholamine
metabolites found in the urine.
NSE. Neuron-specific enolase, a serum marker. This is an
enzyme specific to the sympathetic nervous cells from which the neuroblastoma
derives.
Serum ferritin. An accurate estimate of the body's iron
stores; a serum marker.
LDH. Lactate dehydrogenase (LDH) is a group of enzymes that
have a similar biological activity; a serum marker.
Gd2. Presence of this serum marker (a sialic
acid-containing glycosphingolipid) may play a role in faster tumour
progression.
CD44 antigen. The presence of this antigen indicates a
particular developmental stage of the neuroblastoma cells.
TRK-A protooncogene. Again, oncogenes turn on cell
growth.
1p deletion. Deletion on chromosome 1.
Treatment
Clinical trial search form:
href="http://www.cancer.gov/search/clinical_trials/search_clinicaltrialsadvanced.aspx";>NCI
trials on the Cancer.gov site
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.
Staging
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
href="http://www.cancer.gov/cancertopics/types/neuroblastoma/";>Cancer.gov
Neuroblastoma pages.
Treatment may include:
Surgery. 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.
Radiation therapy. Both high dose X-rays (external beam)
and radioisotopes through thin plastic tubes, (internal radiation) therapies
may
be used.
Chemotherapy. Common chemotherapy agents are: daunorubicin,
cyclophosphamide, carboplatin, and epotoside.
Bone marrow transplantation. Autologous BMT may be used
following aggressive chemotherapy.
How to Find New Treatments
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.
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:
Date of diagnosis and age of your child
Disease stage
Location of primary tumour and metastases
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)
Treatments used to date
Description of how your child tolerated therapy
Any short or long term side effects experienced
How soon after completion of therapy did relapse occur
Options presented by your child's oncologist
Once you have gathered together your information, you will be in a
much better position to research possible treatment options.
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
href="http://www.acor.org/ped-onc/treatment/treatment.html#anchor582596";>ped-onc
treatment page 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.
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.
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.
If a disease is not responding to therapy or recurs, what next?
How can you find new treatments? Honna wrote an
href="http://www.acor.org/ped-onc/diseases/newtreat.html";>Essay on emotional
aspects of this situation.
Newer Treatments for Neuroblastoma
(This section last updated 2003)
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:
Immunotherapy using monoclonal antibodies.
Therapeutic dosing of I-131 mIBG, sometimes in combination
with chemotherapy.
Vaccines that attempt to initiate the immune system against
the disease, including a natural substance called IL-2.
New combinations of anti-cancer drugs, such as
BSO/melphalan.
A derivative of vitamin A, called fenretinide.
Tandem (or "back-to-back") transplantation.
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-cis-retinoic acid (also called
13-cis-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-cis-RA as part of the treatment protocol.
Statistics
5%-7% of all childhood malignancies
about 1 in 6000 children will be diagnosed with
neuroblastoma by the age of five
=== message truncated ===
with my best regard..
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