I have a question about Neuroblastoma.?
Question:
If not herbal remedies...any other tips or suggestions that I can offer this family?
thanks!!!
Answers:
In my experience of being a nurse most herbal remedies tried by most of the families on my ward have never worked. this can't be said for all people but unfortunately this type of cancer is aggressive and needs aggressive treatment.
By just being there for the family and offering support can help in a lot of ways as they can start to feel overwhelmed and isolated as they will be spending alot of time in hospital with their child.
As for the people that have said about the stage 4 prognonsis, yes i have witnessed children dying from this disease but i have also seen children cope exceedingly well with the treatment and go home and lead perfectly normal lives and only come in for twice yearly reviews still looking better than ever.
unfortunately with neuroblastoma's most children get diagnosed with stage 4 as the cancer progresses at a very fast rate and by the time they are symptomatic and diagnosed the cancer has gone into stage 4. This in no way means that have terminal cancer it just means that the treatment that they receive will be more aggressive and can make the child very sick, very quickly.
if you want any advice on how you can support this family this website can help and it will give you more information about neuroblastoma's. www.cancerbackup.org,uk
Unfortunately... stage 4 cancer essentially means they are waiting for the patient to die.
The cancer has metastasized and gone into other organs... most commonly the lymphatic system, brain and bones. Often liver, kidneys... everywhere.
Don't try to offer false hope.
Cancer is cruel enough without the scammers that try to offer false hope and steal money by selling "miracle herbs" that just don't work... EVER.
Unfortunately neuroblastomas particularly in stage 4 with metastis to the lymph and liver are always fatal, the only thing herbal remedies will be able to do is prolong the inevitable.
I'll say a prayer for you, because it is going to take a miracle for the little girl to survive. I really hope the best for their family and it is terrible that she was diagnosed with this rare adrenal tumor. I work in the NICU and I hate seeing these terrible diseases that attack babies before they even have chance.
I would say be grateful for the 4 years and the next years they have with her!
Addendum:
I just talked to a friend who specializes in infant neoplasms at John Hopkins and he was telling me that with aggresive treatments it is not always fatal, and many children have survived! Most will become very sick and the treatments will be extremely trying for them, but there is hope she'll make it. He did tell me if it spreads to the kidney it is a much deadlier. Also he agreed with me that herbal remedies are not going to help.
don't listen to other people or even doctors..
people on here could be soo rude! stage 4 means ready to die? it does NOT mean that! Miracles happen..
look at Lance Armstrong, he was already on his death bed .. he had cancer stage 4 that had already spread to his brain.. the main is alive and cured now! so don't listen to people that are not even willing to offer some sort of comforting advise!!
my brother in law has gleoblastoma multiforme cancer. aside from his normal treatment (radiation which is complete now) and chemo, my sister is giving him flaxseed, and also some other herbal remedie which is called FLOR ESSENCE which is suppose to cure things like that..
you can suggest that..
hope this helps
Just a quick note to say I survived stage 4 neuroblastoma as an infant in the mid-'70s. If I can do it then, the little one sure has a fighting chance now. Never give up hope. If my family had, I feel sure I'd be dead now.
Neuroblastoma: A leading childhood form of cancer that arises in the adrenal gland or in tissue in the nervous system that is related to the adrenal gland. Neuroblastoma is the most common solid tumor outside the brain in infants and children. It is often present at birth but usually is not detected until later in infancy or childhood.. The most common symptoms are the result of pressure by the tumor or bone pain from metastases. Protruding eyes and dark circles around the eyes are common and are caused by cancer that has spread to the area behind the eye. Neuroblastomas may compress the spinal cord, causing paralysis. Approximately 70 percent of all children with neuroblastoma have metastatic disease at diagnosis. The prognosis (outlook) is related to the age at diagnosis or do not have regional (the younger, the better the prognosis), clinical stage of the disease at diagnosis, and whether the child has lymph node involvement by the tumor. Screening infants for neuroblastoma is not warranted because it does not decrease the morbidity (illness) or mortality (death) rate.
More Information: Neuroblastoma affects newborn babies and children up through the age of 10. In the adrenal it develops in the medulla (the central part) of the gland. In the nervous system it arises in one of the ganglia of the autonomic nervous system; a neuroblastoma so arising is sometimes termed a sympathicoblastoma.
There are about 600 new cases of neuroblastoma diagnosed each year in the US. This tumor can regress (go away) on its own. Unfortunately, most children over a age of year have metastatic disease, disease that has already spread -- the spread is most commonly to the lymph nodes, liver, lungs, bones, and bone marrow -- by the time of diagnosis, so there is often a very poor outcome despite aggressive therapy.
Neuroblastoma is predominantly a tumor of early childhood; two thirds of children with neuroblastoma are diagnosed when they are younger than 5 years of age. It is often present at birth but usually is not detected until later; in rare cases, neuroblastoma can be detected before birth by fetal ultrasound.
The most common symptoms of neuroblastoma are the result of pressure by the tumor or bone pain from cancer that has spread to the bone. Protruding eyes and dark circles around the eyes are common and are caused by cancer that has spread to the area behind the eye. Neuroblastomas may compress the spinal cord, causing paralysis. Fever, anemia, and high blood pressure are found occasionally. Rarely, children may have severe watery diarrhea, uncoordinated or jerky muscle movements, or uncontrollable eye movement.
Approximately 70% of all patients with neuroblastoma have metastatic disease at diagnosis. The prognosis for patients with neuroblastoma is related to their age at diagnosis (the younger, the better the prognosis), clinical stage of their disease, and (in patients older than 1 year of age) whether they do or do not have regional lymph node involvement by the tumor.
Dr. Katherine Matthay and colleagues reported in The New England Journal of Medicine that autologous bone marrow transplantation (bone marrow from the patient) and the drug 13-cis- retinoic acid, alone or in combination, significantly improved event-free in children with high-risk neuroblastoma who normally have a dismal prognosis.
In Japan a program was initiated to screen infants for neuroblastoma by testing for substances called catecholamines (made by the tumor) in their urine. However, a large population-based North American study in which most infants in Quebec were screened at ages 3 weeks and 6 months has shown that screening detects many neuroblastomas with favorable characteristics that would never have been detected clinically, apparently because the tumors would have spontaneously regressed. The screening did not decrease the morbidity (illness) or mortality (death) rate. A large study in Germany also showed that screening at one year of age does not reduce the mortality from neuroblastoma. From both studies, which appeared in The New England Journal of Medicine, it can be concluded that screening infants for neuroblastoma is not warranted.
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