FAQ - medulloblastoma
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What are the affects of Medulloblastoma radiation/chemo treatment?

Hey everyone, I need someone who's had been treated from brain cancer, Medulloblastoma, with the Chemotherapy and radiation. What are the side affects?? my brother is 8 almost 9, and we discovered that he had brain cancer about a week ago, it's hard, but it's harder on my parents of course, I want anyone to tell me the possible side affects he might get. The doctor already told us, but it doesn't hurt to hear what other people has to say. Please help me :(

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has anyone survived a second round of chemo for medulloblastoma?

does anyone know anything if they personally know someone that has survived a second round of chemo for medulloblastoma brain tumors my fiance was diagnosed almost 2 years ago and he thinks that it might be coming back he has no hope any more so if i can find someone out there that lived a Second round that would really help me out alot and him to please no answers unless you can answer my question

You would get a better response by joining online support groups where you will find many patients and caregivers willing to share their stories, advice, resources, and information.

ACOR: Medullo-PNET Support listserv group


National Brain Tumor Society
http://www.braintumor.org/GeneralMenu/  (+ info)

What are some alternative cures and treatments for medulloblastoma tumors besides chemotherapy and radiation?

My sister has a medulloblastoma tumor and her doctors at Childrens Hospital of Michigan told us that there was nothing else that they could do, so we are searching for other options.

From the looks of things, the only sort of answer that will be given a thumbs-up here is going to be along the lines of... "The doctor has spoken, and there's nothing you can do about it."

Right, but... isn't that a little bit morbid?

For those of you rating all of these answers as bad, think of what you would do in this situation. Would you just give up? Remember... the doctors are offering no other alternatives. No one's telling anyone to come off their chemotheray here, or stop taking their radiation. We're talking about someone who's been given no other options whatsoever.

This is my honest opinion, which I would tell any member of my family, my close friends, and which I would act upon myself:

If you have no other options... what's the harm in alternative medicine? It's certainly not going to HURT anything, and it might just help prolong life or ease discomfort.

Can cancer be cured by alternative medicine when it's at an advanced stage? I don't know. But I've found research stating that superfoods like chlorella and spirulina can cause tumors to shrink. It wasn't an animal study, either... it was for HUMANS.

"In 1990, a study on chlorella was performed at the Medical College of Virginia. Fifteen glioblastoma patients were administered 20 grams of powdered chlorella and 150 ml of liquid chlorella, in some cases combined with standard chemotherapy and/or radiation therapy. There was a significant increase in health and immune status immediately, and a striking 40 percent two-year survival rate was reflected in follow-up studies. This is extremely rare for this type of tumor, which normally might yield a 10 percent survival rate after two years."

From "Healing with Whole Foods" by Paul Pitchford

Chlorella is certainly not very expensive; far less expensive than a doctor's visit. I take a tablespoon of superfood blend with chlorella and spirulina every day as a preventative. It cost me about $30/month. The nice thing about it is, it's FOOD, so you can't overdo it. And even if it doesn't help with the cancer, it's going to give you a lot of nutrients found in leafy green vegetables that most people are lacking in their diets.

I guess it just bothers me to see all of these answers innundated with thumbs-downs, but no one's taking the time to post anything better.

I hope this at least helps. There's no harm in trying...  (+ info)

my 10 year old son has been diagnosed with medulloblastoma. He is currently in his 5th round of chemo.?

in the last 4 weeks he has had a noticable decline in his balance, ringing in his ears, and headaches. My fear is recurrence or spread of the cancer. His oncologists is refusing an mri until his next scheduled mri in his protocol which is 9 weeks away. My sons tumor was completely resected. What can i do to get this mri done?

There's a reason why he wouldn't do an MRI. Chemo is very toxic to the kidneys, causing it to be unable to handle added load of contrast dyes. Giving him the contrast dyes for MRI with his kidneys in this condition would most likely cause nephrogenic systemic fibrosis.  (+ info)

Which brain tumor is more common in children, Medulloblastoma or a brain stem glioma?

Thanks for answering. :)

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What are the signs that a brain tumor patient is terminal?

My daughter was diagnosed with Medulloblastoma in June this year. Due to the negative prognosis, we didn't go for surgery, chemotherapy & radiotherapy. Instead we relied on traditional Chinese medications that have been used to treat brain tumor patients in China. Its already 4 months now since her diagnose and there are both positive & negative symptoms.

Go back to your medical doctor. He is probably the best person to help you to manage symptoms.  (+ info)

My brother has medulloblastoma in his brain.he is 31 years old.do you think there is any way for being cure?

The word cure is what medical people use because their basic philosophy is to kill the germ or cut out the culprit to fix a problem in response to a symptom. This is Pasteural philosophy. In extreme cases, it's a good way to go. In regard to cancer, we know that chemotherapy and radiation survival rate is about 2% to 3% using the 5 year survival statistic.

We also know that 99% of ALL cancer is due to infections. Finding those infections is what becomes difficult. We know that doing autopsies on cancer victims that their bodies contain between 40 and 200 biofilm sites that harbor and protect the infections from being attacked by macrophages the body musters up to kill the infections and that the body's immune system cannot destroy these insidious problems.

If you can find the infections that are raging and get rid of it or them, the body will then have a fighting chance to become healthy and it's innate intelligence will win out.

Tumors and cancer do not just happen out of the blue. There is a reason or "root cause" that makes this happen. A huge number of brain tumors and cancers come from raging infections in the teeth. Especially root canals, extractions, and amalgam fillings. It is critical to have your brother's teeth examined by someone who can find these infections. We find that ALL root canals done by typical dentists have raging infections called cavitations or "NICO" (neurlogia-induced cavitations osteonecrosis) or progressive degeneration of the jaw bone due to infections. Dentists rely on gutta percha, for example, to put bacteria in check and to fill the canals of roots they drill out. However, reality is that this latex type material does not kill all the bacteria and it does not fill all the canals. So they use a solution of hypochorite or hydrogen peroxide to sanitize the root, but this only kills about 30% of the germs at best, leaving lots of germs. Since the body does not provide good blood flow to the roots and jaw bone, the immune system CANNOT rid itself of these infections. Since the infection causes destruction of capillaries going to the bone area, the lack of more blood flow exacerbates the problem and more infection results. These infections can and do many times reflex to other parts of the body, especially to brain tissue causing tumors, cancer, etc.

Since there is no pain involved in this condition, and dentists are not trained to see cavitations on dental x-rays, the condition is allowed to exist and continue. As the body is affected by these infections, the minerals are used up very rapidly and until the infections are cleared, the cancers and tumors will most likely reappear. These infections sites also generate lots of biofilms and allow the body to be attacked in many places where the biofilms travel too.

It's imperative that your brother up regulate his minerals to help fight this problem. A quick check of his first morning pH of his urine will tell you if infection(s) most likely are generating this problem. Get some pH paper and see what it is? The normal range in a person with no infections and good mineral content in his body is between 6.4 and 7.0. This is an excellent test to see if someone is actually cleared of cancer as well. Many people are told they are "cured" but in actuality are not. This test is the acid test. To be truly healthy, the evening pH should also be in the same range.

To truly help your brother, I would look for the infections.

good luck to you  (+ info)

Medulloblastoma brain cancer treatment?

Hi, my name is Marwa. My little 8 year old brother has got brain cancer, and as I heard the doctor say it was Medulloblastoma. So, what we're really confused about is a new study where the cancer patient enters a study, where they give him a smaller dose of radiation, to see if the side affects lessen. I really need an advice from people, especially patients (or used to be a patient) to tell me if it's a good idea to put him in the study to get a smaller dose. Or, is it better to go with the standard treatment and go with all the side affects?

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Advice for coping with hospital boredom?

I'm a 16 year old with medulloblastoma, and seem to end up in the hospital a lot. Anyone have any advice for beating the hospital blues and boredom?

The laptop is a great idea. You might consider adopting some GIs in Iraq and Afghanistan as pen pals and start corresponding with them. They love that and there are many websites that allow you to do that online, although you could certainly write letters as well. Online correspondence will allow you to get more responses quicker, which might be nice for your hospitalizations.

You might ask the ward staff ahead of time if there are things you can do for the younger kids on the ward, like reading to them, playing games, taking them outside in their wheelchairs, etc. Then you could bring in what you need to help them. Not only would that keep you from being bored, but you would feel good knowing you are helping others. That is the best medicine of all.

Good luck to you, my friend.  (+ info)

whats the best way to get my website known? www.surviving4you.com?

It is a place for siblings of kids with cancer to go and get help and talk to others who understand. I really want it to help people, I'm just having trouble finding the right way to get it out there. I am also a sibling myself, my 13 year old brother died 2007 from medulloblastoma brain tumor. Help me help the siblings!

Talk it up in online medical forums/online bulletin boards. Put it on your myspace/facebook and be sure to connect with similar organizations. Have the link in your "signature" at the bottom of your emails and in any online forums/communities you frequent. Contact the ACS and see if they will plug it for you, as well. Contact your local paper and ask if they will do a piece on it for you. Put up fliers at nearby hospitals. Ask local pediatric oncologists if they will allow you to place some literature in their waiting rooms.

Good for you for turning your tragic loss into comfort for others experiencing the same thing.

Well done.

Good luck!
~Dr. B.~  (+ info)

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