Cancer Survivors Network

no, but do not give up. i cannot urge you enough that you must go to a teaching hospital where they will have the latest treatments.

sorry to hear that about your son ....my 6 yr. old grand daughter has it.... have yall had any good results from treatments....we are looking for optioin

I am sorry to hear about all of these cases, wanted to share my story. As it commonly being said that brain steam glioma is a children's cancer. However my father at age 49 was diagnosed with this type of cancer, and since than every doctor that had seen him always tels u how rare it is. It have been 1 year 8 month since he was diagnosed, after he suffered a stroke. He was treated in Mass General (only radiation) and for now the tumor is stable.
I wish best of luck to all of you. Don';t give up.

On 11/03/09 my 26 year old husband was diagnosed with a grade 4 GBM tumor that is growing into his brain stem. A week later they operated and were only able to remove less then half of the tumor (which was the size of a golf ball) because it was a higher risk surgery due to its location in the brain. After the surgery my husband was experiencing fatigue, some loss in his vision, hearing and short term memory. He had his surgery done in Toledo, OH but is now receiving his treatments from the Cleveland Clinic. He is currently taking Keppra, Pepcid, and Dexamethasone while under going radiation and chemo (Temodar).

The BEST thing that I have found in regards to my husbands well being was changing is diet. As I'm sure you know from doing your own research, we all have cancer cells within us but what makes a difference is whether our bodies are able to seek and 'destory' the cancer cells effectively. And the best way to do this is by changing their diets in order to build up a healthy immune system. What this means is no more meats and very little dairy products. Make sure that they are eating high amounts of vegetables, fruits, nuts, leafy greens, and whole wheat grains.
We recently bought a juicer which has made such a difference in my husbands energy levels and alertness. We juice carrots, apples, celery, and wheat grass every morning. He drinks 500 ml.

Please read and do research on this subject. I don't want to write too much but like I said, it has made all the difference in my husbands health. The oncologist are now so surprised at how well he is doing.
Best of luck to you!
Ali

Hi Debbiel,

I hope you have found help with your treatment by now; I am very optomistic that my proton therapy is doing a good job of treating my tumor. I recently completed 29 treatments of proton therapy in Oklahoma City. The facility opened last August. I have a low grade, brain stem glioma and the primary symptom is double vision. I am 63 years of age and just began my second year of retirement from the Federal Government. My first MRI after treatment of 2 1/2 weeks showed a 20% reduction in the tumor size. I have another MRI next week. If you need further help or encouragement, I can give you more information based on my experience. Just let me know where you are in your treatment process. God bless you.

Hello Debbie can you tell me a little bit about they type of brain cancer your son has?

Hello Debbie, My name is Melonie and yes I have been through what you are going through so I can relate. I will not say that I have all the answers but will try to provide hope or will help you find it.

I was diagnosed when I was 7 in 1977. It was in operable as it was on my brainstem. I had radiation treatments in late 70's, chemo in early 80's. A couple of years after stopping chemo. I was told the tumor no longer showed up on the CT scan. Later MRIs continued to be clear.

I was told later I had been given 6 months to live and within a month or two it was 6 weeks... Although mine has been a hard life I'd say, it's been a very happy one!

I was diagnosised with an malignant astrocytoma, now the Cleveland Clinic doctor I've just seen is guessing it was actually a medullablastoma.

My daughter has suffered with this tumour and survived initially she was given 8 months prognosis 11 years ago just before her 4 birthday as you can imagine we were devastated. She had conventional 6 weeks of radiotherapy here in England, Following the radiotherpy the doctors had no hope - the following year proved to be vey difficult. about 6 months after diagnosis we started her on B17 laetrile for 3-4 month which I had researched on the internet. we saw a distinct improvement on this but due to her sickness we changed to Cansema Tonic III and braiin tumour tonic from the same company which had a amazing effect on her health. We stopped the treatment reluctantly 18 months on from diagnosis. The doctors believe she is a miracle - I and my wife believe the herbal remedies have saved her life. She is now 15 years old and is enjoying life - she has her disabilities caused from the radiotherapy - but functions at a high level.

Hello,

have a 22 year old brother who has been diagnosed with on March 7th,
2011 with a glioma tumor. Up until that point in time, he has been a
healthy boy; he is currently a student studying Electrical Engineering
(3rd year University). On March 7th, after many nights with very
little sleep because of his exams, he played squash. Suddenly, just
after the game, he experienced a general seizure. He passed out but
when he regained conscientiousness, he could still remember everything. He
explained that his arm started quivering uncontrollably prior to him
passing out.

At the hospital emergency room, the on-call doctor told my brother
that he has a abnormality in his brain and introduce my brother to a
neurosurgeon at Toronto Western Hospital. We had the appointment next
day. The neurosurgeon asked my brother to have a MRI. Two weeks later,
we did the MRI, and brought the result to the neurosurgeon.
Neurosurgeon offered 2 options to my brother: 1. wait and see 2.
surgery. After doing some investigation, my brother chose to do the
surgery especially since he had lots of pain and waves going through
his right arm.

The diagnosis is that he has a glioma tumor, grade II, in the left partial lobe
of his brain which controls the movement of the right side of the
body.

He had his MRI done after 3 months from the day he had his surgery.
His neurosurgeon would like my brother to undergo radio therapy
starting immediately. However, his radio oncology would like to wait another 2 months to make sure what they have seen in the latest MRI is a scar not an activity. I heard that Chemo is better than Radio therapy. With radio therapy no future operations are
possible.
Can someone please advise if they have heard that it would be better to do chemo than radiation?

Thanks,