Brainstem Glioma

pbb

jerica2010 said:

brother with brain stem glioma
Hello. My brother was just diagnosed with brain stem glioma and he is only 17. We've both done our research and he doesn't have high hopes but i still do. It would be great to here some survival stories, it would give me more hope. We are going to CHOP (Childrens Hospital of Philadelphia), they told us it is inoperable they are giving him radiation but that is only supposed to shrink the tumor. I want answers but no one will give me any. This is a terrible diagnosis and i feel for anyone who has had to go through this. If anyone has any advice or help please let me know. I can only hope for good news from now on !

brain stem glioma
hello...........i was moved by your posting. My 13 year old daughter was diagnosed with a brain stem tumor and was thought to be inoperable. Before we started with radiation treatment, we were able to get a second opinion from johns hopkins where they said it was operable. Six months ago surgery was done and 80% of the tumor was removed. It was confirmed to be benign and classified as a juvenile pilocystic astrocytoma. Treatments are quarterly MRI's for now. Recovery has been a real challenge for us however. She had to relearn to walk,speak,write, and so forth. She is progressing but it is a very challenging experience. We are lucky that it is not cancerous. So, second opinions are encouraged and at johns hopkins our fears were turned into hopes and promise.

Toshy

brain tumor on brain stem 30 years ago
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.

frankbury

Diffuse brain stem glioma.
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.

rburroughs

frankbury said:

Diffuse brain stem glioma.
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.

Brainstem Glioma
Just wanted to share a little information I wish I would have know back in 1975. Has anyone tried Antineoplaston? What has been the outcome of those treatments? I saw a post from pab11, where they were going to a Burzynski Center, but there was no follow up. God bless and there are cures out there.
-Raymond B.

Valgras

frankbury said:

Diffuse brain stem glioma.
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.

Diffuse brain stem glioma
My son was diagnosed with a brain Stem glioma at age 18 months. He is now six, and appears stable. He had radiation last year which did reduce the tumor size, but it is still there. The doctors told me it may be a pilocytic astrocytoma. What type of tumor does your daughter have?

Eng

Hello
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,

Jake.Alive

Eng said:

Hello
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,

BURZYNSKI CLINIC for Brainstem Glioma
I have posted elsewhere about this today doing research on treatments. I just finsihed watching the video about the Burzynski Clinic in texas and the remarkable results they were getting treating all types of cancer and they appear to specialize with Brain tumors and they cite cases of Diffuse Brain stem Glioma in children.

They use his therapy with Antineoplastins. A way to introduce metabolites that switch off the oncogenes and Switch on the Cancer killing mechanism. The % outcpomes are very good with no damage as Chemo agents and Radiotherapy are not required though in some cases to gte approval people were forced to undergo radiation first for some reason to prove there was no further treatemtn possible. Some FDA requiremetn befoire they would let people
get the therapy.

You could download the Video for free from their website for a certain period and I think you can stream it live or geta DVD. Which ever way, it was an inspirational watch. Just search 'burzynski'.

Can anyone here report back with experience from the clinic ??

I would be very grateful.

J.

ogniesperanza

okgeologist said:

Brain Stem Glioma
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.

Proton treatment
Hello, okgeo. How are you feeling now? I am 58 and was recently diagnosed with a brain stem tumor and am looking for treatment. Every Hope in France.

snookiesbaby

My niece was diagnosed 7 days

My niece was diagnosed 7 days ago. She was referred to NIH Dr warren she is 19 years old and was also told that this is usually seen in younger children. She is having her first radiation treatment today and will be getting them 5 days a week for six weeks. God bless you and your family

 

pattin

Toshy said:

brain tumor on brain stem 30 years ago
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.

Brain Stem Tumor 35 years ag

Our daughter, who is now 36 was diagnosed at age 16 months with a brain stem glioma - it was an astrocytoma. The gave her 3 months to live, basically told us how she was going to die, but wanted to try radiation and chemo. We had the most amazing Oncologist at the Cleveland Clinic - Dr. Doering at the time.

Well, after both treatments, our daughter lived. At the time, they thought she would be fine, but the years and the radiation have taken so much from her. We agree - hard life, and still is. In a wheelchair, dealing with pain all the time and mentally disabled. Just found a late effects survivors clinic in Cleveland and will be going soon to get another opinion on everything!

bddixon83

Low-Grade Glioma on Brainstem

I thought I'd add my bit to this thread... SO here she goes...

 

I am a 29 year old, single mother, RN from Alabama & was "officially" diagnosed with a Low-grade Glioma on my brainstem on February 27, 2013.

However we have gone back and found evidence that the tumor was there in 2007, however much smaller... Anywho.

My tumor is inoperable, due to its size and location on my brainstem... i believe it is throughout my medulla, pons, and trying really dang hard to spread on down to to my Cervical spine.

I resigned from the hopsital I was working at as a floor nurse and now My full-time job is doing whatever I've gotta do to stay up & do whatever work & service I have left to to here.

Now... I say this & I don't feel sad or upset... not even disappointed, but I do not suffer myself by living based on what my "Prognosis" is... I've seen first hand in the hospital & in my life that you can't live your life based on statistics...

Life is life. there is no rationalizing or explaining why cancer, tumor, illness, death... happens and hits us... but it does... and it will continue to for every person on this earth...

 As for me, I choose to enjoy my life... Love my son... Hold strong to my Faith... and do whatever is within my power to get myself healthy... mentally, physically, & spiritually.

I know that even as I am currently undergoing my radiation therapy & my chemo pill aka Temodar... that there's a chance that it'll come back, or won't go bc it's far to comfortable where it lies...

I'm really not trying to be all "preachy" so pardon me if that's how i'm coming off...

but as a Nurse & researching treatments and tumors... I've learned that the brain is a tricky tricky thing... brain tumor can or can't be cancerous. it can or can't be operable. Not all radiation therapy or chemotherapy works the same... and in order to know the MOST Effective treatment to kick that tumor's butt, would require a biopsy to know exactly what type of cells they're dealing with. Depending on the location, the grade aka aggressiveness of the tumor can enchance or limit your treatment options. It would be awesome if there was a simple one-size fits all cure/fix, but alas... there is not.

WHat is the point of my post... I can't rightly say... but I feel prompted to encourage you to research, but not to the point where it makes you crazy... Use only RELIABLE Resources. 

Don't Live based on Your PROGNOSIS. I know mine, mine is simple straight & clear... *insert alabama twang here* "If this don't work... ain't nothing gonna work."

And even as I type that... I am filled with gratitude for all that I have been able to do in my life so far & whatever time I have left to here. My life may not extend out 50 + years as I had assumed, but heck, I would gladly and gratefully take any amount of time that is before me... Year, Years, a Decade? Fosho! If not, okay.

every person is different... all treatments and there effectiveness can and may be different, there is not way to know, and it's only natural to Need those answers... but there are times in life when all you can do is rely on your faith or find your faith.

 

It is my sincere hope & prayer that each person that comes across this will be blessed with a peace & comfort in there hearts & minds... There is nothing fair about why or how these things happen... but they do & I truly hope for the best for each of you & your loved ones who are enduring, or who have endured this fight.

if you'd like to follow my treatments & what's going on in my life as I get on through them, I've created a Tumblr page for my family & friends to follow... and I'm open to sharing it to anyone who may benefit from my experiences.

http://iwillnotshrink.tumblr.com/

 

Kerri77

frankbury said:

Diffuse brain stem glioma.
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.

Hi I'm in England and my

Hi I'm in England and my husband recently diagnosed ,, would love to hear more from you x

Mel_22

Hello

Hello, I'm not sure if anyone will even read this since the last post was in 2013, but I'll try anyways. I was diagnosed with brainstem giloma at a very young age, if I remember right I was 4. Lots of doctors worried about me, I remember  when I was 7 I got to go on a   make-a-wish trip because of my doctors. Now  that I actually know what Make-a-wish is about I believe my doctors didn't see me making it this long. Long story short I ended up having to I to Duke for some tests and them my parents and I went to NYC to meet with doctors about the results. My tumor is benign, yet I have regular MRIs just to see if there's a change and what not. I'm happy to say at 19 going on 20 there hasn't been any complications (knock on wood). I just wondered if anyone knew of any cases where a benign tumor has changed to malignant. 

Thanks!

jybao

okgeologist said:

Brain Stem Glioma
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.

Proton Therapy

Dear Okgeologist,

 

Good to read your post even though it was 4 years ago.

I'm 34 years old. I was diagnosed with low grade brainstem glioma 3 months ago. So upset as my baby is only 19 months. I really want to live longer to be with her. So may I ask for your experience?

My glioma is diffusive. Some doctors said it's not suitable for Proton Therapy. How about yours? How did you find Proton Therapy in general? Any side effect?

 

Thanks so much in advance and hope can stay in touch with you!

Elaine

 

Kurob421

okgeologist said:

Brain Stem Glioma
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 okgeologist

hi Ok geologist,

 

ii am hoping this note finds you well. May I ask how you are doing.  My wife was diagnosed in July with the same thing and also has double vision as her symptom.

 

Best,

Rob

CamCan

okgeologist said:

Brain Stem Glioma
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.

Proton Therapy

Hi, I've just read your post from some time ago and am wondering how the Proton treatment worked?  My husband has been diagonised with a low grade brain stem glioma and for now they have suggested doing nothing and having another MRI in 3 months to see if there is any change. I would love to hear how proton worked for you?  Kind regards, Lisa 

ajaysingh

brain stem glioma

Hi 

my sister is suffering from brain stem glioma of 3 cm , she is right now goig through radiation and more over now she is feelong too much nausea and denying any thing to eat and drink , please consult any recommendation.

 

Regards 

ajay 

abuscaglia

Adult Brain Stem Glioma

Hi, I just started my journey,  I was diagnosed with a Brain Stem Glioma C71.9.  Unable to operate or Biopsy.  Being treated with Chemotherapy and Radiation starting today.

abuscaglia

bddixon83 said:

Low-Grade Glioma on Brainstem

I thought I'd add my bit to this thread... SO here she goes...

 

I am a 29 year old, single mother, RN from Alabama & was "officially" diagnosed with a Low-grade Glioma on my brainstem on February 27, 2013.

However we have gone back and found evidence that the tumor was there in 2007, however much smaller... Anywho.

My tumor is inoperable, due to its size and location on my brainstem... i believe it is throughout my medulla, pons, and trying really dang hard to spread on down to to my Cervical spine.

I resigned from the hopsital I was working at as a floor nurse and now My full-time job is doing whatever I've gotta do to stay up & do whatever work & service I have left to to here.

Now... I say this & I don't feel sad or upset... not even disappointed, but I do not suffer myself by living based on what my "Prognosis" is... I've seen first hand in the hospital & in my life that you can't live your life based on statistics...

Life is life. there is no rationalizing or explaining why cancer, tumor, illness, death... happens and hits us... but it does... and it will continue to for every person on this earth...

 As for me, I choose to enjoy my life... Love my son... Hold strong to my Faith... and do whatever is within my power to get myself healthy... mentally, physically, & spiritually.

I know that even as I am currently undergoing my radiation therapy & my chemo pill aka Temodar... that there's a chance that it'll come back, or won't go bc it's far to comfortable where it lies...

I'm really not trying to be all "preachy" so pardon me if that's how i'm coming off...

but as a Nurse & researching treatments and tumors... I've learned that the brain is a tricky tricky thing... brain tumor can or can't be cancerous. it can or can't be operable. Not all radiation therapy or chemotherapy works the same... and in order to know the MOST Effective treatment to kick that tumor's butt, would require a biopsy to know exactly what type of cells they're dealing with. Depending on the location, the grade aka aggressiveness of the tumor can enchance or limit your treatment options. It would be awesome if there was a simple one-size fits all cure/fix, but alas... there is not.

WHat is the point of my post... I can't rightly say... but I feel prompted to encourage you to research, but not to the point where it makes you crazy... Use only RELIABLE Resources. 

Don't Live based on Your PROGNOSIS. I know mine, mine is simple straight & clear... *insert alabama twang here* "If this don't work... ain't nothing gonna work."

And even as I type that... I am filled with gratitude for all that I have been able to do in my life so far & whatever time I have left to here. My life may not extend out 50 + years as I had assumed, but heck, I would gladly and gratefully take any amount of time that is before me... Year, Years, a Decade? Fosho! If not, okay.

every person is different... all treatments and there effectiveness can and may be different, there is not way to know, and it's only natural to Need those answers... but there are times in life when all you can do is rely on your faith or find your faith.

 

It is my sincere hope & prayer that each person that comes across this will be blessed with a peace & comfort in there hearts & minds... There is nothing fair about why or how these things happen... but they do & I truly hope for the best for each of you & your loved ones who are enduring, or who have endured this fight.

if you'd like to follow my treatments & what's going on in my life as I get on through them, I've created a Tumblr page for my family & friends to follow... and I'm open to sharing it to anyone who may benefit from my experiences.

http://iwillnotshrink.tumblr.com/

 

How are you?

I think we have the same thing.  I was recently diagnosed and started Radiation and Temodar last week.   

michelleahung

any updates?

Hi all,

I was just wondering how everyone's treatments are going? My husband was diagnosed 2 weeks ago and we are debating how to proceed. Any input will be helpful.