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Brainstem Glioma

DebbieI
Posts: 5
Joined: Jun 2009

My 26 yr old son was just told he has a brainstem glioma. Not commom for his age and we are serching for treatment and getting many different opinions, Anyone been there?

sue Siwek
Posts: 281
Joined: Jun 2009

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.

taz2138
Posts: 1
Joined: Oct 2009

can you give me a name.

sue Siwek
Posts: 281
Joined: Jun 2009

depends on where you live. the best place in my opinion is duke. but, i will say that we went to henry ford in detroit, michigan and my husband has survived nearl 10 years. google best place for brain tumor care in your state. good luck.

DebbieI
Posts: 5
Joined: Jun 2009

We ended up seeing Dr Blakely at John Hopkins. Treatment is being done in our home town under they supervison. Very impressed!!

sue Siwek
Posts: 281
Joined: Jun 2009

good going. best wishes .

sue Siwek
Posts: 281
Joined: Jun 2009

good going. best wishes to you both. keep this site posted.

pab11
Posts: 4
Joined: Dec 2009

My grand baby (6yrs.) was diagnosed with brainstem glioma. She did her radiation treatments,it shrunk by 40% but her last MRI shows it's starting to get active again.Could you tell me what are yall doing?

sue Siwek
Posts: 281
Joined: Jun 2009

where are you going for treatment? go to the best teaching hospital in your area. good luck!

pab11
Posts: 4
Joined: Dec 2009

They are bringing her to the Burzynski Clinic...but looking for other options

helpfindacure
Posts: 4
Joined: Jul 2010

Where is she getting her treatments from ? And I would recommend MD Anderson Hospitals getting a secind opinion and going there they have the best doctors that specialize in Brain Cancer over there see their Oncology Department they will take great care of her don't let it get out of control and make the necessary adjustments now while you have time. Thats the important thing is time.

jerica2010
Posts: 1
Joined: Jul 2010

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 !

pbb
Posts: 1
Joined: Jul 2010

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.

pab11
Posts: 4
Joined: Dec 2009

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

Anna_O
Posts: 2
Joined: Jan 2010

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.

Dante
Posts: 9
Joined: Jan 2010

My husband was just diagnosed with GBM on the brain stem after he had a small stroke (kind of think it was the tumor all the time and he never had a stroke). We were given a horrible prognosis (less than one year). You father is 18 months into treatment. Maybe there is hope. We just started radiation and temodar.

agariepy
Posts: 3
Joined: Nov 2009

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

helpfindacure
Posts: 4
Joined: Jul 2010

You can also add to if you haven't already is to add brocilli to his diet and Noni juice the Tahitian Noni drink that is real good and will make a huge difference.

okgeologist
Posts: 3
Joined: Jun 2010

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.

ogniesperanza
Posts: 1
Joined: Jan 2012

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.

helpfindacure
Posts: 4
Joined: Jul 2010

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

helpfindacure
Posts: 4
Joined: Jul 2010

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.

Khris3232
Posts: 1
Joined: Jul 2010

We found out my sister Keylee had a brain stem Glioma in April 2008. She went threw radiation soon after we found out. We just recently found out that the tumor may be coming back or that it could be radiation necrosis. Which ever it is the Drs. say that there is nothing they can do to cure her it is eventually going to take her life. I don't know how true that is Because they also told us when they diagnosed her that she only had a 20% chance at making it 2yrs after diagnosis. It has been 3yrs and 3months. I have been trying to find a place that can give us any hope. But so far everybody says the same thing about her. My sister is a very strong person she has been fighting so hard for so long and never once has she wanted to give up. I pray for all the families on here that a cure for this is found. They want to try some other medications on her to try and give her more time. But they say that it may not work. I am so glad I found this site. Maybe somebody could help us. Thank you for reading this may God bless you all.

Toshy's picture
Toshy
Posts: 23
Joined: Jul 2010

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.

pattin
Posts: 1
Joined: Mar 2013

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!

frankbury
Posts: 1
Joined: Jun 2011

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
Posts: 7
Joined: Jun 2011

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
Posts: 2
Joined: Jul 2011

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?

Kerri77
Posts: 1
Joined: Nov 2013

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

Eng
Posts: 11
Joined: Jul 2011

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
Posts: 4
Joined: Jul 2011

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.

snookiesbaby
Posts: 1
Joined: Jan 2013

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

 

bddixon83's picture
bddixon83
Posts: 2
Joined: Apr 2013

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/

 

Mel_22
Posts: 1
Joined: May 2014

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!

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