Brainstem Glioma

DebbieI
DebbieI Member Posts: 5
edited March 2014 in Brain Cancer #1
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?
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Comments

  • sue Siwek
    sue Siwek Member Posts: 279
    no, but do not give up. i
    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
    taz2138 Member Posts: 1
    sue Siwek said:

    no, but do not give up. i
    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.

    hospital
    can you give me a name.
  • sue Siwek
    sue Siwek Member Posts: 279
    taz2138 said:

    hospital
    can you give me a name.

    depends on where you live.
    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
    DebbieI Member Posts: 5
    taz2138 said:

    hospital
    can you give me a name.

    Brainstem glioma
    We ended up seeing Dr Blakely at John Hopkins. Treatment is being done in our home town under they supervison. Very impressed!!
  • sue Siwek
    sue Siwek Member Posts: 279
    DebbieI said:

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

    good going. best wishes .

    good going. best wishes .
  • sue Siwek
    sue Siwek Member Posts: 279
    DebbieI said:

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

    good going. best wishes to
    good going. best wishes to you both. keep this site posted.
  • pab11
    pab11 Member Posts: 4
    DebbieI said:

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

    Brainstem Glioma
    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
    sue Siwek Member Posts: 279
    pab11 said:

    Brainstem Glioma
    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?

    where are you going for
    where are you going for treatment? go to the best teaching hospital in your area. good luck!
  • pab11
    pab11 Member Posts: 4
    sue Siwek said:

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

    They are bringing her to the
    They are bringing her to the Burzynski Clinic...but looking for other options
  • pab11
    pab11 Member Posts: 4
    Hi Debbie
    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
    Anna_O Member Posts: 2
    same with my dad
    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
    Dante Member Posts: 9 Member
    Anna_O said:

    same with my dad
    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.

    GBM
    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
    agariepy Member Posts: 3
    diet change
    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
  • okgeologist
    okgeologist Member Posts: 3
    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.
  • helpfindacure
    helpfindacure Member Posts: 4
    Hello Debbie can you tell me
    Hello Debbie can you tell me a little bit about they type of brain cancer your son has?
  • helpfindacure
    helpfindacure Member Posts: 4
    Hello Debbie, My name is
    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.
  • helpfindacure
    helpfindacure Member Posts: 4
    agariepy said:

    diet change
    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

    You can also add to if you
    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.
  • helpfindacure
    helpfindacure Member Posts: 4
    pab11 said:

    Brainstem Glioma
    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?

    Where is she getting her
    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.
  • Khris3232
    Khris3232 Member Posts: 1

    Hello Debbie, My name is
    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.

    My name is Khristina
    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.
  • jerica2010
    jerica2010 Member Posts: 1
    DebbieI said:

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

    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 !