glioma brain stem tumor

klhr09
klhr09 Member Posts: 4
edited November 2013 in Brain Cancer #1

My name is Katie and I am 23 years old. After having headaches for months my doctor ordered a mri in July  and he called me the next morning and said something came up on the mri and he got me a appointment with a  local neurology doctor. Well he told  my husband, my mom n law and I  that it was a tumor but hasnt seen one like mine in his whole career and told me to go to a neuro oncology  doctor 4 hours away he said they are the best doctors to go to. So I went and they met with there team of doctors and reviewed my case and said the type of tumor I have in my brainstem is a glioma and  I start radiation treatments  very soon. Its a low grade glioma but Ive been having pain In my right arm ,elbow ,wrist,  fingers, and weakness in my arm and  weakness in  my right leg so since its low grade Im just going to do the radiation treatment without chemo and hope it shrinks the tumor.  Would like some advice or anybody to talk to who has the same thing, that would be great.

Comments

  • Sammiesdad
    Sammiesdad Member Posts: 9
    #2
    Hi Katie, I have the same

    Hi Katie, I have the same thing.  I will be glad to speak with you.  I was first dx nine years ago, but have had no treatment as the symptoms were very faint. Two months ago I started having lots of symptoms and it looks like its begining to grow.  There are very few adults with this desease so info is hard to find.  Let me know how I can help.

     

    BTW: Who and where is your nuero oncologist?  I am looking for second opinion.

     

    Trent

  • mccindy
    mccindy Member Posts: 81
    #3
    Sammiesdad said:

    Hi Katie, I have the same

    Hi Katie, I have the same thing.  I will be glad to speak with you.  I was first dx nine years ago, but have had no treatment as the symptoms were very faint. Two months ago I started having lots of symptoms and it looks like its begining to grow.  There are very few adults with this desease so info is hard to find.  Let me know how I can help.

     

    BTW: Who and where is your nuero oncologist?  I am looking for second opinion.

     

    Trent

    glioma

    I also have a grade II astrocytoma (glioma) but mine is in my left temporal lobe.  Not sure where either of you goes for your treatment, but I got my second opinion at Mayo in Rochester.  I see Dr. Julie Hammack there.  I had surgery done by Dr. Meyer.  They are both wonderful docs and I would highly recommend the Mayo Clinic to anyone seeking a second opinion (or first!) for brain tumor treatment.

  • klhr09
    klhr09 Member Posts: 4
    #4
    Sammiesdad said:

    Hi Katie, I have the same

    Hi Katie, I have the same thing.  I will be glad to speak with you.  I was first dx nine years ago, but have had no treatment as the symptoms were very faint. Two months ago I started having lots of symptoms and it looks like its begining to grow.  There are very few adults with this desease so info is hard to find.  Let me know how I can help.

     

    BTW: Who and where is your nuero oncologist?  I am looking for second opinion.

     

    Trent

    My doctors said that Ive had

    My doctors said that Ive had my tumor for along time,could have had it since childhood. At first my neuro doctor wanted to go ahead with chemo and radiation at my first appoinment but I was still really healthy and my tumor was not causing issues that I noticed anyways. I knew I was going to have do treatment at some point, I cant have surgery because its in my brainstem the only treatment is radiadation and chemo but I wanted to wait and keep a check on so the plan was to get regular mri's but since I started getting new symptoms I have to start treatments very soon for 6 weeks, 5 days a week . My neuro-onocology doctor is Dr.Hassan Fathallah at The University of Alabama in Birmingham,Al 

  • Sammiesdad
    Sammiesdad Member Posts: 9
    #5
    klhr09 said:

    My doctors said that Ive had

    My doctors said that Ive had my tumor for along time,could have had it since childhood. At first my neuro doctor wanted to go ahead with chemo and radiation at my first appoinment but I was still really healthy and my tumor was not causing issues that I noticed anyways. I knew I was going to have do treatment at some point, I cant have surgery because its in my brainstem the only treatment is radiadation and chemo but I wanted to wait and keep a check on so the plan was to get regular mri's but since I started getting new symptoms I have to start treatments very soon for 6 weeks, 5 days a week . My neuro-onocology doctor is Dr.Hassan Fathallah at The University of Alabama in Birmingham,Al 

    Hi Katie, may I ask about

    Hi Katie, may I ask about your new symptoms?  I have a lot of new and odd symptoms, just wondering if they are similar to yours?

    Thanks

    Trent

  • klhr09
    klhr09 Member Posts: 4
    #6
    Sammiesdad said:

    Hi Katie, may I ask about

    Hi Katie, may I ask about your new symptoms?  I have a lot of new and odd symptoms, just wondering if they are similar to yours?

    Thanks

    Trent

    New Symptoms

    My new symptoms now are pain in my right arm, shoulder all the way down my arm, my fingers hurt, 3 of my fingers feel like there kinda stiff(middle,ring finger and pinkie) all on my right hand, wrist hurts,elbow and weakness and my right leg is weaker than my left leg and Im right handed and my neuro doctor said I should be stronger in my right arm than my left so its a problem. He said my tumor is causeing pressure and thats why Im haveing nerve pain.

  • LeslieLand
    LeslieLand Member Posts: 49
    #7
    klhr09 said:

    New Symptoms

    My new symptoms now are pain in my right arm, shoulder all the way down my arm, my fingers hurt, 3 of my fingers feel like there kinda stiff(middle,ring finger and pinkie) all on my right hand, wrist hurts,elbow and weakness and my right leg is weaker than my left leg and Im right handed and my neuro doctor said I should be stronger in my right arm than my left so its a problem. He said my tumor is causeing pressure and thats why Im haveing nerve pain.

    Hi, Katie. I'm Leslie, and my

    Hi, Katie. I'm Leslie, and my husband was diagnosed in Jan 2011 with a pontine glioma (DIPG). Where are you being seen? Initially my husband was at MDA in Houston, and received radiation there. We have since moved to KS and is now seeing a neuro oncologist at KU in Kansas City. May I ask how old you are? 

    My husband also has what the neuro opthamologist dx'ed as 6th nerve palsy, and he's had that since childhood, making us wonder if he's had the cancer for a LONG time. (He was getting headaches for about a year prior to diagnosis.)

     

  • klhr09
    klhr09 Member Posts: 4
    #8
    LeslieLand said:

    Hi, Katie. I'm Leslie, and my

    Hi, Katie. I'm Leslie, and my husband was diagnosed in Jan 2011 with a pontine glioma (DIPG). Where are you being seen? Initially my husband was at MDA in Houston, and received radiation there. We have since moved to KS and is now seeing a neuro oncologist at KU in Kansas City. May I ask how old you are? 

    My husband also has what the neuro opthamologist dx'ed as 6th nerve palsy, and he's had that since childhood, making us wonder if he's had the cancer for a LONG time. (He was getting headaches for about a year prior to diagnosis.)

     

    Hi Leslie

    I'm 23 years old,my doctors are located in Alabama 

  • iso72
    iso72 Member Posts: 6
    #9
    I'm Italian and I do not

    I'm Italian and I do not speak English well, my uncle had your symptoms and had glioblastoma multiforme, you should contact the Hospital of San Diego, San Francisco or Cleveland, or others.

    see the link  http://www.tocagen.com/

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