Diffuse Astrocytoma Grade II/Gliomatosis Cerebri -- anybody out there?

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  • Frenchie08
    Frenchie08 Member Posts: 2
    #22
    the_liz_army said:

    Left handedness
    Hey Frenchie08:

    Wondering... why was your husband's left handedness an issue when it came to deciding about an operation?

    Curiously,
    Liz

    Left-handedness
    Hi Liz

    His tumour is situated in right frontal-temporal-parietal lobes and apparently this is where his motor area is to control the left hand side of his body.

    That's an impressive scar. Hope you have recovered well.

    Andrea
  • Rory1987
    Rory1987 Member Posts: 120
    #23
    the_liz_army said:

    Left handedness
    Hey Frenchie08:

    Wondering... why was your husband's left handedness an issue when it came to deciding about an operation?

    Curiously,
    Liz

    left-handed
    HI liz

    They say that if you are a left-handed person most of your motor skills are controlled by the right portion of your brain, and vice-versa if you are right-handed. so if a persons right portion of the brain gets damaged then that could impair his/her motor skills in the left side of the body.
  • riakojohn
    riakojohn Member Posts: 2
    #24
    Gliomatosis cerebri-looking for support and answers
    my good friend was just diagnosed with this Gliomatosis cerebri and he wants me to go online to findout places where he can go to get help. We live in Canada and anything to help us will be great even if you can call that would be awsome. I really do not know what to do here I'm so worried about him.
  • alohajimmy
    alohajimmy Member Posts: 7
    #25
    fran4040 said:

    diffused astrocytoma in the brain
    Hi aloha,
    Sorry to hear about your daughter,,,,, My 22 yr old son also was diagnosed with a rare tumor in the brain Oct of this year,,,It's inoperable and diffused. He was attending Yale University and had to medically withdraw for his last year... I've taken him to Sloan Kettering in New York, and there are great doctors there, He had started chemo and whole brain radiation this week seems to do fine so far. There is a sloan kettering also in New Jersey which is a bit closer for us then New York but the same doctors from New York facilate there as well. He also has a grade 2 tumor with some stage 3 cells,,,They really don't know what the out come will be but hoping for the best. He has to do Raditaion for 33 days and chemo for at least 1-2 years. At this point we can only hope and pray, but the doctors there are very optomistic. Very clean and proffessional place to bring my son as a in and out patient. They do also clincal trials there so i think you should look into that one in New York first. There is a doctor Poznor who is been there for years and everyone thinks very highly of him, the smartest man on the face of the earth,,,he will tell u like it is and if there is anything that they would do different, my son is currently under his care and made reconmendations to the other two docters for the chemo and radation. My prayers are with you if you need any other info that i may be able to help please let me know.

    radiation and afterwards
    My daughter's initial radiation ends today. In 90 minutes we make a decision about how much additional radiation if any. One three day additional treatment or two three day treatments. Fortunately, the oncologist says she has seldom seen such a favorable result from whole brain radiation. But it remains and unfortunately the center of the remaining is in the part of the brain that is most vital. Any thoughts you can give me on what we can do to assist our daughter once the radiation is over would be appreciated.
  • nuezdallas
    nuezdallas Member Posts: 3
    #26
    riakojohn said:

    Gliomatosis cerebri-looking for support and answers
    my good friend was just diagnosed with this Gliomatosis cerebri and he wants me to go online to findout places where he can go to get help. We live in Canada and anything to help us will be great even if you can call that would be awsome. I really do not know what to do here I'm so worried about him.

    My mom was diagnosed with
    My mom was diagnosed with Grade 3 (Sep,14,2010) I hope all is well. :( its hard .. specially for my little sister and I. We were very close. But we are thankful :) she is okay
  • elisha777
    elisha777 Member Posts: 1
    #27
    grade 2 astrocytoma
    Hello to all!
    I just recently discovered that page when i was googleing about grade 2 astrocytoma. One of my very close friend had mini-insult in October 2011 and then his doctors invited me and one of his friend to appointment and I learned that my close friend had been already almost thirty year this grade 2 astrocytoma.
    Because my mom died into another cancer, I was little bit shocked when I heard those news. Unfornately as I have heard, this kind of brain tumors are very complicated to operate so there is only one option in my case- to trust God that He will help my friend out of that.

    Because I am working in another country at moment, recently I had opportunity to meet with him and right now she have suffering hearing unstability- which means that one moment she might listen perfectly but in next moment she don´t hear nothing.
    And also she have discovered dancer of remain blind in august 2011 which means taking some medicine to prevent it.
  • Livvie
    Livvie Member Posts: 6
    #28
    Frenchie08 said:

    Three-lobe Low-Grade/Grade II Astrocytoma
    It is good to hear you’re so positive after so much time.

    My 45 year old husband was diagnosed with a brain tumour of the right frontal, temporal and parietal lobes in September 2010. First symptoms were extreme tiredness, vague personality changes and then very frequent “episodes” (later diagnosed as partial seizures). He had months of tests that were all negative whilst “episodes” worsened in intensity and frequency. Eventually he had a full epileptic seizure. CT and MRI scans confirmed a three-lobe (possibly) low-grade glioma causing mass effect/midline shift which has been present for “many years”. Future treatment was advised as “wait & see with regular monitoring”.

    Numerous neurosurgeon opinions have confirmed the tumour is inoperable due to type, size, location and that he is left-handed. Currently, he is recovering from an “awake” craniotomy (respect!) to take biopsy samples. A Low-Grade/Grade II Astrocytoma was confirmed last week.

    We have had no prognosis except that which we have researched re WHO grading. For future treatment our gut feeling is to continue with the “wait & see with regular monitoring” approach as it is not a medical necessity to start radiation treatment. His health problems in recent months are due mainly to side-effects of steroids and epileptic drugs! Also, we are hoping other treatment options for this type of tumour (i.e. immunotherapy, gene therapy, biological therapy, hormone therapy etc) will be available to try at some point.

    We have had mixed responses as family, friends and colleagues have learned of the tumour. A few think we are mad to “wait and see”. Others think we are being “brave”. Actually, we are both positive people getting on with our lives and are determined to have as much fun as possible every day on our “journey” whatever its length!

    hi

    Hi Frenchie,

    Currently find ourselves in the same situation with my 60 year old husband having recently been diagnosed with the same condition.

    We are currently waiting for results to give a definitive,  yes it is grade 11 so that treatment options can be looked at. Surgery is out. Have also had some interesting responses along the line of 'Why don't they just cut it out?'

    Love the positive attitude - that's our approach too.

    Any experience you can share our strategies that have worked for you two would be most welcome.

    Cheers

     Livvie

     

  • Livvie
    Livvie Member Posts: 6
    #29
    diffuse astrocytoma grade II

    Hi Steve,

    My husband has just been diagnosed with the same thing - reading your post was like some one was in our heads expressing exactly what we are oing through and feeling.

    If you are able to share any of your journey so far, high and lows, it would be appreciated.

    Keep up the good fight,

    Livvie

  • Livvie
    Livvie Member Posts: 6
    #30
    Just joined

    Hi everyone,

     new to the network. Great thsat there is a place for discussion.

     Cheers

     Livvie

  • Caquigg46
    Caquigg46 Member Posts: 3
    #31
    Livvie said:

    hi

    Hi Frenchie,

    Currently find ourselves in the same situation with my 60 year old husband having recently been diagnosed with the same condition.

    We are currently waiting for results to give a definitive,  yes it is grade 11 so that treatment options can be looked at. Surgery is out. Have also had some interesting responses along the line of 'Why don't they just cut it out?'

    Love the positive attitude - that's our approach too.

    Any experience you can share our strategies that have worked for you two would be most welcome.

    Cheers

     Livvie

     

    Livvie, I was diagnosed with

    Livvie, 

    I was diagnosed with a low grade astrocytoma in 2007. It is diffuse so it is inoperable. I went to Duke and Hopkins and the advice I got from both was to do nothing until it changed. It ended up growing in 2009 and they put me on temodar for a year (oral- 80 mg every day). Since then it has shrunk tremendously and I am pretty healthy. However, I think the actual biopsy may be what caused it to change. They knew it was there starting in 2005 and I pushed for the actual biopsy. my advice for anyone going through this is to definitely see a neuro psychologist! Because I always looked well and felt pretty good, I didn't realize how the tumor in my frontal lobe was altering my personality and inhibitions drastically, I ended up losing my marriage in the process. I think hospitals should require brain tumor patients to seek emotional support and to give patients more Knowledge of the emotional and psychological effects. God Bless!

  • Livvie
    Livvie Member Posts: 6
    #32
    Caquigg46 said:

    Livvie, I was diagnosed with

    Livvie, 

    I was diagnosed with a low grade astrocytoma in 2007. It is diffuse so it is inoperable. I went to Duke and Hopkins and the advice I got from both was to do nothing until it changed. It ended up growing in 2009 and they put me on temodar for a year (oral- 80 mg every day). Since then it has shrunk tremendously and I am pretty healthy. However, I think the actual biopsy may be what caused it to change. They knew it was there starting in 2005 and I pushed for the actual biopsy. my advice for anyone going through this is to definitely see a neuro psychologist! Because I always looked well and felt pretty good, I didn't realize how the tumor in my frontal lobe was altering my personality and inhibitions drastically, I ended up losing my marriage in the process. I think hospitals should require brain tumor patients to seek emotional support and to give patients more Knowledge of the emotional and psychological effects. God Bless!

    Thanks Caquigg46

    Hi Caquigg46,

     Many thanks for your response  - it is really helpful to hear from someone who is living with the same issues as my my husband. The bioposy reults are yet to come in, but they think grade two (fingers crossed - he such a high achiever, I keep telling him this is one time we want him to get a low score!) THe decision not to have surgery was easy - this is a man whose life has revolved around his speaking abilities.

    Temodar has been mentioned as an option - thank yoiu for sharing how this treastment has wortked for you.

     Your insights into seeking emotiuonal support along with psychological are ones we have started to look at - the journey is both emotionally and psychologically draining - and that is without the effects on personality etc being taken into account!

    I hope this post finds you still fighting the good fight,

    Livvie

  • Shayna_Rae
    Shayna_Rae Member Posts: 1
    #33
    Checking in with hope

    Hi all,

    9 months ago my brother was diagnosed with GC, I'm noticing that a lot of the members from older threads are no longer active, and haven't been in some time. I'm reaching out on this thread to check in on those of you who were diagnosed with GC. I would love to connect 

  • Leentje
    Leentje Member Posts: 2
    edited July 2018 #34
    Shayna_Rae said:

    Checking in with hope

    Hi all,

    9 months ago my brother was diagnosed with GC, I'm noticing that a lot of the members from older threads are no longer active, and haven't been in some time. I'm reaching out on this thread to check in on those of you who were diagnosed with GC. I would love to connect 

    Hi

    Hi Shayna. How are youre brother? Is he fine? Mijn mom 74 has also GC. They going to start with radiation next week. But i have a bad feeling. Why are the other members no longer active?

    **** cancer. I would like to mail with somebody ? Sorry for my english im from Belgium. Kind regards X Leen

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