Astrocytoma Grade III-Survivor

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Comments

  • dougbankston
    dougbankston Member Posts: 2
    TAMMY S said:

    you just desribed me
    I have been living in a fog for weeks. It is driving me crazy. I have right tempral lobe GBM grade 4. 1st resection on 1/7/11 2nd resection 1/17/12

    GBM

    My daughter (21 yrs old) just had a gmb taken out (frontal lobe) a couple weeks ago. her 3rd radiation treatment is today... Just curious,

    how are you doing? what's a "resection" ???  Doug

    [email protected]

  • dougbankston
    dougbankston Member Posts: 2

    I had a complete resection.
    I had a complete resection. Anaplastic Oligendrioma a small portion of which was grade III and the majority of which was thought to be grade II. I am getting ready to do radiation for 6 weeks and chemo for a year. I meet with the radioncologist and oncologist next week to work out the particulars. Keep your head up before this I knew of no such thing as a brain tumor especially not brain cancer. Two people I know with GBM grade IV survivors of 12 & 14 years with no reocurrance. Prayer is powerful.

    GBM

    Hello, my daughter (21) just had a GBM taken out a few weeks back. her 3rd radiation treatment is today.. I'm scared... Please talk to me, send me an e-mail about your experiences etc.... give me some advice... thanks   Doug    [email protected]

     

  • mjcallah
    mjcallah Member Posts: 7
    heyrabbit said:

    hi good luck i had a grade 3/4 astrocytoma left frontal lobe 10 years ago wow if you have any questions about it and the last 10 years please get in touch and i will help you out

    AA Grade III Survivor - 13 months

    Hi,

    I am also a AA Grade III left frontal lobe survivor (13 months).  Have done well on Temodar 5/23 maint. cycle with no deficits, no side effects and no recurrence.  Working 2 jobs, working out every day at the gym, and taking good care of myself.

    Wondering about life after Temodar.  My maint cycles will end after 2 more cycles (just finished cycle 10 of 12).  Can you recommend anything I can do after maintenance ends.  Suggestions for continued success against this horrendous beast?

    Look forward to hearing from you.  God bless us all!

    Mike (Omaha, NE)

     

     

  • LAW1960
    LAW1960 Member Posts: 4
    AA grade 3

    My 24 year old daughter was diagnosed with a brain tumor at the end of June in her front left lobe, she was having headaches for about 2 years and the doctors kept saying, allergies, migraines etc... and finally they did a CT scan which led to an MRI. She had surgery on July 17th in boston and was diagnosed  on August 1st with AA grade 3. She started her treatments on Sept. 3 which was yesterday. Radiation and Temador for 6 weeks and then a 4 week break and then aprox. 6 months of Temador 5/23 depending on the scans. They told us they got the entire tumor out in Boston and then when we got back to our home town, with many stressful insurance issues, we were told there was residual left. They finally got the treatments started which was stressful waiting for that to happen. My daughter Erica is an inspiration to all of us. She is so upbeat and positive. She started a blog and updates all that is happening. She has many wonderful friends and family supporters. I am always looking at survival stories and it helps me with the hope of her living a long happy life! I cry alot when I am not with her because I wish it was me instead of her but only God knows why this happens. She is trying to eat really healthy and I wanted her to drink an herbal tea called HHA 4 herb tea but the Dr.s say that she shouldn't have anything like that while on the treatments. She was looking and asking if there were any young people around her age going through the same thing so she could maybe talk to them. If anyone out there wants to reach out ...let me know and maybe you two can connect. I pray a lot and I am thinking positive in hopes that she will be able to say "I am a survivor". I pray for all of you and your families going through this trying time. Keep the faith and stay positive. Don't forget its okay to cry. If anyone has any information on the trials I see some people talking about can you give me that information. Is it hard to get on a trial? I dont' know much about it so if anyone has info that would be great. Thanks for listening...Erica's mom, Laurie

  • LAW1960
    LAW1960 Member Posts: 4
    kullapa said:

    My Best Friend with Astrocytoma Grade III

    Hello all;

    I am an international  student living in Ohio. My best friend who I am living with is diagnosed with anaplastic astrocytoma grade III about three weeks ago. Our world collapsed and everything has been changed. We are quite depressed because we are away from home so there is just a handful of people to turn to. My friend is working as a postdoctoral researcher and she has about half year left to go. She had a breast cancer two years ago and finding out this nasty brain tumor is such a burden. I feel so derperate but I have to be strong for her.

     

    We were told by the first hospital we went when she fell down that her tumor is inoperable. So we are trying to get a second opinion at University Hospital in Cleveland. Dr.Andrew Sloan, the Neurosurgeon, said he can do something with this tumor but we have to make sure it is not pressing on her speech center. Tomorrow we will go up there to have functional MRI. The major problem is that English is not her native language and we are very worry how good the data will be. Anyway I will be positive and keep expecting for miracles.

     

    My friend is the sweetest girl I have ever met in my life. It never be easy to realize what she has to go through.

    I am sure all of you are such a sweet and nice people. Thank you for sharing a precious opinoin and experience. I am one of your people. You are all in my prayer. I and my bestie will fight with all we have.

     

    KC

    Hi KC

    I am so sorry that your friend is going through this. My daughter is going through this too and she was treated in Boston MA at the Bringham and Womens Hospital affiliated with Dana Farber. They are wonderful there and she got the very best treatment. They have an intraoperable MRI there which is a wonderful thing to have during brain surgery. It helps with removing as much as possible that the naked eye can not see! She will be in my prayers. If I can give you any information as far as doctors in Boston, let me know...I will never forget them! Thankful for Boston. Be positive!

  • Panday
    Panday Member Posts: 2
    Astrocytoma

    good day, my brother had tingling and numbness of his right side of the body, actually it was started from head and went down to his arm and feet he is hard to walk and move.. Last week we had MRI for him and the result was 1.large intradural/intramedullary tumor mass lession involving d medulla &upper cervical cord(c1,c2,3-4 cord level) w/ compression of d cerebelar tonsils. 2.astrocytoma is d main considration. how could we survive in this case? do you have any idea or people who has survive in this cases? And what is the treatment for that? Please help us.. 

  • Panday
    Panday Member Posts: 2

    Mom's AA3

    Hi. Mi mother was diagnosed with grade 3 astrocytoma. I'm from the Philippines. I've been reading here a lot after my mom's surgery. I Love my mom so much. It's really inspiring to know that there are many survivors that beat the doctor's timeline of 2-5 years. her tumor was removed last april. God Bless us all ! i want my mom to be treated in the United States but we don't have enough money to go there.

    Astrocytoma

    Hi kabayan, hows your mother? im from philippines also my brother had the same case of your mother, may i know where they conduct the surgery of your mom? Paano ba kta makakausap? Sana kpg nabasa mo ung post na ito email mo q sa [email protected] my gusto lng ako itanong.. 

     

  • Ellenbh1
    Ellenbh1 Member Posts: 1
    serenefhf said:

    Help Jose!

    How do you survive this? I went to do a research and I know that anaplastic astrocytoma haloves survival rates and can only live for 3-5 years.

     

    what did you do to survive?

    how long has it been since your diagnosis?

    Anaplastic astrocytoma survivor

    Hi,

    I am new to CSN. I was diagnosed with AA3-4 (4 in the center of the tumor) in October of 1993. I was a happy,single (divorced 6 months) mother of 4 and worked full-time. Life was good and I looked and felt the best I had in years! I was on top of the world...til I had a grand mal seizure after work (in front of my young children). My life turned on a dime that day, but after surgery, chemo (11 months) and radiation (8 weeks) I'm still here to tell about it. Life is good again! It will be 20 years next month. Every doctor I've ever talked to tell me that it will come back, but that could take a long time and I'll probably die of something else before that happens. I don't like those doctors. Wink

     

    p.s.

    Right front lobe

     

  • tberg117
    tberg117 Member Posts: 1
    Just diagnosed with glioblastoma

    Hi  I am Todd,  I was just diagnosed with GBM  stage three  with an unoperable tumor.  starting Radiation and Chemo  sept 23 2013.  Radiation for 6 weeks,  Oral chemo for a yr.  I am very scared and dont know what to expect. Please give me the truth about what I can expect.  I am 55 yrs. Old  it all started july 26 2013. with a grand mall seizure.

  • WEF1823
    WEF1823 Member Posts: 4
    bear2222 said:

    I do not know where you tumor is located but if it is in the frontal lobes please answer me this at all times do you understand what is going on around you and are you faced with a time problem as to where people should be, what time it is etc. Please post if the tumor made you feel apathy and did you know you where feeling this way or after you said some did you feel sorry for what you said. Thanks

    The symptoms u r describing

    The symptoms u r describing came from my seizure medication. When we changed that, this issue slowly dissipated. 

  • Hope for Adam
    Hope for Adam Member Posts: 1
    heyrabbit said:

    hi good luck i had a grade 3/4 astrocytoma left frontal lobe 10 years ago wow if you have any questions about it and the last 10 years please get in touch and i will help you out

    Love to hear your story

    My Son, 33 years old with a wife and 4 children was diagnosed with AA 3 this past February, after have a few seizures, at first he did not know what was happening just said he felt wierd.   His family Dr sent him for all kinds of blood work but never thought to check his brain.   I guess he wasn't explaining his wierdness correctly so no one understood that it was seizures.  Anyway, I  finally convinced Adam to go to the hospital, it was a long night on Feb 2nd but they knew within hours that he had a tumor or something.   An MRI a couple of days later confirmed in and surgery that removed 1/3 of it followed on Feb 7th.   Feb 22nd he was given the prognosis.  Surgeon said the norm was about 2-3 years and the radiologist onocology said more like 5 years is the norm.   Since then Adam had 6 weeks of radiation with chemo (temodal) that was finished in May and now he takes Temodal (chemo) for 5 days with a 23 day break for 6 months.   They say the MRI looks good and no change from July which they are happy with, but they are very vague with their information.   Adam has a very positive additude and although he has not worked since Feb, as he was a carpenter/ journyman framer he's enjoying life and spending as much time with his family as he can.   He has not given up hope as he would like to see his 2 boys and 2 girls, ages 5 - 11 finish school!!!   I would like to try some naturopathic medicine, not sure if anyone has anexperience or tried anything that has worked.   Adam has also changed his diet, tries to limit his sugar and eats lots of fruit and vegtables.

    Thank you for reading my story. 

     

  • Beck99
    Beck99 Member Posts: 2
    Ellenbh1 said:

    Anaplastic astrocytoma survivor

    Hi,

    I am new to CSN. I was diagnosed with AA3-4 (4 in the center of the tumor) in October of 1993. I was a happy,single (divorced 6 months) mother of 4 and worked full-time. Life was good and I looked and felt the best I had in years! I was on top of the world...til I had a grand mal seizure after work (in front of my young children). My life turned on a dime that day, but after surgery, chemo (11 months) and radiation (8 weeks) I'm still here to tell about it. Life is good again! It will be 20 years next month. Every doctor I've ever talked to tell me that it will come back, but that could take a long time and I'll probably die of something else before that happens. I don't like those doctors. Wink

     

    p.s.

    Right front lobe

     

    Your story is so encouraging!

    Ellenbh1- Your story is so encouraging!  Did you have a complete resection?  Who was your surgeon?  My husband is 45 and has always been a very fit guy. He also had a grand mal seizure in front of our kids. He was diagnosed with AA grade II with some III in the right frontal lobe. He had a 90% resection. The remaining portion is in his thalamus. He is being treated at MD Anderson. This all happened in March of this year. So scary but he is doing great and back to work. All the praise goes to God!!  Any info or advice would be appreciated. 

  • PaulyK
    PaulyK Member Posts: 2
    Ellenbh1 said:

    Anaplastic astrocytoma survivor

    Hi,

    I am new to CSN. I was diagnosed with AA3-4 (4 in the center of the tumor) in October of 1993. I was a happy,single (divorced 6 months) mother of 4 and worked full-time. Life was good and I looked and felt the best I had in years! I was on top of the world...til I had a grand mal seizure after work (in front of my young children). My life turned on a dime that day, but after surgery, chemo (11 months) and radiation (8 weeks) I'm still here to tell about it. Life is good again! It will be 20 years next month. Every doctor I've ever talked to tell me that it will come back, but that could take a long time and I'll probably die of something else before that happens. I don't like those doctors. Wink

     

    p.s.

    Right front lobe

     

    This gives me hope!

    I'm new here too. My husband was disagnosed in March this year, grand mal seizures in 2011 wrongly dianosed as a stroke causing them. Surgery and raiotherapy and started chemo in August a scan then showed new growth outside the radiation area. Latest scan has been taken and we get the results on Monday it's going to be a very long weekend. My husband is 46 and we have a 4 year old. So good to hear of people with poitive stories.

  • PaulyK
    PaulyK Member Posts: 2
    Ellenbh1 said:

    Anaplastic astrocytoma survivor

    Hi,

    I am new to CSN. I was diagnosed with AA3-4 (4 in the center of the tumor) in October of 1993. I was a happy,single (divorced 6 months) mother of 4 and worked full-time. Life was good and I looked and felt the best I had in years! I was on top of the world...til I had a grand mal seizure after work (in front of my young children). My life turned on a dime that day, but after surgery, chemo (11 months) and radiation (8 weeks) I'm still here to tell about it. Life is good again! It will be 20 years next month. Every doctor I've ever talked to tell me that it will come back, but that could take a long time and I'll probably die of something else before that happens. I don't like those doctors. Wink

     

    p.s.

    Right front lobe

     

    This gives me hope!

    I'm new here too. My husband was disagnosed in March this year, grand mal seizures in 2011 wrongly dianosed as a stroke causing them. Surgery and raiotherapy and started chemo in August a scan then showed new growth outside the radiation area. Latest scan has been taken and we get the results on Monday it's going to be a very long weekend. My husband is 46 and we have a 4 year old. So good to hear of people with poitive stories.

  • Magillicutty
    Magillicutty Member Posts: 2
    Ellenbh1 said:

    Anaplastic astrocytoma survivor

    Hi,

    I am new to CSN. I was diagnosed with AA3-4 (4 in the center of the tumor) in October of 1993. I was a happy,single (divorced 6 months) mother of 4 and worked full-time. Life was good and I looked and felt the best I had in years! I was on top of the world...til I had a grand mal seizure after work (in front of my young children). My life turned on a dime that day, but after surgery, chemo (11 months) and radiation (8 weeks) I'm still here to tell about it. Life is good again! It will be 20 years next month. Every doctor I've ever talked to tell me that it will come back, but that could take a long time and I'll probably die of something else before that happens. I don't like those doctors. Wink

     

    p.s.

    Right front lobe

     

    Hi Ellenbh1

    I'm new to CSN, too.  I had been spending the majority of my time reviewing the American Brain Tumor Association website (ABTA).

    I am glad to see a post that is recent, as many of them are dated.  My husband also has AA3- right frontal lobe.  We also became
    aware of his tumor as a result of a Grand Mal seizure while he was behind the wheel.  Fortunately, we were stopped at a intersection
    and I was able to dash around to the driver's side and stop the car.

    All MRI's have been stable since starting intra-arterial carboplatins chemotherapy and Avastin infusion.  We've got 4 more months of
    treatment to go.

    Your post is a gift.

    Thanks!
    Magillicutty

  • mccindy
    mccindy Member Posts: 81
    tberg117 said:

    Just diagnosed with glioblastoma

    Hi  I am Todd,  I was just diagnosed with GBM  stage three  with an unoperable tumor.  starting Radiation and Chemo  sept 23 2013.  Radiation for 6 weeks,  Oral chemo for a yr.  I am very scared and dont know what to expect. Please give me the truth about what I can expect.  I am 55 yrs. Old  it all started july 26 2013. with a grand mall seizure.

    diagnosis?

    Hi Todd,

    Where are you being seen for your tumor treatment? I'm concerned as to your diagnosis, as GBM is the grade IV variation of Astrocytoma.  Grade III would be an Anaplastic Astrocytoma.  I'm a bit concerned that you are not getting all the information you need.  There is a wide difference in treatment and prognosis between grade III and grade IV.  The best thing for you to do would be to get a second opinion at a major brain tumor center.  Depending on where you live there are many options:  Mayo in Rochester, MN; NOrthwestern in Chicago; Johns Hopkins out east; MD Anderson in TX.  I was originally told my tumor was inoperable and it turned out that it was not. 

  • dchow200
    dchow200 Member Posts: 2
    Ellenbh1 said:

    Anaplastic astrocytoma survivor

    Hi,

    I am new to CSN. I was diagnosed with AA3-4 (4 in the center of the tumor) in October of 1993. I was a happy,single (divorced 6 months) mother of 4 and worked full-time. Life was good and I looked and felt the best I had in years! I was on top of the world...til I had a grand mal seizure after work (in front of my young children). My life turned on a dime that day, but after surgery, chemo (11 months) and radiation (8 weeks) I'm still here to tell about it. Life is good again! It will be 20 years next month. Every doctor I've ever talked to tell me that it will come back, but that could take a long time and I'll probably die of something else before that happens. I don't like those doctors. Wink

     

    p.s.

    Right front lobe

     

    Hi Ellenbh1 or All,

    Hi Ellenbh1, or ALL,

    Was your gemistocystic Astrocytoma?

    What kind of diet are you eating?

    What other medication other than doctors are you taking... such as green tea, or immunocal?

    please send response to dc[email protected] also, want to beat the time that doctors gave me, if I don't do anything to help myself then my time can be up as doctors set it...

    Please provide any diet or treatment or supplements that can work.... I am google alot and getting more and more confused about what is good for me...

    thank you, David

  • dchow200
    dchow200 Member Posts: 2
    Help Jose!!!

    Please, how did you survive?

    please also send email response to [email protected]

    Thank you, David

  • vald
    vald Member Posts: 1
    brain tumor

    Hi Jose,

    How are you! I'm hoping you are in great health. I write you because my mom. She has astrocytoma 3/4 grade, she had surgery on June 25th and 6 weeks concurent radiation and chemo with temodar. She was prescribed 6 courses of aditional chemo, as well, but she refused to take it. Now they are 6 months since her surgery and the tings are looking worsening. There is may be new growth in tumor bed, althoug I'm hoping it is scar tissues.

    Please, let me know what do you take? Any additional supplements or any diet?

     

    Thank you!

    Valeria

  • avenzor7
    avenzor7 Member Posts: 3
    newly dx with AA3

    Hello everyone my name is Amy I'm 30 yrs old and just found out 2 days ago about my dx.  It all started 3mths ago when my whole left side went numb, I went to the ER thinking omg I am having a stroke at this age.   Well after an mri I found out I had a mass on my right frontal lobe approximately 3cm.  I had all the visible tumor removed on Dec 16.  After the awake crainiotomy  I was able to move my left side and the numbness was completely gone.   This was a great feeling because the surgeon had explained to us I might have the numbness for ever and also problems with movement since the tumor was so close to the motor function.  I started radiation  yesterday and will start chemo next week.   This journey has been by far the most difficult and scary one in my life.   It has also made me a stronger person. Trying to live one day at a time.   I've been very blessed because of my family and friends that have not left my side and most of all my love and faith for God has grown tremendously.   I must confess I am so happy I found this site.  Reading every one else's stories help because I know now that I'm not the only one fighting this battle.   I want to let everyone here know that I will be praying for all of us battling cancer.   For anyone that has gone through radiation and chemo, any pointers as to what to expect or what helped I would greatly appreciate any feed back. Thank you.