Grade 3, an anaplastic astrocytoma

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  • alutiiqmom
    alutiiqmom Member Posts: 256
    megansmom said:

    Michelle, what you are
    Michelle, what you are dealing with is similiar to my daugther! She is 15yrs old diagnosised with AA3 in Nov. 09, we are done with radiation and now chemo continues for over one yr. We thought that she was doing so well in Feb. when suddenly seizure, now back on Keppra no more seizures have occurred. Everyday you want to be thankful for that day, but I go though the why her almost daily. I think for us after surgery that got most all of the tumor we were thankful and felt the worst was over then the diagnosis, and not the never knowing if it will return. I know she is scared but does not talk of it much, she has an MRI next week and we go though this holding our breath and all the fear. I know likely you have the same feeling, you want to know but don't want to know. She is not receiving the Temador chemo, they felt that as a teenager it was best to do the PCV chemo, and if Temador was needed later for recurrent tumor it was an option. I don't want to think of her having to go through all of this again. I hope for her to experience all the wonderful things in life that most people get to, I want her to be able to not have to think of this everyday. I hope for you to not have to think of this awful cancer everyday. I try to think of things to be thankful for daily, today I have my children and my husband, Megan is not sick from chemo, and life goes on today. I will always long for the days we had before the brain tumor.
    Thank you for letting me share, I hope today you can be thankful for not feeling ill!
    Stacy

    How is your daughter?
    HI:
    My 17 year old has anaplastic astrocytoma, grade 3. They are using the Temodar and it horrible. It makes her so sick she can't do anything for 7 days and loses weight every time. What is the other chemo drug you mentioned for teenagers? What hospital do you go to?

    I hope and pray your daughter is busy doing the things she loves. Many blessings to your family.
  • alutiiqmom
    alutiiqmom Member Posts: 256

    *********UPDATE ON MY KID SISTER**********
    For those who haven't seen my thread entitled "Fast Recovery from AA3, Miracle or Mistake," please take a look at my latest post. My then 25-year-old kid sister was diagnosed with AA3 in March of 2009 and in a year's time she is now cancer free!! Miracles do happen, please do not lose faith. We can win this war against cancer.

    Hugs and blessings to all.

    Praise Be to God
    HI:

    Praise be to God! I hope your sister is doing well. thank you, Thank you for the hope you are giving. God Bless you.
  • Haley75
    Haley75 Member Posts: 8

    My nephew
    His tumor was in the right insular (pushing on the temperal lobe) and was about 6 cm, about the size of an egg. He had surgery to remove the tumor and doctor's believe (from before/after) tests that all the tumor was removed. His surgeon felt like it was a grade II, but when the pathology came back, the radiologist graded it a III.

    They called a meeting of the Tumor Board and the majority decided a grade III. He had six weeks of radiation and the doctor's recommended no chemo.

    He's done remarkably well; he needed very little physical therapy. He's past the six month point and is back at work and driving. The doctor's have been up-front about the potential return of cancer and had said he will have chemo then.

    He's very upbeat and positive, but of course, sometimes it hits him. They have a three-year-old son and you can't help but think about the future. Their faith is very strong, and we all know how very blessed they are.

    He recently said he wished he could find someone who has done well and survived past the diagnosis. He has not been willing to attend support group meetings so none of us have pushed it.

    I posted wanting to try to find someone who might be willing to talk to him by e-mail ... and just want to pass along the information. I don't know if he will do it, but want him to have the opportunity.

    Through this journey, I try to support, encourage and pray. Thanks for your help.

    Need words to help me get through !!
    This sounds so like me I was diagnosed with aa111 on Feb the 14th this year had surgery on 23 march they got 95% out it was top right and superficial recovery was ok had 6 weeks of radio no chemo they said they would use it later if necessary this has ripped my world apart I'm 33 years old and have five fantastic kids oldest is 14 youngest is 4 I'm so so scared I just want to see my kids grow up ... This is a nightmare I finished radio 7 weeks ago apart from being bold and being tired life is as normal as it can be .. I go for my MRI first week of October and I'm praying so hard that it will be good I live in wales uk x
  • momsworld
    momsworld Member Posts: 135
    Haley75 said:

    Need words to help me get through !!
    This sounds so like me I was diagnosed with aa111 on Feb the 14th this year had surgery on 23 march they got 95% out it was top right and superficial recovery was ok had 6 weeks of radio no chemo they said they would use it later if necessary this has ripped my world apart I'm 33 years old and have five fantastic kids oldest is 14 youngest is 4 I'm so so scared I just want to see my kids grow up ... This is a nightmare I finished radio 7 weeks ago apart from being bold and being tired life is as normal as it can be .. I go for my MRI first week of October and I'm praying so hard that it will be good I live in wales uk x

    good luck with your MRI. my
    good luck with your MRI. my only child 13yr has AA3 and it has been a long road, She was diagnosed March 27 2010 and has been through 4 brain surgeries and multiple other surgeries related to this evil disease. On a brighter note, She just had her 4th clear MRI. no evidence of disease. 10 months cancer free. Don't give up. this is your new normal and that's ok, what is normal anyway? everyone has something to deal with, this is our thing. One day, you and my daughter will be wearing something that say 'Brain cancer survivor'. Stay strong and never give up hope. Everyday there are new things being discovered for this and I have faith that God will take care of all of us
  • Haley75
    Haley75 Member Posts: 8
    momsworld said:

    good luck with your MRI. my
    good luck with your MRI. my only child 13yr has AA3 and it has been a long road, She was diagnosed March 27 2010 and has been through 4 brain surgeries and multiple other surgeries related to this evil disease. On a brighter note, She just had her 4th clear MRI. no evidence of disease. 10 months cancer free. Don't give up. this is your new normal and that's ok, what is normal anyway? everyone has something to deal with, this is our thing. One day, you and my daughter will be wearing something that say 'Brain cancer survivor'. Stay strong and never give up hope. Everyday there are new things being discovered for this and I have faith that God will take care of all of us

    Thank you so much for your
    Thank you so much for your kind words they really do help I'm having good days and bad days reading the Internet sire doesn't help exept this site which is full of hope .. I just can't help thinking what If ..... I just want a good MRI result I'm getting married in 11 days to my long term partner I just want to spend years with him and my kids 6 weeks today will be my first MRI since my radio finished 7 weeks ago ... Hope your daughter is doing ok xxx
  • Haley75
    Haley75 Member Posts: 8
    Diablita said:

    Praying for you
    I'll be praying for you and that you will still be cancer free. I just got diagnosed with your same type of tumor this past week, and all I ask GOD is to please let me see my little children grow up ( they are 2 and 4 yrs old ) even if I don't get cured, I ask GOD that with treatments and surgery I can still be around at least until my kiddos are adults.

    I pray for exactly the same
    I pray for exactly the same I'm 33 and have five fantastic kids aged between 14 and 4 all I want is to see them grow up .. This is a nightmare I hope and pray for good MRI results and the same for you ... This disease is cruel ... X
  • thatisme
    thatisme Member Posts: 1
    goodboy said:

    anaplstic astrocytoma
    hi
    my 6 year old son just completed treatment for anaplastic astrocytom grade 3. we joined a clinical trial since standard treatment (tamezolide) is not so promising. Thank G-d we just finished and his last MRI came back clear. Dr. Dunkel at memorial Sloan Kettering is conducting this study- I'm not sure if you fit the criteria for the study- or if the study is still 'open' but worthwhile to look into. I keep reading about people who had AA- but they were all adults- if anyone has information about a young child I would love to connect with them.

    good luck

    Can you tell me what type of
    Can you tell me what type of clinical trial was done? I know a young boy that is going through a clinical trial and I would love to hear a success story if it's the same one. What did you son have done?
  • DLB21
    DLB21 Member Posts: 2
    A Good Report on Type 3 Astrocytoma
    My son is Janet McCoy's nephew. He was diagnosed with an Astrocytoma in December 2008. He underwent 14 hours of brain surgery at MD Anderson in Houston. As his parents, we were scared to death. The doctors have to tell you all of the things that may happen. I am happy to report that he came through the surgery in great shape. He talked to us on the phone during the surgery as he was awake for about 8 of the 14 hours. Most of the tumor was graded as Type 2 but there were some Type 3 cells so the doctors recommended radiation. He went through that and was the classic case. The early weeks went quite good with a little loss of appetite. The last two weeks were rough. He was extremely tired and the treatments left him very nausious. He had a little problem with his balance but physical therapy did wonders for that. As I write this 3 years and 7 months after surgery, I am happy to report that he has done marvelously well. He and his wife have had a second child, who is now 21 months old. My son was able to go back to work shortly after his radiation. His health was wonderful before the tumor and has been pretty much the same since then. He now has MRI's every 4 months. We are all on pins and needles the week of the test but, thank God, each MRI has shown no change since the surgery. He leads a very normal life except for that one week every four months. On that week, we are all brought back to the fact that we are mortals. But our faith carries us on.
  • momsworld
    momsworld Member Posts: 135
    DLB21 said:

    A Good Report on Type 3 Astrocytoma
    My son is Janet McCoy's nephew. He was diagnosed with an Astrocytoma in December 2008. He underwent 14 hours of brain surgery at MD Anderson in Houston. As his parents, we were scared to death. The doctors have to tell you all of the things that may happen. I am happy to report that he came through the surgery in great shape. He talked to us on the phone during the surgery as he was awake for about 8 of the 14 hours. Most of the tumor was graded as Type 2 but there were some Type 3 cells so the doctors recommended radiation. He went through that and was the classic case. The early weeks went quite good with a little loss of appetite. The last two weeks were rough. He was extremely tired and the treatments left him very nausious. He had a little problem with his balance but physical therapy did wonders for that. As I write this 3 years and 7 months after surgery, I am happy to report that he has done marvelously well. He and his wife have had a second child, who is now 21 months old. My son was able to go back to work shortly after his radiation. His health was wonderful before the tumor and has been pretty much the same since then. He now has MRI's every 4 months. We are all on pins and needles the week of the test but, thank God, each MRI has shown no change since the surgery. He leads a very normal life except for that one week every four months. On that week, we are all brought back to the fact that we are mortals. But our faith carries us on.

    This is wonderful news, as I
    This is wonderful news, as I spend more time on here and researching this, I hear more and more positive stories. God is working his miracles
  • alutiiqmom
    alutiiqmom Member Posts: 256
    momsworld said:

    This is wonderful news, as I
    This is wonderful news, as I spend more time on here and researching this, I hear more and more positive stories. God is working his miracles

    Happy for you
    Amen to God's great works! This is a very very hard journey. But, I believe. We must all believe and pray especially during hard times.
  • I_Promise
    I_Promise Member Posts: 218 Member
    Hope456 said:

    Thank you for your post Rita
    I'm a 45 year old mom diagnosed February 8th with AA Grade 3 and undergoing similar treatment now. Feels great to hear people are being cured. I so want to get back to work and life as normal and feel good again. God has been amazing and my side effects are so few and less than most, but still really need to get back to work and some normalcy. I keep thinking I should be using this time off more productively, but just have no energy - is this normal. I'v had 20 radiation treatments now and 13 to go. Chemo at night by pill. I am also walking miracle and amazing doctors that I don't have more permanent damage. Isn't God good? Any suggestions on maintaining or gaining energy?

    Exercise
    Dear Hope,

    All of my sister's docs (she has aa 3) tell her over and over again: to have more energy, exercise. Exercise is an independent prognostic survival factor (pubmed).
    Take care,

    Julia
  • cushla69
    cushla69 Member Posts: 45

    Yes, I agree....have faith and hold on to hope!
    Hello!
    Our 25 yr old son David, who is an athlete in prime shape, playing college basketball, starting having migraines in May of 2009. When he started having double vision, his primary care doctor ordered an MRI which showed a large mass in his brain. We were terrified and shocked. He was referred the next day to Oregon Health Sciences University, and he had a craniotomy the next day. His surgeon and the entire operating team were wonderful...they removed all of the visible tumor and the encapsulating cyst. But the pathology report was bad...grade III anaplastic oligodendroglioma. No chromosome deletions so it would be less sensitive to chemo. The doctor told David and us that the median life expectancy is 3 to 5 years. We were beyond devastated. But I'm sure you all know how we felt. David's dr is a huge research dr, well-respected in the brain cancer field, but he lacks in the human relations dept. A total hope-destroyer. But we believe in God and would far rather trust in God than in human predictions. This is fact...the doctors DO NOT KNOW when someone will live and when someone will die. They are wrong so many times. They look at case histories and at statistics and then they make the best GUESSS that they can. The last time we saw that dr., he asked us if we had any concerns or questions or comments and I told him that we were okay but we needed him to not take away our hope. He acted surprised and said that there is a lot of hope. Quite a switch from when he first told us that David had brain cancer.

    We have a friend who was told he would die in 6 months from pancreatic cancer... a different kind of cancer, I know, but a very deadly one too. That was 10 years ago, and he has been cancer-free all this time. He has really encouraged me a lot. I have also read lots of survivor stories at http://sites.google.com/site/glioblastomamultiforme/survivorlinks and there are lots of people who have brain cancer and who beat the odds.

    Just some info about David. He had the surgery to remove the tumor. Made an amazing recovery. You would have never known he'd been sick. No deficits or handicaps from the surgery or the tumor. After he recovered from the surgery, he had 6 weeks of chemo and radiation. He was very weak and tired from the radiation and he lost his hair, but other than that, he tolerated that treatment pretty well. He says that he doesn't feel as sharp as he used to, and that he doesn't remember details like he used to, but I think some of that is from the stress he feels. He is a computer expert and he's always helping me with stuff, and he's lightening fast and very smart.....I don't think he has any problem with memory or learning stuff.

    David had his last radiation treatment in July. Now he takes chemo (Temodar) 5 days a month. It's a much stronger dose than when he took it during radiation. His hair grew back and he's doing really good. His issues right now are stomach trouble from pain medication, bad headaches, insomnia, and nausea when he takes the chemo. He is seeing a headache specialist right now and hopefully she will be able to help with the headaches.

    David will stay on Temodar for the rest of his life, or until (IF) the tumor comes back. He has had 3 MRIs since his surgery and there is no sign of a tumor growing back. His drs are all very pleased. David is working and playing basketball and golfing and riding his mountain bike. He's skinny and he's lost a lot of his muscle, but if you met him, you'd never know that he's in a fight for his life.

    God has been so good and so faithful to David and to our family. We are praying for David and holding on to hope. Our God is an awesome God...no matter what the outcome is.

    My friend with the pancreatic cancer said that his oncologist told him that some people, according to all the statistics, should die but are still living and are doing good...and the doctors do not know why. They just are. And that dr also told him that as long as someone is breathing and is alive, that there is hope. And I believe that is so true.

    We are not even one year into this, so I don't know how encouraging our story will be to people. I hope that there will be some seeds of hope planted in you by my note or by the notes of others. I am glad that I found this website. I need all the encouragement I can get.

    love and blessings,
    Cindy in Salem, OR

    i would love to be able to
    i would love to be able to talk to you cindy sue to you. u would be an inspiration to me, u already are. thank u, maybe somehow we could get in touch
  • cushla69
    cushla69 Member Posts: 45
    ChristyM said:

    I do not take the prognosis
    I do not take the prognosis information to heart. I never asked about it actually! I read enough on the internet, but I know that most of those compiled statistics are from older studies, that dont necessarily tabulate in all of what is available for treatment now. And remember there are no guarantees in life, for example, that since statistics say it can come back DOESNT mean that it will. I have read stories from people on the national brain tumor foundation who have battled GBM and have made it many years SO FAR. Still alive and kickin!
    I was diagnosed with an anaplastic astrocytoma in May of this year.

    christy i was diagnosed with
    christy i was diagnosed with AA3 in Nov 2010. ure statements r very true. would like to talk to u. Imma still alive and kickin also. Got to, my lil girl depends on me.
  • cushla69
    cushla69 Member Posts: 45
    Janet I have AA3 also, would
    Janet I have AA3 also, would love to talk to someone about it, maybe we could find a way to talk. Many blessing to u and ure family. Faith is what gets me through, plus my 15 year old daughter. she is my angel and my lifeline
  • honeycomb1968
    honeycomb1968 Member Posts: 11
    survivor
    please read my profile and keep the faith
  • honeycomb1968
    honeycomb1968 Member Posts: 11

    My nephew
    His tumor was in the right insular (pushing on the temperal lobe) and was about 6 cm, about the size of an egg. He had surgery to remove the tumor and doctor's believe (from before/after) tests that all the tumor was removed. His surgeon felt like it was a grade II, but when the pathology came back, the radiologist graded it a III.

    They called a meeting of the Tumor Board and the majority decided a grade III. He had six weeks of radiation and the doctor's recommended no chemo.

    He's done remarkably well; he needed very little physical therapy. He's past the six month point and is back at work and driving. The doctor's have been up-front about the potential return of cancer and had said he will have chemo then.

    He's very upbeat and positive, but of course, sometimes it hits him. They have a three-year-old son and you can't help but think about the future. Their faith is very strong, and we all know how very blessed they are.

    He recently said he wished he could find someone who has done well and survived past the diagnosis. He has not been willing to attend support group meetings so none of us have pushed it.

    I posted wanting to try to find someone who might be willing to talk to him by e-mail ... and just want to pass along the information. I don't know if he will do it, but want him to have the opportunity.

    Through this journey, I try to support, encourage and pray. Thanks for your help.

    survivor
    please read my profile hope it helps
  • honeycomb1968
    honeycomb1968 Member Posts: 11

    Keep your faith!!!
    Janet -

    I was first diagnosed with a brain tumor on July 10, 2007. I had surgery and my results came back that it was an oligodendroglioma grade ii. The dr. decided to wait and said that I had a good 5-20 years before the tumor would grow back and if I made it 5 years that I would be in the clear. My tumor grew back in 9 months and was bigger than before. (Before it was the size of a pop can.) I had a second surgery on September 16th this year and found out that it had come back as an anaplastic astrocytoma grade iii. I am now in the middle of radiation and chemo treatments. I also recieved the news that I had 2-5 years. Please, keep the faith!!!! I know it is hard, but they are only numbers! I am a 23 yr. old single mom to a beautiful 3 year old daughter and there is no way on earth that I can let those numbers keep me down! I will keep your family in my thoughts. If you would like to share more info feel free to contact me! I'm new to this also and it is definitely scary!

    [email protected]

    Thank You!

    survivor
    please read my profile hope it helps
  • honeycomb1968
    honeycomb1968 Member Posts: 11
    charlie said:

    Have Faith
    Hey
    My husband was diagnosed with anaplastic oligoastrocytoma grade III in May of this year. He had surgery, radiation, and chemo as well. He is 34 years old and a principal of a middle school. He has not missed many days of school, so we are extremely blessed. He is not very positive about this disease. I try to encourage and tell him to have Faith. Easy for me to say, I guess. The reason I am writing is there is a great book called, Healed of Cancer by Dodi Osteen. It is a great book about healing. Also check out carepages.com for other people that are dealing with brain cancer. Our oncologist and radiologist are christians and have said many times that the attitude and faith of the patient goes a long way in determining survival.

    survivor
    i'm here if you need to talk see my profile
  • honeycomb1968
    honeycomb1968 Member Posts: 11
    SP24 said:

    How are you doing?
    Hi,

    I was given hope by your 5yr cancer free report. I hope you are still doing wonderfully. I was diagnosed last October, and have been doing pretty well post surgery and radiation.

    survivor
    see my profile and keep the faith
  • honeycomb1968
    honeycomb1968 Member Posts: 11
    OCMenno said:

    Trusting in the Lord!
    My wife was diagnosed January 2006 with a mixed anaplastic astrocytoma and oligodendroglioma grade 3. Same as most of you, we were devastated when we heard the statistics, 3-5 years. My wife was 26 years old at the time. We have three small children, the youngest was only one month old when she was diagnosed. She had a grand mal seizure, rushed to Hospital, and had emergency surgery in Hamilton Ontario. They were able to remove most of the tumor, but not all. 60 days of radiation combined with chemo (Temador) and then another 12 cycles of chemo alone. She tolerated it fairly well. Actually had more problems with the steroids (to reduce swelling) than the chemo. Now 3 years later, still doing well. She has an MRI done every 2-3 months. Results were usually "stable". Unfortunately the last MRI, done in February, revealed that there was little change from the December scan but there is slow, definite progression since June 2008. When they looked at all of the scans there is a trend of tumor growth. This news really upset my wife. She has been very strong and positive the whole time, but now it seems like she is starting to think that it might just be God's will to take her home early. That she may not see her children grow into the fine Christian adults she is praying for. Over all she is still strong for the most part, but I do catch her from time to time sneaking away to cry and pray. We still trust in the Lord. Please pray for us, as we pray for all of you.

    survivor
    please read my profile if i can help please feel free to e-mail me