Grade 3, an anaplastic astrocytoma

JanetLMcCoy
JanetLMcCoy Member Posts: 6
edited March 2014 in Brain Cancer #1
My nephew-in-law was diagnosed with an anaplastic astrocytoma, Grade 3, last December. He had surgery at MD Anderson Cancer Center, recovery, rehab (very little was required) and 6 weeks of radiation

He's recovered great, is back at work and driving.

I'm hoping to find someone who has beaten the doctor's timeline diagnosis of 3-5 years. My nephew-in-law is 30 years old and has a wife (my niece) and three-year-old son.

Their very strong Christian faith, great doctors and wonderful family and church family have gotten them through the last 11 months.

Please respond if you are willing to talk about your experiences.

Thank you.
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Comments

  • ChristyM
    ChristyM Member Posts: 38
    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.
  • JanetLMcCoy
    JanetLMcCoy Member Posts: 6
    Thank you. You are so right.
    Thank you. You are so right.
  • narthur
    narthur Member Posts: 7

    Thank you. You are so right.
    Thank you. You are so right.

    Me three!!!
    Thank you Christy! I also agree! It's not a death sentence unless you think that way. You can go through life thinking that about everything... I choose not to live my life that way. I think a positive outlook on things goes a long way in every area of your life, especially cancer!

    I'm 30yr old, single, no kids, was diagnosed in march of this year with anaplastic astrocytoma, grade III. My tumor was in my right frontal lobe. Had surgery,after surgery my left side didn't work(kinda like a stroke)inpatient and outpatient rehab,radiation/chemo, and now i'm on chemo. about to start my 3rd month out of 6. I haven't returned back to work or school. i want to but my energy is random and my profession is a high pace job (x-ray technologist)I'll get back there, soon enough!
    Glad to hear your newphew in law is doing well! He'll be fine with many more years to live! :)
  • ChristyM
    ChristyM Member Posts: 38

    Thank you. You are so right.
    Thank you. You are so right.

    Question
    If you dont mind, can you tell Nancy and I about your nephews tumor? How big was it, where was it located? After his initial chemo and radiation, did he continue chemo, and if so, for how long?
  • JanetLMcCoy
    JanetLMcCoy Member Posts: 6
    ChristyM said:

    Question
    If you dont mind, can you tell Nancy and I about your nephews tumor? How big was it, where was it located? After his initial chemo and radiation, did he continue chemo, and if so, for how long?

    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.
  • ChristyM
    ChristyM Member Posts: 38

    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.

    tumor
    my tumor was the size of a golf ball, and was in between a 2 and 3 also, however, my drs. decided to go ahead with the chemo also, I took it all through my radiaiton and am half way through the 6 month plan of 5 days a month. Nancy and I have talked through email--I am more than happy to talk with him if he wants to talk to someone--my email is [email protected].

    I have not been to a live support group either--just this website and the national brain tumor foundation. I since have met 2 woman at my work who have had benign brain tumors and we have spent some time talking about our situations too.
  • ashley_clark
    ashley_clark Member Posts: 3
    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!
  • JanetLMcCoy
    JanetLMcCoy Member Posts: 6
    Every,
    Thanks so much for your comments. You are so right about faith -- one thing we said is that we are going to believe in God first and the doctor's we are using second.

    You are all so courageous and an inspiration on how we all should live our lives.

    Thank you. Bless you.

    Janet
  • charlie
    charlie Member Posts: 1

    Every,
    Thanks so much for your comments. You are so right about faith -- one thing we said is that we are going to believe in God first and the doctor's we are using second.

    You are all so courageous and an inspiration on how we all should live our lives.

    Thank you. Bless you.

    Janet

    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.
  • JanetLMcCoy
    JanetLMcCoy Member Posts: 6
    Thank you; keep being encouraged
    Thank you, Charlie. You are so right about keeping faith; we all struggle with keeping our faith strong in everyday life, so it is understandable that someone facing this terrible disease. My family with cancer is about the same age as you and your husband -- they are both 30.

    Continue to encourage, pray and HOPE.

    I will pray for you and your family.

    Janet
  • I had just about the same
    I had just about the same set-up. Grade 3, went to MD Anderson had surgery,6 weeks of radiation, 13 months of Temodar,lost 30 lbs. That was in July 2003, this July was my 5 years cancer free.. I am back at work, the only thing that I have noticed is that I'm more tired than I was before.

    During radiation they told me that one in a thousand would lose their hair permenently. I was the one. So now I have to wear a hair piece. If I was a guy I wouldn't worry about it, but I scared one of my son's friend one night when I wasn't wearing a hat and decided to buy a hair piece.

    Six months post-op. I had a Grand Mal Seizure and ended up in ICU for a couple of days. Now I take Depokote daily and have it under control.

    What Dr. do you see at MD Anderson? I love that hospital, every person that we have met have been so nice and helpful. The only thing I don'at like is it's 6 hours from where live.
    That's a long drive.
  • rngoforth
    rngoforth Member Posts: 2

    I had just about the same
    I had just about the same set-up. Grade 3, went to MD Anderson had surgery,6 weeks of radiation, 13 months of Temodar,lost 30 lbs. That was in July 2003, this July was my 5 years cancer free.. I am back at work, the only thing that I have noticed is that I'm more tired than I was before.

    During radiation they told me that one in a thousand would lose their hair permenently. I was the one. So now I have to wear a hair piece. If I was a guy I wouldn't worry about it, but I scared one of my son's friend one night when I wasn't wearing a hat and decided to buy a hair piece.

    Six months post-op. I had a Grand Mal Seizure and ended up in ICU for a couple of days. Now I take Depokote daily and have it under control.

    What Dr. do you see at MD Anderson? I love that hospital, every person that we have met have been so nice and helpful. The only thing I don'at like is it's 6 hours from where live.
    That's a long drive.

    So glad to hear your story
    I am so glad to hear that your are doing well and are 5 years cancer free. My husband just finished his chemo treatments and took Temodar also. He also takes the Depokote for his seizures and has not had any on this medication. It gives me great hope that you are doing so well. My husband seems to really worry. His next MRI is in a month. I just know that everything will be great. Everyone, please keep the encouraging stories coming.
  • ronefx
    ronefx Member Posts: 11
    I had a grade 3 astrocytoma
    I had a grade 3 astrocytoma tumor removed feb 1993 at Herman Hospital in Houston, TX. I had 6 weeks of radiation and a year of chemotherapy at MD Anderson after the surgery. I was 18 then and am 34 now, just had a M.R.I. and everything still looks good. I trust and know the Lord had his healing hand involved. I found this site, looking for a website that has some survivors after effects, if that makes sense. I feel tired often and unmotivated. I also have other problems that doctors can't seem to find an answer to, so if anyone knows of a website please post it here, thanks.
  • OCMenno
    OCMenno Member Posts: 26
    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.
  • PBJ Austin
    PBJ Austin Member Posts: 347 Member
    I'm so glad to find this board
    Just 2 days ago my 25-year-old sister was diagnosed with Anaplastic Astrocytoma. One of her tumors was removed at MD Anderson by Dr. Sawaya. She recovered nicely from the surgery but we were devastated when the pathology report came back with this diagnosis. I've been reading so much grim news on the internet, and this is the first positive thing I've found.

    Thank you all for sharing your stories, this will help my family and me as we begin this journey.
  • OCMenno
    OCMenno Member Posts: 26

    I'm so glad to find this board
    Just 2 days ago my 25-year-old sister was diagnosed with Anaplastic Astrocytoma. One of her tumors was removed at MD Anderson by Dr. Sawaya. She recovered nicely from the surgery but we were devastated when the pathology report came back with this diagnosis. I've been reading so much grim news on the internet, and this is the first positive thing I've found.

    Thank you all for sharing your stories, this will help my family and me as we begin this journey.

    I agree
    PBJ Austin,
    Good for you for being so active and finding this board so soon. I wish I had found it 3 years ago. I waited too long before I started looking for positive stories of hope and survival. The first thing I found on the internet after my wife was diagnosed in 2006 was all about the statistics (most of them far out-dated). I couldn't help but think, "she's going to die...soon, the rest of her time here will be miserable, our children will no longer have a mother, I will grow old alone, etc.". Yes, it is true that this is a horrible, deadly disease, and many lives are cut short, but it is wonderful to see that there are so many people surviving many years and encouragin one another. I thank God for that. We can all learn from each other here. There are times that are almost unbearable, and there are other times that everything is just great. I know it's easier for me to say than most of you, since I do not have the cancer myself, but I just like you to know that I share these things with my wife, who can't read, and it truly does strengthen her to hear about this hope. We also have a strong faith and a lot of support from friends, family, church, even my co-workers and bosses, and all of you.

    Thanks
  • PBJ Austin
    PBJ Austin Member Posts: 347 Member
    Thank you all
    OCMenno, thank you for your kind words and of course I will pray for your wife as well as all other cancer patients. The picture of you and your wife is lovely.

    I sent my Dad a link to this board so he could pass it along to my sister. Dad and other family members were very glad to get the positive info you all have provided.

    My sister is very upbeat and positive so I think she can beat this monster. The battle begins on Monday with her first radiation treatment at MD Anderson.

    Hugs to all of you.
  • romulolima
    romulolima Member Posts: 3
    Hi Janet
    I was diagnosed last summer with an anaplastic astrocytoma, Grade 3. How is your nephew-in-law doing? I am married and have a 4 year-old daughter and my wife is expecting our second girl.
    Please respond.

    Thank you,

    Romulo Lima
  • vetticus
    vetticus Member Posts: 1

    Hi Janet
    I was diagnosed last summer with an anaplastic astrocytoma, Grade 3. How is your nephew-in-law doing? I am married and have a 4 year-old daughter and my wife is expecting our second girl.
    Please respond.

    Thank you,

    Romulo Lima

    Hi
    Hi everyone,

    It was nice to see your messages here. I too was diagnosed with this (an Anaplastic Astrocytoma grade III) last month and have good and bad days in terms of keeping my spirits up. I had surgery mid-March and am due to start my radiotherapy today. Your notes have given me some strength. Look forward to chatting more.

    Thanks
    Yvette
  • elad84
    elad84 Member Posts: 1
    ronefx said:

    I had a grade 3 astrocytoma
    I had a grade 3 astrocytoma tumor removed feb 1993 at Herman Hospital in Houston, TX. I had 6 weeks of radiation and a year of chemotherapy at MD Anderson after the surgery. I was 18 then and am 34 now, just had a M.R.I. and everything still looks good. I trust and know the Lord had his healing hand involved. I found this site, looking for a website that has some survivors after effects, if that makes sense. I feel tired often and unmotivated. I also have other problems that doctors can't seem to find an answer to, so if anyone knows of a website please post it here, thanks.

    thank you for givin us hope
    i would like to know , if you don't mind .
    are you able to work and do every thing you pleased?