Any survivors of inoperable Anaplastic Astrocytom Grade III?

Diablita
Diablita Member Posts: 18
edited March 2014 in Brain Cancer #1
My Anaplastic Astrocytoma Grade III cannot be resected due to the location where it is, that makes me very depressed but the Drs here say they treat those tumors with Chemo and Radiation and people can live many years like that ( 5 + ) Still, Im scared and pass all day thinking and praying that my tumor could be resected and I could have better chances of survival, Im going crazy here, I want to be here with my little children and my husband, but I don't even know what the future holds for me, and it is so scary, all I wish is for me to get better and go to my normal life and be healthy again. I will always hope for a cure for my tumor and better treatments, I don't want to go anytime soon, my children and husband need me.

Comments

  • PBJ Austin
    PBJ Austin Member Posts: 347 Member
    #2
    You should seek a second opinion
    When my sister's tumors were first found they told her they were inoperable. She sought a second opinion with Dr. Sawaya at MD Anderson hospital and he said the larger one was indeed operable. She had the surgery and went into treatment and within a year the cancer was no longer visible. That doesn't mean it's gone forever but for now she's not in treatment because her MRI's are clear.

    I don't know where you live but is there any chance you can get to MD Anderson in Houston? If not then you should get another opinion from a hospital like MD Anderson that specializes in brain tumors.

    Best of luck to you.
  • sue Siwek
    sue Siwek Member Posts: 279
    #3
    my husband is a 10 +year
    my husband is a 10 +year survivor of a aa 111. that was inoperable. he went to a teaching and research hospital and i am convinced that he survived because of it. it is not easy, none of us can know the future. you need to try your hardest to live for your loved ones. be assertive and when you are too tired have your husband, sister, brother, mother or father assert for you. you can do this because you have so much to live for. my husband has managed to meet 5 grandchildren and he is glad to be here.
  • KMPonder
    KMPonder Member Posts: 102
    #4
    sue Siwek said:

    my husband is a 10 +year
    my husband is a 10 +year survivor of a aa 111. that was inoperable. he went to a teaching and research hospital and i am convinced that he survived because of it. it is not easy, none of us can know the future. you need to try your hardest to live for your loved ones. be assertive and when you are too tired have your husband, sister, brother, mother or father assert for you. you can do this because you have so much to live for. my husband has managed to meet 5 grandchildren and he is glad to be here.

    Hubby's AAs were diagnosed
    Hubby's AAs were diagnosed August 2009. (His first brain tumor was diagnosed in 1987, but it was a mixed germ cell tumor (inoperable as well). That was gone by 1987! These AAs (radiation induced) are also inoperable (three in all). He's living well after radiation/chemo. He continues monthly Temodar, which he tolerates extremely well. People are amazed at how well he's doing.

    He returned to teaching in January after all the initial treatments at Duke, and I would say his quality of life right now is very good! Mind you he's ready for summer break which starts next week! Fishing, the beach and another MRI at Duke are all on the June agenda. :)

    Try your best to get caught up in doctors' statistics. Sue can attest that they really cannot apply to us as individuals when we are facing this. I am expecting my husband to beat this as he did the tumor of '87. His will to live and keep as normal a life is proving strong nine months after diagnosis. You have much to live for, too, so find the best treatment center you can and live in this day - today. Focusing on the short-term needs for him (5-day Temodar, next MRI) are so much easier than worrying about what may come next year.

    I wish you peace and healing, which I believe is possible! Please let us know how you are doing.
  • Diablita
    Diablita Member Posts: 18
    #5
    KMPonder said:

    Hubby's AAs were diagnosed
    Hubby's AAs were diagnosed August 2009. (His first brain tumor was diagnosed in 1987, but it was a mixed germ cell tumor (inoperable as well). That was gone by 1987! These AAs (radiation induced) are also inoperable (three in all). He's living well after radiation/chemo. He continues monthly Temodar, which he tolerates extremely well. People are amazed at how well he's doing.

    He returned to teaching in January after all the initial treatments at Duke, and I would say his quality of life right now is very good! Mind you he's ready for summer break which starts next week! Fishing, the beach and another MRI at Duke are all on the June agenda. :)

    Try your best to get caught up in doctors' statistics. Sue can attest that they really cannot apply to us as individuals when we are facing this. I am expecting my husband to beat this as he did the tumor of '87. His will to live and keep as normal a life is proving strong nine months after diagnosis. You have much to live for, too, so find the best treatment center you can and live in this day - today. Focusing on the short-term needs for him (5-day Temodar, next MRI) are so much easier than worrying about what may come next year.

    I wish you peace and healing, which I believe is possible! Please let us know how you are doing.

    Thank You!
    Thank You! I'm trying to fight this disease and be as positive as I can, I have little children ( Girl 4 & Boy 2 ) so as you can see I have so much to live for, I cannot leave any time now, my little children need me.
  • OCMenno
    OCMenno Member Posts: 26
    #6
    Diablita said:

    Thank You!
    Thank You! I'm trying to fight this disease and be as positive as I can, I have little children ( Girl 4 & Boy 2 ) so as you can see I have so much to live for, I cannot leave any time now, my little children need me.

    You are not alone
    You are not alone Diablita. My wife is 31 years old, diagnosed with AA Grade 3 when she was 26, it has now transformed to inoperable GBM. She cannot read or write but I can speak for her. We have 3 little children (Girl 10, boy 9, and girl 4). Our 4 year old was 1 month old when my wife was diagnosed. She feels exactly the same way, she can't bear the thought of not being here to watch them grow up. She fears that they will forget her if she leaves this earth. There are many times where I just don't know what to say anymore to chear her up. For the most part though she is handling it very well, thanks to her faith in Jesus Christ. She is not afraid of where she will be when this life is over, but the pain of the thought of leaving her family at such a young age is still there. I am so proud of her for staying so strong.
  • Diablita
    Diablita Member Posts: 18
    #7
    OCMenno said:

    You are not alone
    You are not alone Diablita. My wife is 31 years old, diagnosed with AA Grade 3 when she was 26, it has now transformed to inoperable GBM. She cannot read or write but I can speak for her. We have 3 little children (Girl 10, boy 9, and girl 4). Our 4 year old was 1 month old when my wife was diagnosed. She feels exactly the same way, she can't bear the thought of not being here to watch them grow up. She fears that they will forget her if she leaves this earth. There are many times where I just don't know what to say anymore to chear her up. For the most part though she is handling it very well, thanks to her faith in Jesus Christ. She is not afraid of where she will be when this life is over, but the pain of the thought of leaving her family at such a young age is still there. I am so proud of her for staying so strong.

    I'm sorry
    Hi OCMenno! I'm so sorry about your wife! I can certainly tell you how much I feel that pain, I'm scared I wont be here to see my children grow up and take care of them. Since my tumor is inoperable my only hopes will be on the Radiation and Chemotherapy treatments my Doctors offer, they have told me their treatments work pretty good with the other patients they have, so I hope they can work good with me.

    Also, I'm trying to stay strong for my children ( I have 2 little ones: Boy 2 and Girl 4 and also have 2 Stepchildren: Girl 15 and Boy 12 ) this is not easy, and sometimes I get very depressed because of this situation, but what else can I do? Just pray and keep on praying, my faith in GOD is what is keeping me here and I know that's will help me survive this disease.

    I will pray for your wife too that she can fight and beat this disease too.
  • momsworld
    momsworld Member Posts: 135
    #8
    Hi, My 12 year old daughter
    Hi, My 12 year old daughter was diagnosed with anaplastic astrocytoma 3 in March 2010 and she has had 2 brain surgeries to remove the tumor. The doctors told us that they feel that they removed it all. The doctors also told us the same thing as you, with radiation and oral chemo she has a chance at 5 years. This is devastating, but everyday there are new treatments for cancer and I hope that there will be one found for brain tumors. You never realize how many people get these until you are in this situation. I have done alot of research and I heard that at MD Anderson hosp they use accutane along with temador and radiation to treat this type of tumor. Unfortunetly it was not tested with children so our doctors are not comfortable using this method for my daughter but since your older than her maybe you can suggest this to your doctor. Good Luck and my prayers are with you.
  • Diablita
    Diablita Member Posts: 18
    #9
    momsworld said:

    Hi, My 12 year old daughter
    Hi, My 12 year old daughter was diagnosed with anaplastic astrocytoma 3 in March 2010 and she has had 2 brain surgeries to remove the tumor. The doctors told us that they feel that they removed it all. The doctors also told us the same thing as you, with radiation and oral chemo she has a chance at 5 years. This is devastating, but everyday there are new treatments for cancer and I hope that there will be one found for brain tumors. You never realize how many people get these until you are in this situation. I have done alot of research and I heard that at MD Anderson hosp they use accutane along with temador and radiation to treat this type of tumor. Unfortunetly it was not tested with children so our doctors are not comfortable using this method for my daughter but since your older than her maybe you can suggest this to your doctor. Good Luck and my prayers are with you.

    Thanks
    I will have my second surgery sometime this month ( if it is true that the doctors really can operate my tumor ) and see where we go from there, my doctors say that the treatment they offer for my type of tumor is very effective, and should leave me tumor free for a few years, so we'll see, they say that as long as the tumor doesn't come back I shouldn't worry, I'm getting very hopeful about it and will give it a try, I have all my faith in GOD and believe he can make me the miracle and save my life and I can be able to stay here for many years until the scientists find the cure ( they are so close already, they will find it pretty soon ) I believe I will see the cure for my tumor in my lifetime and will be cured someday.

    I'm planning on going to MD Anderson sometime next month, and sure I will ask them about the method you are talking about and see what they tell me. Thank You very much for your suggestion, and I will be praying for you and your daughter.
  • prajwal
    prajwal Member Posts: 2
    #10
    hi iam 26years old just married

    hello Diablita how are you doing i have diagnosed with AA III last month iam prety nervos doctor has told two years of survival how to find a proper treatment to cure this , i wanna enjoy my married life i wanna see my kids plse guide me . prajwal.rajith@gmail.com you can revert on this mail id 

  • Adsmith360
    Adsmith360 Member Posts: 1
    #11
    sue Siwek said:

    my husband is a 10 +year
    my husband is a 10 +year survivor of a aa 111. that was inoperable. he went to a teaching and research hospital and i am convinced that he survived because of it. it is not easy, none of us can know the future. you need to try your hardest to live for your loved ones. be assertive and when you are too tired have your husband, sister, brother, mother or father assert for you. you can do this because you have so much to live for. my husband has managed to meet 5 grandchildren and he is glad to be here.

    My husband was diagnosed with

    My husband was diagnosed with AA3 this year.  His tumor was completely removed & he is now in the middle of treatment.  I just found your post & you have given me hope that he will be here to watch our baby grow up.  May I ask how your husband is doing?  please share any advice you may have on how to make this process easier on him and for how he was able to do so well after treatment.  Thank you for sharing. 

  • New Delhi
    New Delhi Member Posts: 9
    #12
    APXA Gr III

    When I got the biopsy report of my wife and read for the frst time the words 'Anaplastic Pleomorphic Xanthoastrocytoma' I thought that it was not cancerous. She had a brain surgery to remove that 6x6x4 cms tumer from right perietal lobe. Actually we were in the hospital for treatment of her gynec problem. She stated showing weakness just a few weeks ago. Her left hand became weak and she was using it less. Slipper from left foot used to come out she was dragging left foot. MRI revealed tumer. Then we realised why she started leaving fans, lights of rooms on and doors of kitchen cabinet open. Even door of refrigerater was somtimes left open. She used to rub balm on right side of temple. Looked confused sometimes and showed irritation when we pointed this to her. 

    Anyway I was shoked to hear about presence tumer and couldnt believe  that this Anaplastic PXA (grade III) is a rare type of cancer. Dr prescribed 30 sessions of RT and 45 days of 120 mg Temozolomide. I came to know through internet that its rare and new type. Even results/effects of RT and chemo for its treatment are not fully established. But what could we do except to follow instructions of doctors. This week first round of treatment is over. Now one months rest. They will start Temozolomide again from next month. 

    She transformed completely after surgery and appeared normal. Tolerated RT and chemo well. But now after three days of the treatment she is feeling nausea and exausted. Started eating less for fear of vomit. Complains tastelessness. Hope this conditionwill improve soon.

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