Anaplastic Astrocytoma grade 3

sasnspice

My sisters husband was diagnosed a couple of days ago with Anaplastic Astrocytoma grade 3, The doctors told him they are going to go in the week after thanksgiving and remove all they can, then on to radiation and chemo. I am so scared for him and I am hoping that it goes well and we can help him beat this.
I am wondering how others handle it? Chemo, surgery, radiation? and what is the success rate? He is so young, only 33 with a teenage boy and of course a wife (my sister). They have been together since they were in Junior High, he has been part of our family for over 20 years. The whole thing is keeping me up at night because I worry so much about just getting him better so we can put this in the past.
One thing I am wondering, if we do get rid of it, what are the chances it will come back? Is:)

PBJ Austin

Welcome to our community
I am sorry for what you and your family are going through. I know all too well how hard it is to have a young family member diagnosed with AA3. If you scroll down you will find many inspiring stories from people who have fought this monster. I have told my sister's story many times on this board but I am happy to re-tell it just for you.

In March 2009 my then 25-year-old sister was diagnosed with AA3. We were told it was too late to cure it and the chemo and radiation would only prolong her life. We were also told there would be no remission.

My kid sister is one of those people who has never done anything she was supposed to do and this was no exception. She defied the doctors and within a year she went into remission. She has now been in remission for over a year and a half and all of her MRI's keep coming back clear, in other words, no signs of cancer.

The following will be different for everyone but here is how she handled treatment. The surgery wasn't too bad for her and she was only in the hospital for 2 nights. Radiation was tough, she said it sucked the life out of her and she had no energy. She lost a big patch of hair. Some has grown back but her hair is still very thin on that side. She took Temador as her chemo treatment and she said it wasn't bad at all. No further hair loss occurred from chemo.

You asked about the success rate. I don't think you should pay too much attention to stats because stats do not apply to individual people. When my sister's diagnosis first came I googled like crazy and nearly drove myself crazy, thinking by 2011 she would either be gone or on the way out. All that was a waste of my time and energy, because here we are in 2011 and she is fine. That's not to say the cancer will never return, that is not a guarantee. But is life a guarantee for anyone? In that regard cancer patients are no different from the rest of us, as none of us can know what tomorrow holds.

I wish you and your family the very best, you and everyone on this board are in my prayers.

PS: I would like to say hi to my beloved friend momsworld who will surely join this thread soon. She has a good story to tell about her little girl.

Pam

momsworld

PBJ Austin said:

Welcome to our community
I am sorry for what you and your family are going through. I know all too well how hard it is to have a young family member diagnosed with AA3. If you scroll down you will find many inspiring stories from people who have fought this monster. I have told my sister's story many times on this board but I am happy to re-tell it just for you.

In March 2009 my then 25-year-old sister was diagnosed with AA3. We were told it was too late to cure it and the chemo and radiation would only prolong her life. We were also told there would be no remission.

My kid sister is one of those people who has never done anything she was supposed to do and this was no exception. She defied the doctors and within a year she went into remission. She has now been in remission for over a year and a half and all of her MRI's keep coming back clear, in other words, no signs of cancer.

The following will be different for everyone but here is how she handled treatment. The surgery wasn't too bad for her and she was only in the hospital for 2 nights. Radiation was tough, she said it sucked the life out of her and she had no energy. She lost a big patch of hair. Some has grown back but her hair is still very thin on that side. She took Temador as her chemo treatment and she said it wasn't bad at all. No further hair loss occurred from chemo.

You asked about the success rate. I don't think you should pay too much attention to stats because stats do not apply to individual people. When my sister's diagnosis first came I googled like crazy and nearly drove myself crazy, thinking by 2011 she would either be gone or on the way out. All that was a waste of my time and energy, because here we are in 2011 and she is fine. That's not to say the cancer will never return, that is not a guarantee. But is life a guarantee for anyone? In that regard cancer patients are no different from the rest of us, as none of us can know what tomorrow holds.

I wish you and your family the very best, you and everyone on this board are in my prayers.

PS: I would like to say hi to my beloved friend momsworld who will surely join this thread soon. She has a good story to tell about her little girl.

Pam

HI PBJ Austin
you know me to well, lol. Unfortunetly my daughter just had her 1st set back. 3 months ago we took her off of the Avastin because of 4 clear MRI's. Friday nov 11, her MRI came back with new tumor growth. The tumor is located in the cerrebellum again and is about the size of a large gumball. The tumor also has a cyst on it which is putting pressure on her brain causing some swelling. She is scheduled for surgery on nov 22. I feel like we are right back where we started march 27 2010. My daughter will spend her 14th bday in the hospital. poor girl. I don't know how much more she can handle. please keep her in all of your prayers. I will update again soon.

sorry Pam, we were on a roll and now, well......

connsteele

momsworld said:

HI PBJ Austin
you know me to well, lol. Unfortunetly my daughter just had her 1st set back. 3 months ago we took her off of the Avastin because of 4 clear MRI's. Friday nov 11, her MRI came back with new tumor growth. The tumor is located in the cerrebellum again and is about the size of a large gumball. The tumor also has a cyst on it which is putting pressure on her brain causing some swelling. She is scheduled for surgery on nov 22. I feel like we are right back where we started march 27 2010. My daughter will spend her 14th bday in the hospital. poor girl. I don't know how much more she can handle. please keep her in all of your prayers. I will update again soon.

sorry Pam, we were on a roll and now, well......

So sorry to hear about your daughter's setback
I am so sorry to hear about your daughter's setback. Our son (age 34) has AA3 too. He had is crainiotmony on 4/13/11. Could only debulk the main tumor, leaving several other smaller ones. After radiation/28 day Temodar, he is now on the 5/28 cycle. So far, he is stable. I have been following your posts and can relate to your daughter wanting to live a normal life. Our son has had to deal with giving up his independence to move back home with us as he has some deficits caused by the tumor's location in the cerebellum.

I am so sorry that your daughter's birthday will be in the hospital. My thoughts and prayers are with you and your daughter.

PBJ Austin

momsworld said:

HI PBJ Austin
you know me to well, lol. Unfortunetly my daughter just had her 1st set back. 3 months ago we took her off of the Avastin because of 4 clear MRI's. Friday nov 11, her MRI came back with new tumor growth. The tumor is located in the cerrebellum again and is about the size of a large gumball. The tumor also has a cyst on it which is putting pressure on her brain causing some swelling. She is scheduled for surgery on nov 22. I feel like we are right back where we started march 27 2010. My daughter will spend her 14th bday in the hospital. poor girl. I don't know how much more she can handle. please keep her in all of your prayers. I will update again soon.

sorry Pam, we were on a roll and now, well......

So sorry momsworld
Geez momworld, I am so sorry to hear this news. I have often feared my sister's cancer will return and I'm sure I would also feel like it is all starting over again.

But let's look a couple of silver linings to this cloud: It is operable and we both know that is very important. Hopefully they can get all of it and minimal treatment will follow. I am also glad she had the MRI on schedule so they found this problem before it got worse. Birthdays are so much fun at that age and I wish she could be home having a party, but maybe you can sneak in a cake and some cool gifts for her.

I will definitely send good vibes your way on November 22 and please give her an extra birthday hug from her unseen friend in Texas.

Pam

momsworld

PBJ Austin said:

So sorry momsworld
Geez momworld, I am so sorry to hear this news. I have often feared my sister's cancer will return and I'm sure I would also feel like it is all starting over again.

But let's look a couple of silver linings to this cloud: It is operable and we both know that is very important. Hopefully they can get all of it and minimal treatment will follow. I am also glad she had the MRI on schedule so they found this problem before it got worse. Birthdays are so much fun at that age and I wish she could be home having a party, but maybe you can sneak in a cake and some cool gifts for her.

I will definitely send good vibes your way on November 22 and please give her an extra birthday hug from her unseen friend in Texas.

Pam

Thanks PBJ Austin
Yes, you are so right, one good part is that they can remove it and she is young and can bounce back pretty quickly. Tomorrow she will have her pre-op and and then we will try to have a nice weekend before Tuesday. I will keep you posted on how everything goes.

cindysuetoyou

momsworld said:

Thanks PBJ Austin
Yes, you are so right, one good part is that they can remove it and she is young and can bounce back pretty quickly. Tomorrow she will have her pre-op and and then we will try to have a nice weekend before Tuesday. I will keep you posted on how everything goes.

I'm sorry
Hi, Momsworld.

I hated to hear that your daughter had a setback. I will be praying that the next course of action will work really well and you and your little girl can beat the cancer back again. You and PBJ are right....it's a blessing that she can have surgery. David also had another surgery and he actually recovered faster from the second one than he did with the first one. They couldn't remove all the tumor this time but they were able to reduce the "mass effect" and that in turn reduced the swelling. Our kids have youth in their favor too...they recover a lot faster.

Could you do a special birthday celebration the weekend before her surgery? It sucks to be in the hospital for a birthday but hopefully you can do some things to make it a little better...maybe some special friends can come visit and watch a movie with her? I don't know....I try to do things to make David's stay a little better. I took some pictures of David and our family and of good times and I had them enlarged and I bought special reusable double-sided tape and I made a collage on David's hospital room's wall with all the pictures. It was a simple thing to do and it really was a morale booster.

I think of you often, and also of so many others on this site, and I will continue to pray for you and for your daughter.

Love and blessings, strength and peace to you,
Cindy in Salem, OR

sadinholland

cindysuetoyou said:

I'm sorry
Hi, Momsworld.

I hated to hear that your daughter had a setback. I will be praying that the next course of action will work really well and you and your little girl can beat the cancer back again. You and PBJ are right....it's a blessing that she can have surgery. David also had another surgery and he actually recovered faster from the second one than he did with the first one. They couldn't remove all the tumor this time but they were able to reduce the "mass effect" and that in turn reduced the swelling. Our kids have youth in their favor too...they recover a lot faster.

Could you do a special birthday celebration the weekend before her surgery? It sucks to be in the hospital for a birthday but hopefully you can do some things to make it a little better...maybe some special friends can come visit and watch a movie with her? I don't know....I try to do things to make David's stay a little better. I took some pictures of David and our family and of good times and I had them enlarged and I bought special reusable double-sided tape and I made a collage on David's hospital room's wall with all the pictures. It was a simple thing to do and it really was a morale booster.

I think of you often, and also of so many others on this site, and I will continue to pray for you and for your daughter.

Love and blessings, strength and peace to you,
Cindy in Salem, OR

Momsworld,
I am so sorry to read that your daughter has another tumor. It breaks my heart. It also breaks my heart that she is going to be in the hospital on her birthday. Perhaps I could send her a card to the hospital? Although she doesn't know me, maybe it would make her feel better to know that people all over are pulling and praying for her recovery. You don't have to give me any information about her, I could just have something sent to the hospital using "Momsworld" so you don't have to give any of your private info out. You let them know you are expecting something with that title for your daughter. I will have something sent right away!! I just need to know what hospital and the best day to have it delivered. I have children myself and I can only imagine how you must feel. God Bless!

If you would rather me not, I will not be offended. That's ok too!

ThomasVanVoorhis

momsworld said:

HI PBJ Austin
you know me to well, lol. Unfortunetly my daughter just had her 1st set back. 3 months ago we took her off of the Avastin because of 4 clear MRI's. Friday nov 11, her MRI came back with new tumor growth. The tumor is located in the cerrebellum again and is about the size of a large gumball. The tumor also has a cyst on it which is putting pressure on her brain causing some swelling. She is scheduled for surgery on nov 22. I feel like we are right back where we started march 27 2010. My daughter will spend her 14th bday in the hospital. poor girl. I don't know how much more she can handle. please keep her in all of your prayers. I will update again soon.

sorry Pam, we were on a roll and now, well......

HI
I am soooo sorry to hear this, I had such high hopes. Man, all I can do is pray, I'm sure y'all have been doing a lot of that. My mom will also be having surgery on the 22nd, she has, I can't remember the technical name, cancer on her pallet. They are going to have to do some very horrible things that i just hate to think about.
Well you give that little angel a big hug for me. Y'all are in my prayers.


Sincerely

Thomas

alutiiqmom

momsworld said:

HI PBJ Austin
you know me to well, lol. Unfortunetly my daughter just had her 1st set back. 3 months ago we took her off of the Avastin because of 4 clear MRI's. Friday nov 11, her MRI came back with new tumor growth. The tumor is located in the cerrebellum again and is about the size of a large gumball. The tumor also has a cyst on it which is putting pressure on her brain causing some swelling. She is scheduled for surgery on nov 22. I feel like we are right back where we started march 27 2010. My daughter will spend her 14th bday in the hospital. poor girl. I don't know how much more she can handle. please keep her in all of your prayers. I will update again soon.

sorry Pam, we were on a roll and now, well......

I am Sorry!
Hi Momsworld-

I am very sorry to hear about your daughter's troubles. I agree with PBJ that thankfully you caught it when they did and she is young. We have heard numerous times that the fact that our daughters are young will really help them fight and heal from this diease. I think you should do something special for her. Hide little treasures and notes in her room. Get her a yummy cake. We will send good vibes, prayers and blessings all the way from Alaska. We continue to pray for your daughter's healing and for your perservance during this most difficult time. I am reading a really comforting and inspiring book called: "Stronger" written by Jim Daly. I will be thinking of you and your daughter. God Bless you and your daughter.
Edna

momsworld

alutiiqmom said:

I am Sorry!
Hi Momsworld-

I am very sorry to hear about your daughter's troubles. I agree with PBJ that thankfully you caught it when they did and she is young. We have heard numerous times that the fact that our daughters are young will really help them fight and heal from this diease. I think you should do something special for her. Hide little treasures and notes in her room. Get her a yummy cake. We will send good vibes, prayers and blessings all the way from Alaska. We continue to pray for your daughter's healing and for your perservance during this most difficult time. I am reading a really comforting and inspiring book called: "Stronger" written by Jim Daly. I will be thinking of you and your daughter. God Bless you and your daughter.
Edna

THANK YOU
I don't know where I would be without this site. You are all so awesome. I do have a supportive family and all but I always feel alone. That I cannot let my true feelings out, but here, you really, truely understand. This will be #5 as far as her brain surgeries go and I do not know how much more she can handle. She has been very depressed this time. I do not blame her, I am depressed too. My heart is aching so badly for her that she has to go through this again. I am also struggling with, when is it enough?, how much more should I put her through? How can I make a decision like that?
So on a different note, her surgery is Tues Nov 22 at the Bostons childrens hospital. The surgeron has an awesome reputation, but is not the warmest person we have met. She is very hopeful of getting the tumor and the cyst. She feels that my daughter will not have anymore motor skill deficits than she does now. Now we wait and we pray for a successful surgery and that God be with her nov 22.

momsworld

sadinholland said:

Momsworld,
I am so sorry to read that your daughter has another tumor. It breaks my heart. It also breaks my heart that she is going to be in the hospital on her birthday. Perhaps I could send her a card to the hospital? Although she doesn't know me, maybe it would make her feel better to know that people all over are pulling and praying for her recovery. You don't have to give me any information about her, I could just have something sent to the hospital using "Momsworld" so you don't have to give any of your private info out. You let them know you are expecting something with that title for your daughter. I will have something sent right away!! I just need to know what hospital and the best day to have it delivered. I have children myself and I can only imagine how you must feel. God Bless!

If you would rather me not, I will not be offended. That's ok too!

You are very sweet
Hi sadinholland,
I think my daughter would be surprised but happy to get a card from you. I think I can send you a msg on this site. I will play around with it and see. I will send you the info you need to send a card. Again, you are very sweet

connsteele

momsworld said:

THANK YOU
I don't know where I would be without this site. You are all so awesome. I do have a supportive family and all but I always feel alone. That I cannot let my true feelings out, but here, you really, truely understand. This will be #5 as far as her brain surgeries go and I do not know how much more she can handle. She has been very depressed this time. I do not blame her, I am depressed too. My heart is aching so badly for her that she has to go through this again. I am also struggling with, when is it enough?, how much more should I put her through? How can I make a decision like that?
So on a different note, her surgery is Tues Nov 22 at the Bostons childrens hospital. The surgeron has an awesome reputation, but is not the warmest person we have met. She is very hopeful of getting the tumor and the cyst. She feels that my daughter will not have anymore motor skill deficits than she does now. Now we wait and we pray for a successful surgery and that God be with her nov 22.

I know what you're feeling
I know what you're feeling re: the deep ache you feel in your heart for your child and what she is going through. I wake up with it every morning. Feels like a heavy weight on my chest. Like me, I'm sure that you would give anything if you could be the one going through this.
She is fortunate to have such a supportive and caring mom. I'm sure your love is what gives her hope and helps get her through these hard times.

Will be thinking and praying for you on the 22nd.

cindysuetoyou

momsworld said:

THANK YOU
I don't know where I would be without this site. You are all so awesome. I do have a supportive family and all but I always feel alone. That I cannot let my true feelings out, but here, you really, truely understand. This will be #5 as far as her brain surgeries go and I do not know how much more she can handle. She has been very depressed this time. I do not blame her, I am depressed too. My heart is aching so badly for her that she has to go through this again. I am also struggling with, when is it enough?, how much more should I put her through? How can I make a decision like that?
So on a different note, her surgery is Tues Nov 22 at the Bostons childrens hospital. The surgeron has an awesome reputation, but is not the warmest person we have met. She is very hopeful of getting the tumor and the cyst. She feels that my daughter will not have anymore motor skill deficits than she does now. Now we wait and we pray for a successful surgery and that God be with her nov 22.

Thinking of you and praying
Hi, Momsworld.

I am praying especially hard tonight for your little girl. It breaks my heart to read that this is surgery #5 for her, and that she's very depressed. It's so wrong for a 14 year old to have to face something like this. And for you as a mom....I understand your pain.

I wish I had some great words of wisdom that would really help you, but all I can think of to say....is that we really don't have a choice. We have to go through this, and we have to stay strong for our kids. What else can we do? Sometimes I feel totally overwhelmed, and in the middle of the night when I can't sleep and I lie in bed with tears running out of my eyes and making puddles on my pillows, I cry out to God, out loud, and I say, "God, help me! Help me!" I am so desperate. And even in the middle of my torment and anguish, God is always so faithful and He always brings a measure of peace to my soul.

I have noticed that David's battle with cancer has been a crazy emotional roller coaster ride. His situation can seem so bleak and hopeless, and then in a matter of days, things can turn around and our hope is refreshed. I hope that this happens for you too....that after your daughter's surgery, she will recover quickly and be able to beat the cancer back and be tumor free again. That's my hope and my prayer for your daughter. And for peace and strength for both of you.

I will be thinking and praying for both of you all day tomorrow.

Love, blessings, strength, peace and healing to you and your daughter.
Cindy in Salem, OR

alutiiqmom

momsworld said:

THANK YOU
I don't know where I would be without this site. You are all so awesome. I do have a supportive family and all but I always feel alone. That I cannot let my true feelings out, but here, you really, truely understand. This will be #5 as far as her brain surgeries go and I do not know how much more she can handle. She has been very depressed this time. I do not blame her, I am depressed too. My heart is aching so badly for her that she has to go through this again. I am also struggling with, when is it enough?, how much more should I put her through? How can I make a decision like that?
So on a different note, her surgery is Tues Nov 22 at the Bostons childrens hospital. The surgeron has an awesome reputation, but is not the warmest person we have met. She is very hopeful of getting the tumor and the cyst. She feels that my daughter will not have anymore motor skill deficits than she does now. Now we wait and we pray for a successful surgery and that God be with her nov 22.

prayers for you
Hi Momsworld:

I have been thinking of you this week, wondering how you and a your daughter are doing. We have been saying for your daughter at night and we will continue to pray for her and you as well. We pray for a speedy recovery and for the guidance of the doctors and nurses. We will also pray for your strength and hope.
I agree with what the other Mom wrote, in the darkest hours God is there. He will never leave you. This is a rollercoaster ride and at different times it feels so out of control. I pray that you will have peace and hope once again.
During this whole journey of Sarah's I have also said and thought if God can give Sarah to us, he can stop that cancer from growing. I found this verse that I like:
"As you do not know the path of the wind, or how the body is formed in a mother's womb, so you cannot understnad the work of God, the Maker of all things. (Eccl. 11:5)
"I am leaving you with a gift - peace of mind and heart. And the peace I give isn't like the peace the world gives. So don't be troubled or afraid." John 14:27

"He spoke the word that healed you, that pulled you back from the brink of death. So thank God for his marvelous love, for his miracle mercy to the children he loves." Psalm 107:20-21
Thinking of you all week. God bless you all.

Edna

chicken2799

momsworld said:

THANK YOU
I don't know where I would be without this site. You are all so awesome. I do have a supportive family and all but I always feel alone. That I cannot let my true feelings out, but here, you really, truely understand. This will be #5 as far as her brain surgeries go and I do not know how much more she can handle. She has been very depressed this time. I do not blame her, I am depressed too. My heart is aching so badly for her that she has to go through this again. I am also struggling with, when is it enough?, how much more should I put her through? How can I make a decision like that?
So on a different note, her surgery is Tues Nov 22 at the Bostons childrens hospital. The surgeron has an awesome reputation, but is not the warmest person we have met. She is very hopeful of getting the tumor and the cyst. She feels that my daughter will not have anymore motor skill deficits than she does now. Now we wait and we pray for a successful surgery and that God be with her nov 22.

Surgery
I have been following your story on here the last couple of weeks, and wanted to let you know that you and your precious daughter is in my prayers. I cannot imagine going through this with my daughter although when she was two weeks old we almost lost her to meningitis. I myself have AA3 and I know that it is hard on my family just as it is hard on you. I wish there was something I could say to make you feel better, but know that you are a very precious Mother! I am on the other side of the fence as you because everyday I worry about my 4 year old daughter not having me here to take care of her. It does not seem fair for either me or you, but I truly have faith the God has a plan for your daughter and I. Let her know that I am praying for her and that I hope she has a Wonderful Birthday!