antiplastic astrocytoma grade 3
Comments
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Hi there
I am sorry to hear about your diagnosis. My daughter has anaplastic astrocytoma 3 also, I am very suprised to hear that your doctors did not explain things to you. Did you have a biopsy of a tumor? surgery? My daughter had 4 surgeries to remove her tumor and it took several weeks for the results to come back. My daughters doctors explained it to her in a way she could understand, she was 12yr old then. They said that it is like an octopus, the tumor is the main body but it has little legs/arms (whatever you want to call them) that extend off of the body. this cancer, like with any other cancer does not always respond well to treatment. My daughter had the surgeries to remove the main tumor which was golfball size. She went through 35 radiation treatments and oral chemo. During this treatment however, the cancer was growing back. She did not respond well to it. I decided to get a 2nd opinion for treatment options. She had 2 more surgeries and went on a totally different treatment plan. She has been cancer free for almost 1 year now. You would be best to go to a place that either specializes in brain cancer or a place that treats brain cancer all the time. Depending on where you go is what type of treatments are available. The first hospital that we went to told us that there was nothing more they could do for my daughter. I did tons of research on treatment options and I found one using Avastin along with other medications, the first hospital told us it was still in clinical trial and it was being tried on adults not kids. The 2nd hospital and where we still are now, told us that it was out of clinical trial and IS being used on kids. My daughter went on a 5 drug regimen, Avastin being 1 of them and look where she is today. Sorry my post is so long, I just want to help as much as I can. When my daughter was first diagnosed I need all the advice I could get. Hang in there, stay strong and NEVER give up hope.
Tina 0 -
checking inmomsworld said:Hi there
I am sorry to hear about your diagnosis. My daughter has anaplastic astrocytoma 3 also, I am very suprised to hear that your doctors did not explain things to you. Did you have a biopsy of a tumor? surgery? My daughter had 4 surgeries to remove her tumor and it took several weeks for the results to come back. My daughters doctors explained it to her in a way she could understand, she was 12yr old then. They said that it is like an octopus, the tumor is the main body but it has little legs/arms (whatever you want to call them) that extend off of the body. this cancer, like with any other cancer does not always respond well to treatment. My daughter had the surgeries to remove the main tumor which was golfball size. She went through 35 radiation treatments and oral chemo. During this treatment however, the cancer was growing back. She did not respond well to it. I decided to get a 2nd opinion for treatment options. She had 2 more surgeries and went on a totally different treatment plan. She has been cancer free for almost 1 year now. You would be best to go to a place that either specializes in brain cancer or a place that treats brain cancer all the time. Depending on where you go is what type of treatments are available. The first hospital that we went to told us that there was nothing more they could do for my daughter. I did tons of research on treatment options and I found one using Avastin along with other medications, the first hospital told us it was still in clinical trial and it was being tried on adults not kids. The 2nd hospital and where we still are now, told us that it was out of clinical trial and IS being used on kids. My daughter went on a 5 drug regimen, Avastin being 1 of them and look where she is today. Sorry my post is so long, I just want to help as much as I can. When my daughter was first diagnosed I need all the advice I could get. Hang in there, stay strong and NEVER give up hope. Tina
HI Tina-
Amen your daughter is doing well. I am trying to contact you I put my email on a different blog, edna@camai.com. I was wanting to know more about your daughter's meds. You did a nice job of explaining the illness to Green. Never give up hope, just as you said! I am glad you are doing well.0 -
Hi alutiiqmomalutiiqmom said:checking in
HI Tina-
Amen your daughter is doing well. I am trying to contact you I put my email on a different blog, edna@camai.com. I was wanting to know more about your daughter's meds. You did a nice job of explaining the illness to Green. Never give up hope, just as you said! I am glad you are doing well.
thanks for the email address. I will email you and we can talk more0 -
anaplastic astrocytoma grade3
Hi, my name is Thomas and I was diagnosed with this in 2006, I was 36 years old at the time of my diagnosis. I had 65 chemo treatments, (temodar), and 35 radiation. I have been off of treatments now for about 3 years. I just had my annual MRI a couple months ago with NO signs of any new tumors. I had a craniotomy to remove the tumor, which we were told was inoperable. I went to see Dr. Jon Tew at the University Hospital in Cincinnati Ohio and he performed the surgery with fantastic results. My tumor was in the left frontal lobe of my brain along the motor strip. They were VERY concerned that I would lose mobility of my right leg, but not only did I not lose mobility of my right leg, I have absolutely NO side effects. I seem to tire a little sooner that i used to, but that is all. Everything that I had heard about this disease was horrible, especially grade 3, but I am alive and well and it is coming up on 5 years now. I am not to good at writing off the top of my head but, I can answer any questions you may have and would be happy to do so. Let me know if there is anything I can do for you.
Respectfully,
Thomas R. Van Voorhis0 -
Thank you so much forThomasVanVoorhis said:anaplastic astrocytoma grade3
Hi, my name is Thomas and I was diagnosed with this in 2006, I was 36 years old at the time of my diagnosis. I had 65 chemo treatments, (temodar), and 35 radiation. I have been off of treatments now for about 3 years. I just had my annual MRI a couple months ago with NO signs of any new tumors. I had a craniotomy to remove the tumor, which we were told was inoperable. I went to see Dr. Jon Tew at the University Hospital in Cincinnati Ohio and he performed the surgery with fantastic results. My tumor was in the left frontal lobe of my brain along the motor strip. They were VERY concerned that I would lose mobility of my right leg, but not only did I not lose mobility of my right leg, I have absolutely NO side effects. I seem to tire a little sooner that i used to, but that is all. Everything that I had heard about this disease was horrible, especially grade 3, but I am alive and well and it is coming up on 5 years now. I am not to good at writing off the top of my head but, I can answer any questions you may have and would be happy to do so. Let me know if there is anything I can do for you.
Respectfully,
Thomas R. Van Voorhis
Thank you so much for posting. Your story is sooo encouraging. Our son (age 34) was diagnosed with AA3 in April 2011 in his cerebellum. The surgeon was able to only debulk the tumor. He also had combo radiation/Temodar. He is now starting his third round of the 5/28 day Temodar. He has some deficits: uses a cane/walker and some minor deficits on his right side. He isn't driving as his reflexes are too slow and his speech is slightly affected.
One of the biggest challenges for him is losing his independence. He is single and was living in Washington DC area when this thing hit. We had to move him back home to live with us, as he is also a type 1 diabetic and can't handle his care for that along with not being able to drive. This has been really hard for him to accept, as he had to give up his apartment, driving, friends, job (he's on social security disability) and his schooling.
We live in the Dayton Ohio area. We go to The James at Ohio State.
When you said there are no signs of new tumors, does that mean even the original one is gone? Our son's last MRI showed a decrease in his primary tumor. Also, he had several small ones..about the size of grains of rice...on the right side of his cerebellum. The MRI revealed that they were pretty much gone.
His NO at Ohio State is real vague about the future and a prognosis, which is OK. We have started going to a brain tumor support group in Dayton. Do you live close by? Maybe we could get you guys together? You would be a great inspiration for him (and us)
If not, thanks again for letting us know your story. It helps to know others have gone on to beat this thing.0 -
Thank YouThomasVanVoorhis said:anaplastic astrocytoma grade3
Hi, my name is Thomas and I was diagnosed with this in 2006, I was 36 years old at the time of my diagnosis. I had 65 chemo treatments, (temodar), and 35 radiation. I have been off of treatments now for about 3 years. I just had my annual MRI a couple months ago with NO signs of any new tumors. I had a craniotomy to remove the tumor, which we were told was inoperable. I went to see Dr. Jon Tew at the University Hospital in Cincinnati Ohio and he performed the surgery with fantastic results. My tumor was in the left frontal lobe of my brain along the motor strip. They were VERY concerned that I would lose mobility of my right leg, but not only did I not lose mobility of my right leg, I have absolutely NO side effects. I seem to tire a little sooner that i used to, but that is all. Everything that I had heard about this disease was horrible, especially grade 3, but I am alive and well and it is coming up on 5 years now. I am not to good at writing off the top of my head but, I can answer any questions you may have and would be happy to do so. Let me know if there is anything I can do for you.
Respectfully,
Thomas R. Van Voorhis
Hi,
My 13 yr old daughter has AA3 and I have been feeling pretty down lately as her next MRI is coming up in a couple of weeks. Her last MRI was clear with no evidence of disease but, she has been off of her chemo meds (Avastin, etoposide and cyclophosphamide) for 3 months now and this will be the first MRI since she stopped. I am already a nervous wreck. Your post was just what I needed. Thanks.0 -
MRI anxietymomsworld said:Thank You
Hi,
My 13 yr old daughter has AA3 and I have been feeling pretty down lately as her next MRI is coming up in a couple of weeks. Her last MRI was clear with no evidence of disease but, she has been off of her chemo meds (Avastin, etoposide and cyclophosphamide) for 3 months now and this will be the first MRI since she stopped. I am already a nervous wreck. Your post was just what I needed. Thanks.
I remember well the anxiety that came with every impending MRI my husband had. I will keep your daughter in my prayers and hope all goes well.0 -
Hello againconnsteele said:Thank you so much for
Thank you so much for posting. Your story is sooo encouraging. Our son (age 34) was diagnosed with AA3 in April 2011 in his cerebellum. The surgeon was able to only debulk the tumor. He also had combo radiation/Temodar. He is now starting his third round of the 5/28 day Temodar. He has some deficits: uses a cane/walker and some minor deficits on his right side. He isn't driving as his reflexes are too slow and his speech is slightly affected.
One of the biggest challenges for him is losing his independence. He is single and was living in Washington DC area when this thing hit. We had to move him back home to live with us, as he is also a type 1 diabetic and can't handle his care for that along with not being able to drive. This has been really hard for him to accept, as he had to give up his apartment, driving, friends, job (he's on social security disability) and his schooling.
We live in the Dayton Ohio area. We go to The James at Ohio State.
When you said there are no signs of new tumors, does that mean even the original one is gone? Our son's last MRI showed a decrease in his primary tumor. Also, he had several small ones..about the size of grains of rice...on the right side of his cerebellum. The MRI revealed that they were pretty much gone.
His NO at Ohio State is real vague about the future and a prognosis, which is OK. We have started going to a brain tumor support group in Dayton. Do you live close by? Maybe we could get you guys together? You would be a great inspiration for him (and us)
If not, thanks again for letting us know your story. It helps to know others have gone on to beat this thing.
Sorry it has taken me so long to respond, but I thought if somebody replied I got a notification in my email, I guess not.
Ok, let's see, my tumor was surgically removed, so all that shows up on the MRI is the empty cavity, it was about the size of a gulf ball.
I too lost everything, which was so hard for me because I had been on my own for so long. I also had to move back in with my parents, which was a major adjustment not just for me, but for them as well. In my mother's eyes I was still her little boy, you know how that is lol, but I was far from a little boy. I went into the service when I was 18 and served almost 10 years. I did not move back to Ohio until I was 31. I am a combat veteran and a very independent person, it was very hard to LET people help me. Before my diagnoses I was an OTR truck driver, so it was very difficult for me when I was told I could no longer drive, this was temporary. When all this took place I was living in Sidney, Ohio, just a few miles up the road. I now live in Columbus, Ohio, which is still close by, so yes I would love to be an inspiration to him, anybody as far as that goes. Now, I am assuming that when you said he lost his friends, it's because he had to move back to Ohio? Well, keep in touch, my email is thomasvanvoorhis@yahoo.com so shoot me an email for a quicker response. Talk to you soon.
Thomas0 -
Your Welcomemomsworld said:Thank You
Hi,
My 13 yr old daughter has AA3 and I have been feeling pretty down lately as her next MRI is coming up in a couple of weeks. Her last MRI was clear with no evidence of disease but, she has been off of her chemo meds (Avastin, etoposide and cyclophosphamide) for 3 months now and this will be the first MRI since she stopped. I am already a nervous wreck. Your post was just what I needed. Thanks.
Seems like any time, especially around time for my annual, I have any issues with my health at all, I get MRI anxiety. I think this is normal and it will get a little easier after every good report. Hang in there and just remember who is in control. :>)
Thomas0 -
thank youThomasVanVoorhis said:Hello again
Sorry it has taken me so long to respond, but I thought if somebody replied I got a notification in my email, I guess not.
Ok, let's see, my tumor was surgically removed, so all that shows up on the MRI is the empty cavity, it was about the size of a gulf ball.
I too lost everything, which was so hard for me because I had been on my own for so long. I also had to move back in with my parents, which was a major adjustment not just for me, but for them as well. In my mother's eyes I was still her little boy, you know how that is lol, but I was far from a little boy. I went into the service when I was 18 and served almost 10 years. I did not move back to Ohio until I was 31. I am a combat veteran and a very independent person, it was very hard to LET people help me. Before my diagnoses I was an OTR truck driver, so it was very difficult for me when I was told I could no longer drive, this was temporary. When all this took place I was living in Sidney, Ohio, just a few miles up the road. I now live in Columbus, Ohio, which is still close by, so yes I would love to be an inspiration to him, anybody as far as that goes. Now, I am assuming that when you said he lost his friends, it's because he had to move back to Ohio? Well, keep in touch, my email is thomasvanvoorhis@yahoo.com so shoot me an email for a quicker response. Talk to you soon.
Thomas
Hi thomas:
My 18 year old daughter was diagnosed with Anaplastic Astrocytoma, grade 3 in February 2011. She had surgery,which removed almost 90%. They six weeeks of radiation, coupled with Temodar at night. Now she is having an infusion two times a month combined 5 days of Temodar on the last infusion. Her tumor was also left frontal lobe, pushing on the motor skills area. She has a significant speech deficit and some cognitive impairments. We are on a very heavy therapy schedule: speech, Physical and occupational. Sometimes, I just get so scared about whether we can beat this dog gone cancer. I hold fast to my faith. So please, continue to be an inspiration when you can. All of the patients and caregivers need to hear from survivors. So, thank you and God Bless!0 -
Forgotalutiiqmom said:thank you
Hi thomas:
My 18 year old daughter was diagnosed with Anaplastic Astrocytoma, grade 3 in February 2011. She had surgery,which removed almost 90%. They six weeeks of radiation, coupled with Temodar at night. Now she is having an infusion two times a month combined 5 days of Temodar on the last infusion. Her tumor was also left frontal lobe, pushing on the motor skills area. She has a significant speech deficit and some cognitive impairments. We are on a very heavy therapy schedule: speech, Physical and occupational. Sometimes, I just get so scared about whether we can beat this dog gone cancer. I hold fast to my faith. So please, continue to be an inspiration when you can. All of the patients and caregivers need to hear from survivors. So, thank you and God Bless!
I also had a little problem with my speech and putting words together before and directly after the craniotomy, but it eventually went away on it's own. There is a song that I used to sing quit often, at the end of the song I will send you a link that you can go to hear the sang how it is sung by a friend of mine with a voice that make the word heavenly come to mind.
POWER POSITION
WHEN I NEED THE STRENGTH TO GO ON
THROUGH LIFE'S TROUBLED SEAS;
WHEN THE SKIES HAVE ALL GROWN CLOUDY
TIL MY EYES NO LONGER SEE
THERE A PLACE I GO FOR POWER
IT'S WHERE GRACE FIRST MET ME
IN THE POWER POSITION, DOWN ON MY KNEES
(CHORUS)
IN THE POWER POSITION, DOWN ON MY KNEES
I CAN TALK TO THE MASTER, HE'LL CALM THE RAGING SEAS
I'M NOT PERFECT IN THIS WORLD BELOW
BUT I'M FORGIVEN WHEN I FALL
INOT THE POWER POSITION, GOD HEARS IT ALL.
WHEN A KING WITH SO MUCH POWER
TOLD DANIEL "YOU CAN'T PRAY"
NO, DANIEL HE DID NOT LISTEN
SO THE KING PUT HIM AWAY
AND HE THREW HIM IN A LIONS DEN
WHERE HE FELL DOWN ON HIS KNEES
INTO THE POWER POSITION, GOD SET HIM FREE
(REPEAT CHORUS)
I used to sing this song at my Church, it helped Christians through some hard times and brought numerous lost souls to Christ. I do not have a link with me singing it, but my good friend Richard Propps does a wonderful job. The name of the band is "BLUE STORM" and they were wonderful, they split up awhile ago which was a very sad day for the music world. I heard recently that the fiddle player, Steve Williams had past away due to heart problems. I actually run that site, but I have not been on it in years and probably don't remember the password anyhow. Well, let me know what you think. Hope you enjoy, and give your daughter a hug for me and tell her everything is going to be all right, thanks.
God Bless,
Thomas
http://www.myspace.com/richardpropps0 -
Himomsworld said:Thank You
Hi,
My 13 yr old daughter has AA3 and I have been feeling pretty down lately as her next MRI is coming up in a couple of weeks. Her last MRI was clear with no evidence of disease but, she has been off of her chemo meds (Avastin, etoposide and cyclophosphamide) for 3 months now and this will be the first MRI since she stopped. I am already a nervous wreck. Your post was just what I needed. Thanks.
The message I posted with the song is also for y'all. So, you too, give your little angel a hug for me and tell her everything is going to be ok. :>)
God Bless,
Thomas0 -
will look at songThomasVanVoorhis said:Forgot
I also had a little problem with my speech and putting words together before and directly after the craniotomy, but it eventually went away on it's own. There is a song that I used to sing quit often, at the end of the song I will send you a link that you can go to hear the sang how it is sung by a friend of mine with a voice that make the word heavenly come to mind.
POWER POSITION
WHEN I NEED THE STRENGTH TO GO ON
THROUGH LIFE'S TROUBLED SEAS;
WHEN THE SKIES HAVE ALL GROWN CLOUDY
TIL MY EYES NO LONGER SEE
THERE A PLACE I GO FOR POWER
IT'S WHERE GRACE FIRST MET ME
IN THE POWER POSITION, DOWN ON MY KNEES
(CHORUS)
IN THE POWER POSITION, DOWN ON MY KNEES
I CAN TALK TO THE MASTER, HE'LL CALM THE RAGING SEAS
I'M NOT PERFECT IN THIS WORLD BELOW
BUT I'M FORGIVEN WHEN I FALL
INOT THE POWER POSITION, GOD HEARS IT ALL.
WHEN A KING WITH SO MUCH POWER
TOLD DANIEL "YOU CAN'T PRAY"
NO, DANIEL HE DID NOT LISTEN
SO THE KING PUT HIM AWAY
AND HE THREW HIM IN A LIONS DEN
WHERE HE FELL DOWN ON HIS KNEES
INTO THE POWER POSITION, GOD SET HIM FREE
(REPEAT CHORUS)
I used to sing this song at my Church, it helped Christians through some hard times and brought numerous lost souls to Christ. I do not have a link with me singing it, but my good friend Richard Propps does a wonderful job. The name of the band is "BLUE STORM" and they were wonderful, they split up awhile ago which was a very sad day for the music world. I heard recently that the fiddle player, Steve Williams had past away due to heart problems. I actually run that site, but I have not been on it in years and probably don't remember the password anyhow. Well, let me know what you think. Hope you enjoy, and give your daughter a hug for me and tell her everything is going to be all right, thanks.
God Bless,
Thomas
http://www.myspace.com/richardpropps
Thanks! I need the inspiration. I watch Joyce Meyer in the morning, do you? That really helps every day.God Bless.0 -
Wishing you the bestmomsworld said:Thank You
Hi,
My 13 yr old daughter has AA3 and I have been feeling pretty down lately as her next MRI is coming up in a couple of weeks. Her last MRI was clear with no evidence of disease but, she has been off of her chemo meds (Avastin, etoposide and cyclophosphamide) for 3 months now and this will be the first MRI since she stopped. I am already a nervous wreck. Your post was just what I needed. Thanks.
Hi Momsworld:
Been wondering how you are doing. Give all of your worries to God - he will take them. "Thank you Jesus for the healing you are doing in Tina's 13 year old daughter. We know that all things are possible when we ask for it in your name Jesus. Thank you for all of the time that Tina and her daughter have each day. Thank your for all of the support found on this website. We claim new health on Tina's daughter." Amen. Thinking of you lately and wishing you the best.0
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