Grade 3, an anaplastic astrocytoma

Hope456

AngelRay2008 said:

I had AA III also
Hi Janet, I was diagnosed in October 2008 with antiplastic astrocytoma grade III after 2 seizures. I had partial surgery; they removed as much as possible without causing me to have a stroke. After surgery, I had 35 treatments of radiation combined with Temodar capsules. I had no ill effects except for loss of energy. I have many Angels who are constantly praying for me and helping me. God has richly blessed me through my having cancer. Needless to say, it's been very scary for me, my family and friends. I began Avastin in May 09 with infusions about twice/month. I think the Avastin is the drug that really helped me; it blocks the blood flow to the tumor. All of my MRI reports have been stable. One MRI last Oct (2010) showed some recurrence of very small spots, but they had told me to expect some recurrence. Now, I take Temodar capsules at night (80 mg) and Avastin IV infusions every 3 weeks. My local oncologist consults with the Brain Tumor Center at Duke University, and I feel that I'm receiving the greatest care. I do believe that this is all part of God's plan for my life, and that He will carry me through and I will soon be able to enjoy ALL the things I did when I was completely healthy. I'm already amazing the doctors! They didn't expect me to do this well when I was first diagnosed, but I was in pretty decent physical shape when I got sick and I have a strong faith and positive attitude. So, keep the faith and check out Caring Bridge; my site is http://www.caringbridge.org/visit/ritahunt. You may want to set up one for your nephew. Lots of well wishes to you and your family; when cancer strikes, the entire family needs care. Pray without ceasing.

Rita

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?

KMPonder

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?

My hubby responded extremely
My hubby responded extremely well to his radiation (33 treatments) and Temodar for his three inoperable AAs diagnosed in August 2009. He remains doing well from those, but he unfortunately developed a GBM on the optic chiasm we are now treating/fighting.

Has your doctor suggested Ritalin for energy? When hubby returned to teaching post radiation in January 2010, the Ritalin really gave him the energy he needed to get through the day. You've got to rest when you can, but this really did make a noticeable improvement.

Chemo fatigue is something I didn't realize was so serious until we went down this path. It's real, and sometimes rest is the only way to combat it.

I wish you complete healing. Even as my husband endures his third malignant type tumor at age 45, God is most definitely still good!

Hope456

KMPonder said:

My hubby responded extremely
My hubby responded extremely well to his radiation (33 treatments) and Temodar for his three inoperable AAs diagnosed in August 2009. He remains doing well from those, but he unfortunately developed a GBM on the optic chiasm we are now treating/fighting.

Has your doctor suggested Ritalin for energy? When hubby returned to teaching post radiation in January 2010, the Ritalin really gave him the energy he needed to get through the day. You've got to rest when you can, but this really did make a noticeable improvement.

Chemo fatigue is something I didn't realize was so serious until we went down this path. It's real, and sometimes rest is the only way to combat it.

I wish you complete healing. Even as my husband endures his third malignant type tumor at age 45, God is most definitely still good!

Ritalin
My radiation oncologist actually talked about putting me on ritalin. We were trying just walking more and being more active naturally, but that is not giving more energy. I guess I was trying to avoid another medication, but maybe I should try it. I'm so tired all the time. I would love to be awake more and be more active.

RDJ1

kitkatkaz said:

Anaplastic Astrocytoma stage 3 5ys out cancer free

Hi there, I am 5yrs out, Cancer free and drug free. I know many authroities do not give much hope past 2yrs.

The tumor I had was in the right frontal lobe. Had 28 radiation treatments, and 6 months of Tremdor chemo pills. Steriods, and dilantin, but have not taken any meds since I finished the Chemo pills.

I am sure there are more people out there, cancer free, from this as I am. I was back to work full time, within two months from operation, had to be out of work for the week of chemo pills, each month following after returning to work.

Hope this is helpful.... I would like to hear from someone who is futher out then me.
God Bless KitKat

Ditto on the treatment here KITKATKAZ
I was diognosed Jan 4th this year, had the surgery Feb 21st. That went well with no side effects. I am currently doing 33 radiation treatments and temodar. No side effects at all yet. I also am doing the steriods and dilantin. Back to work part time 3 weeks after surgery. Hoping for good results as in your case, nice to hear something positive.Keep up the positive attitude and success!!!!!

SP24

Fusionera said:

Grade 3, an anaplastic astrocytoma
Hi Janet,

I just joined this network and I saw your post. I am a 14-year survivor of a grade 3 oligoastrocytoma, so yes it CAN be done.

The doctor told my parents flat out on September 8, 1995 when I was diagnosed that "we will do everything we can to make her comfortable." They weren't too optimistic after they'd found a softball-sized tumor in my right temporal lobe. At that point I was given about 3 weeks. I had a nearly seven-hour surgery 4 days later on Sept. 12th. I was 26 years old, not too much younger than your nephew-in-law.

I had radiation and started what was then a standard chemo cocktail, which did not work. I had a second surgery 7 months after the first, in April 1996, and they got everything that time. I was then enrolled on the Temozolomide clinical trial (I was one of the original guinea pigs on that drug!) and successfully completed it in May 1997.

Unfortunately, in 2005, 8 years after chemotherapy and without any symptoms, the tumor returned. I found out the day that escrow closed on my house...lucky me! No surgery this time, just more chemo and now I am fine, in remission, and still tumor-free. My neuro-oncologist said that we will treat this more like a chronic condition than a life-threatening illness like when I was diagnosed in 1995.

So- YES...it can be done. I'm still here over 14 years later...oh...AND I got my master's degree after having two brain surgeries. :-)

Thank you for your encouragement.
I am a 23 yr old who was diagnosed with a lemon sized, G3 Astrocytoma in the Fall of 2010. Since then, I have undergone surgery at MD Anderson and 6 weeks of radiation. I am doing great now and gaining my strength and independence back. My last scans looked good, but I have not heard too many long term positive outcomes. I am also a graduate student working on my Master's of Physician Assistant studies. I will begin school again in a few months, and am eager to see if the surgery and radiation have affected my cognitive abilities. Thanks for sharing your positive story! I will be receiving MRIs every other month to make sure there is no more growth.

nuezdallas

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?

My Mom was Diagnosed last year Sep.14,2010
Recently my mom was diagnosed with AA3. My senior year in high school is as good as it gets.. As long as my mom makes it through. I spent months in the hospital.. missing school.. 100$ in gas. My family is strong. That wait of a 7 hour surgery... killed me... i was worried the whole time. I dont know that much about it. But i am doing a project for my anatomy class on this very disease... I waled relay. for the very first time. My life has change dramatically. I would really like to ask all of you questions on how it happened? My moms was out of NO where.
You can contact me at nuez.dallas@hotmail.com
Relay for life really opened my eyes... i know i am not alone on this... I pray for you all.
I go home early from school... to help with my dad. He stays home 24/7. Please keep me updated everyone. Its a scary thing.. im young but ive learned so much responsibility.

Keep Faith

Dallas:)

Hope456

nuezdallas said:

My Mom was Diagnosed last year Sep.14,2010
Recently my mom was diagnosed with AA3. My senior year in high school is as good as it gets.. As long as my mom makes it through. I spent months in the hospital.. missing school.. 100$ in gas. My family is strong. That wait of a 7 hour surgery... killed me... i was worried the whole time. I dont know that much about it. But i am doing a project for my anatomy class on this very disease... I waled relay. for the very first time. My life has change dramatically. I would really like to ask all of you questions on how it happened? My moms was out of NO where.
You can contact me at nuez.dallas@hotmail.com
Relay for life really opened my eyes... i know i am not alone on this... I pray for you all.
I go home early from school... to help with my dad. He stays home 24/7. Please keep me updated everyone. Its a scary thing.. im young but ive learned so much responsibility.

Keep Faith

Dallas:)

Your mom's dignosis of AA3
Hi Dallas,

I was diagnosed on Feb. 8th. Don't lose hope. According to my oncologist, this disease is treatable and can be curable. I just finished 34 radiation treatments and my four tumors are decreasing even before they expected them too. I have three kids, 14, 22, and 26. Our faith is what gets us through all of this. Lean on that. Actively read a devotional or your Bible, or a bible study or do youth group. You'll need that support - as well as your mom and dad. For your mom, I would highly recommend Barbara Johnson's book, Stick a Geranium in my Cranium - laughter and humor are key. But also recognize, that there will just be bad days and good days. Now that my I'm on the back side of the treatments, I feel much better. I just started weight training at a gym at my oncologist recommendation and it is making me feel much better. And, I'm getting some strength back in my legs - the steroids just about took it all away. As for how or why she got it, you'll never know is what they are telling me. I only had a few mild symptoms for two weeks before I was violently ill and being admitted to the hospital.

Hang in there and stay strong and positive,

Shelly

Kimberlyann72

Hope456 said:

Your mom's dignosis of AA3
Hi Dallas,

I was diagnosed on Feb. 8th. Don't lose hope. According to my oncologist, this disease is treatable and can be curable. I just finished 34 radiation treatments and my four tumors are decreasing even before they expected them too. I have three kids, 14, 22, and 26. Our faith is what gets us through all of this. Lean on that. Actively read a devotional or your Bible, or a bible study or do youth group. You'll need that support - as well as your mom and dad. For your mom, I would highly recommend Barbara Johnson's book, Stick a Geranium in my Cranium - laughter and humor are key. But also recognize, that there will just be bad days and good days. Now that my I'm on the back side of the treatments, I feel much better. I just started weight training at a gym at my oncologist recommendation and it is making me feel much better. And, I'm getting some strength back in my legs - the steroids just about took it all away. As for how or why she got it, you'll never know is what they are telling me. I only had a few mild symptoms for two weeks before I was violently ill and being admitted to the hospital.

Hang in there and stay strong and positive,

Shelly

This thread is full of hope
Thank you for that. All I read on the internet is so negative, the statistics etc. it makes me want to quit reading the internet or doing searches. My father was diagnosed with grade III astrocytoma had total resection (I realize some cells are always left) he is undergoing 6 weeks of chemo/radiation (temodar). My dad is 69, he is doing well other than being a bit unsteady on his feet since starting the chemo/radiation. I need hope, I have faith in God. I am scared though. I love him more than my own life.

PBJ Austin

Kimberlyann72 said:

This thread is full of hope
Thank you for that. All I read on the internet is so negative, the statistics etc. it makes me want to quit reading the internet or doing searches. My father was diagnosed with grade III astrocytoma had total resection (I realize some cells are always left) he is undergoing 6 weeks of chemo/radiation (temodar). My dad is 69, he is doing well other than being a bit unsteady on his feet since starting the chemo/radiation. I need hope, I have faith in God. I am scared though. I love him more than my own life.

Kimberlyann72
I urge you to please stay off the internet except this site. Much of what you will find is out of date and/or worst case scenarios. When my sister was diagnosed with AA3 I nearly drove myself crazy reading all sorts of grim stuff about AA3. Then I found this site and I finally had hope. My sister went through 6 weeks of radiation which was tough. Then she had about 8 months of chemo (also temador) which wasn't as bad, and in less than a year's time she was in remission!! Of course we can't possibly know how long that remission will last but it's been over a year now since her MRI's came back clear and I am thankful for every day. Don't lose hope.

alexof25th

Grade 3 anaplastic astrocytome
im in the US Army Infantry and was on my secound deployment when i started having all this pain in my head where i couldnt get off my bed in Iraq thought it was just migraines. i was sent to a bigger Fire base where this Colonel saw me with my head in my hands and asked me a few questions and gave me a cat scan. April 2009 Im told at the age of 25 in Iraq that i have a tumor so i was medevac out to Fort sam houston where i eventually had surgery at Md Anderson and was walking 4 hours after brain surgery smoking outside a cancer treatment center figured i already had cancer. From the moment i found out it was a Anaplastic Astrocytoma Grade 3 and what my chances were i was determined not to make this more difficult on family and friends. I have since completed radiation and chemo and now get MRI's every 3 months. I finally found someone through her mother a breast cancer survivor that i love and loves me. And for the first time im a little scared because I love her so much and dont want her to hurt. im about to retire from the Army and stay in Texas.

DistancerunnerXC

alexof25th said:

Grade 3 anaplastic astrocytome
im in the US Army Infantry and was on my secound deployment when i started having all this pain in my head where i couldnt get off my bed in Iraq thought it was just migraines. i was sent to a bigger Fire base where this Colonel saw me with my head in my hands and asked me a few questions and gave me a cat scan. April 2009 Im told at the age of 25 in Iraq that i have a tumor so i was medevac out to Fort sam houston where i eventually had surgery at Md Anderson and was walking 4 hours after brain surgery smoking outside a cancer treatment center figured i already had cancer. From the moment i found out it was a Anaplastic Astrocytoma Grade 3 and what my chances were i was determined not to make this more difficult on family and friends. I have since completed radiation and chemo and now get MRI's every 3 months. I finally found someone through her mother a breast cancer survivor that i love and loves me. And for the first time im a little scared because I love her so much and dont want her to hurt. im about to retire from the Army and stay in Texas.

Best of luck!!
I am retired USAR..I did have 8 years active duty but nothing like your experience.
I take my wife to MD Anderson..always want her MRI's to go off at Mays Clinic...but lately, they've all been 3rd floor main building...
Man, I like that big waiting room over at Mays..
My wife has GBM4...
Be careful about that radiation...
If the report indicates "flairs" or "treatment effects" tell the doc to watch that close!
I never dreamed radiation treatments could do so much to a person..but it really sent my wife for a loop about a year after the treatments were over....
Best of luck to you!
I think the real secret to health are those mashed potatoes with the peals grounded up in them in the MD Anderson chow hall.

PBJ Austin

alexof25th said:

Grade 3 anaplastic astrocytome
im in the US Army Infantry and was on my secound deployment when i started having all this pain in my head where i couldnt get off my bed in Iraq thought it was just migraines. i was sent to a bigger Fire base where this Colonel saw me with my head in my hands and asked me a few questions and gave me a cat scan. April 2009 Im told at the age of 25 in Iraq that i have a tumor so i was medevac out to Fort sam houston where i eventually had surgery at Md Anderson and was walking 4 hours after brain surgery smoking outside a cancer treatment center figured i already had cancer. From the moment i found out it was a Anaplastic Astrocytoma Grade 3 and what my chances were i was determined not to make this more difficult on family and friends. I have since completed radiation and chemo and now get MRI's every 3 months. I finally found someone through her mother a breast cancer survivor that i love and loves me. And for the first time im a little scared because I love her so much and dont want her to hurt. im about to retire from the Army and stay in Texas.

Hello alexof25th
Greetings to a fellow Texan!! Or should I say howdy? :-)

Alex, I would like to make an appeal to you in the kindest possible way. My sister was also diagnosed with AA3 in 2009 at the age of 25 and like you, she had surgery at MD Anderson. She was also a smoker. The fact that you have cancer is not a reason to continue smoking, in fact it is all the more reason you should quit. I know it's hard, I've seen my sister struggle with this monkey on her back. The stress of having cancer makes it even harder. But you already know you are prone to cancer so it really is imperative you should stop so you can enjoy life with your new love.

I apologize if you feel I am overstepping my boundaries but just a few days ago I lost a friend to cigarettes. AA3 is not preventable but most lung cancer cases are.

Wishing you and everyone on this board the very best, you are all in my heart and my prayers.

Lifeistooshort

Wow, situation sounds like mine almost 9 years ago. My husband was diagnosed with an AA grade 3 in his frontal and temporal lobes 3 days after my son turned 3. Here we are almost nine years later and he is still with us. I am truly convince he will outlive me. He has his issues that affect mostly his quality of life but is still alive and well don't let statistics bother you. My hubby was 30 when diagnosed as well.

soya

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.

anaplastic astroytoma grade 3
Hi Iam new at this I have been reading about your story for quite some time, how is your wife now, my sister she has the same and now she is taking her chemo pills this is the 3rd month, doing not bad but 2 days ago she start feeling kinda lightening in her head it could be a small seizure, did your wife experience any symptoms like that, its been really hard for the hall family we are really close and she have 2 young children 8 and 9, Iam always praying for miracles could you tell me a little more about your wife now and what the doctor usually say and do u know most people if they out ive the the 5-to 10 years thank you so much, Iam praying for all the people suffering from this evil sickness.

micgrace

Lifeistooshort said:

Wow, situation sounds like mine almost 9 years ago. My husband was diagnosed with an AA grade 3 in his frontal and temporal lobes 3 days after my son turned 3. Here we are almost nine years later and he is still with us. I am truly convince he will outlive me. He has his issues that affect mostly his quality of life but is still alive and well don't let statistics bother you. My hubby was 30 when diagnosed as well.

Hope for all
Thanks. My wife has just been dxed with same. It was stated to me as a stage 3 glioma (same). Since I have training it couldn't be hidden from me and the neurosurgeon comment on that fact since I asked many pointed professional questions. The worst part is not knowing how long she will be around.

My wifes is mainly in the Left parietal lobe with a small intrusion into the temporal lobe and R hemisphere. Operation is scheduled for Friday for a resection. Estimated removal is 70% due to the depth. All higher cognitive function is absent along with limited movement on the RHS.

cushla69

Fusionera said:

Grade 3, an anaplastic astrocytoma
Hi Janet,

I just joined this network and I saw your post. I am a 14-year survivor of a grade 3 oligoastrocytoma, so yes it CAN be done.

The doctor told my parents flat out on September 8, 1995 when I was diagnosed that "we will do everything we can to make her comfortable." They weren't too optimistic after they'd found a softball-sized tumor in my right temporal lobe. At that point I was given about 3 weeks. I had a nearly seven-hour surgery 4 days later on Sept. 12th. I was 26 years old, not too much younger than your nephew-in-law.

I had radiation and started what was then a standard chemo cocktail, which did not work. I had a second surgery 7 months after the first, in April 1996, and they got everything that time. I was then enrolled on the Temozolomide clinical trial (I was one of the original guinea pigs on that drug!) and successfully completed it in May 1997.

Unfortunately, in 2005, 8 years after chemotherapy and without any symptoms, the tumor returned. I found out the day that escrow closed on my house...lucky me! No surgery this time, just more chemo and now I am fine, in remission, and still tumor-free. My neuro-oncologist said that we will treat this more like a chronic condition than a life-threatening illness like when I was diagnosed in 1995.

So- YES...it can be done. I'm still here over 14 years later...oh...AND I got my master's degree after having two brain surgeries. :-)

this is amazing Fusionera.
this is amazing Fusionera. there is still hope i kow but it is good to hear . doctor said they could never remove my tumor cause of its location. said i would have this the rest of my life be on temodar and seizure meds rest of life too

Jeannie20

KMPonder said:

My hubby responded extremely
My hubby responded extremely well to his radiation (33 treatments) and Temodar for his three inoperable AAs diagnosed in August 2009. He remains doing well from those, but he unfortunately developed a GBM on the optic chiasm we are now treating/fighting.

Has your doctor suggested Ritalin for energy? When hubby returned to teaching post radiation in January 2010, the Ritalin really gave him the energy he needed to get through the day. You've got to rest when you can, but this really did make a noticeable improvement.

Chemo fatigue is something I didn't realize was so serious until we went down this path. It's real, and sometimes rest is the only way to combat it.

I wish you complete healing. Even as my husband endures his third malignant type tumor at age 45, God is most definitely still good!

How are you and your husband
Hi Kim,

This is Jeannie I. It has been several months now since we last spoke over the phone. How is your husband doing?

Richard is doing well. Last MRI still showed no signs of the tumor decreasing but thank God it hasn't grown either.
After our next MRI on Monday we are looked into going to MD Anderson. We already have the appointment scheduled.

If I don't hear from you I will try sending you an email.

Hope all is well.

God bless.

alutiiqmom

In need of hope
Hi:

My 17 year old daughter was diagnosed with Anaplastic Astrocytoma, grade 3 in February 2011. She had surgery, but they could not remove it all. She then had 6 weeks of radiation with chemo. We are just now beginning the maintenance phase of chemo, consisting of an infustion 2x a month and Temodar for five days of the month.

Her most recent MRI had some concerning areas, so they aren't sure if the treatment is working. Does anyone know any promising experimental treatments? Also, can you share any scary MRI's that actually turned out ok?

We are Christian believers and know that God has his hand on us and our girl, but it sure feels scary at times.

momsworld

alutiiqmom said:

In need of hope
Hi:

My 17 year old daughter was diagnosed with Anaplastic Astrocytoma, grade 3 in February 2011. She had surgery, but they could not remove it all. She then had 6 weeks of radiation with chemo. We are just now beginning the maintenance phase of chemo, consisting of an infustion 2x a month and Temodar for five days of the month.

Her most recent MRI had some concerning areas, so they aren't sure if the treatment is working. Does anyone know any promising experimental treatments? Also, can you share any scary MRI's that actually turned out ok?

We are Christian believers and know that God has his hand on us and our girl, but it sure feels scary at times.

Dear alutiiqmom
Hi there, my 13 yr old daughter has been diagnosed with AA3 also. She was 12 when she was diagnosed. We found her tumor only after I demanded a ct scan from her pcp. She had surgery 4 days after. 4 days after that she had her 2nd surgery to remove tumor that they couldnt get to at the first surgery. Once her incision was healed she went through 35 radiation treatments and was taking Temodar. That was july 2010. In Sept 2010 she had her 1st MRI and there was signs of new growth. She had her 3rd surgery. At that point, her doctors told us that there was nothing more that they could do and to enjoy my time with her. I told them to go to -ell. I took all her records and left. She now goes to the jimmy fund clinic/dana farber in boston mass, she is on a 5 drug regimen costisting of 2 oral chemos that she takes everyday and IV avastin every other week. She has been cancer free for 7 months. I do know of a clinical trial that someone we know is on, it is an injection of an HPV virus that is injected into the tumor. So far his tumor has shrunk by 50%. We also are christians and believe that God is walking with us through this journey. I want you to know that you are not alone and if you EVER need to talk or vent, I am here for you. God bless you and your daughter

Jeannie20

momsworld said:

Dear alutiiqmom
Hi there, my 13 yr old daughter has been diagnosed with AA3 also. She was 12 when she was diagnosed. We found her tumor only after I demanded a ct scan from her pcp. She had surgery 4 days after. 4 days after that she had her 2nd surgery to remove tumor that they couldnt get to at the first surgery. Once her incision was healed she went through 35 radiation treatments and was taking Temodar. That was july 2010. In Sept 2010 she had her 1st MRI and there was signs of new growth. She had her 3rd surgery. At that point, her doctors told us that there was nothing more that they could do and to enjoy my time with her. I told them to go to -ell. I took all her records and left. She now goes to the jimmy fund clinic/dana farber in boston mass, she is on a 5 drug regimen costisting of 2 oral chemos that she takes everyday and IV avastin every other week. She has been cancer free for 7 months. I do know of a clinical trial that someone we know is on, it is an injection of an HPV virus that is injected into the tumor. So far his tumor has shrunk by 50%. We also are christians and believe that God is walking with us through this journey. I want you to know that you are not alone and if you EVER need to talk or vent, I am here for you. God bless you and your daughter

Your daughter
Hello momsworld.

Thank you for sharing that with us. I am so happy to hear your daughter is doing well. My boyfriend and I are Christians too and we know that prayer goes a long way.
In September of 2010 my boyfriend Richard was diagnosed with AA3. Because of where it is (occipital lobe) the tumor is inoperable or at least a high risk. What surgery isn't however?

He did Gamma Knife sugery, full cycle of radiation (the most he can do in a lifetime), is taking temodar and avastin. The tumor is stable it hasn't grown, but it hasn't shrunken either. His doctor says he may never shrink at all. He feels great but we are wondering if there is something else we should be doing.

I have done research on MD Anderson and Duke. Do you or does anyone else know where we should go to next?

Please help.