Grade 3, an anaplastic astrocytoma

LadyDevilDog

alutiiqmom said:

thank you Candice T
Hi,

My daughter was diagnosed with Anaplastic Astrocytoma 3 at 17. They resected 89-90%, then she had radiation. We are currently undergoing chemo for one year also. So, I really appreciate you sharing your story to help others. It gives me hope to read of others who are living on and surviving this illness. I know that our faith is really carrying us and I am grateful for our believe in God everyday. God Bless you. Enjoy every moment of your life. Happy Thanksgiving.
Edna

Hi Edna
My son is 10 and was diagnosed with AA3 on March 6, 2012. His father and I are scared out of wits. We enrolled him in a protocol where he will receive the chemo drug voronistat while he takes his 6 weeks of radiation. Once that is finished, he will be receiving both Avastin and Temozolimide. We caught his tumor with a simple eye exam. I still remember the horror in mind when that doctor referred us to the ER and then suddenly we were on an ambulance to the children's hospital in St. Pete. Is it normal to feel like this is just an ugly, ugly dream? Dad handed over full custody without so much as a whimper and I have to call him and take Ethan by to see him because he doesn't reach out. Are there other parents out there that have experienced this? A loved one pulling away? I am so overwhelmed and just trying to hold things together and believe that the statistics out there are outdated and simply can't be right. He's so young and should have a chance to live. Were you angry a lot in the beginning of her battle? How did you make it through to this point? I am so hungry for some degree of hope. I keep telling myself that this trial and the radiation is going to help but I still pray every day and plead with God for my son's life. Praying there is some way I can trade places with him. I've led a full life and his is just beginning. He's so brave and doesn't complain (well, hardly ever..he hates taking the handful of steroids every day). When was your daughter dianosed? How is she doing now? I could really use some hope..any hope.

Maria

alutiiqmom

LadyDevilDog said:

Hi Edna
My son is 10 and was diagnosed with AA3 on March 6, 2012. His father and I are scared out of wits. We enrolled him in a protocol where he will receive the chemo drug voronistat while he takes his 6 weeks of radiation. Once that is finished, he will be receiving both Avastin and Temozolimide. We caught his tumor with a simple eye exam. I still remember the horror in mind when that doctor referred us to the ER and then suddenly we were on an ambulance to the children's hospital in St. Pete. Is it normal to feel like this is just an ugly, ugly dream? Dad handed over full custody without so much as a whimper and I have to call him and take Ethan by to see him because he doesn't reach out. Are there other parents out there that have experienced this? A loved one pulling away? I am so overwhelmed and just trying to hold things together and believe that the statistics out there are outdated and simply can't be right. He's so young and should have a chance to live. Were you angry a lot in the beginning of her battle? How did you make it through to this point? I am so hungry for some degree of hope. I keep telling myself that this trial and the radiation is going to help but I still pray every day and plead with God for my son's life. Praying there is some way I can trade places with him. I've led a full life and his is just beginning. He's so brave and doesn't complain (well, hardly ever..he hates taking the handful of steroids every day). When was your daughter dianosed? How is she doing now? I could really use some hope..any hope.

Maria

keep the faith
Hi Maria:
My duaghter was diagnosed in February 2011. She was diagnosed with AA3. She had 6 weeks of radiation coupled with the Temodar. She had a port installed in May 2012 and we have been doing chemo since then. She had an infusion every other week. Her chemo is Avastin and Irinetecan. During the last infusion of the months she takes the Temodar for five days at home. She is doing good right now. Her MRI's are stable,they show no progression. I have felt a lot of anger, but my husband did. I have mostly felt great sadness for my daughter and anxiety about the future. My faith has grown tremendously. I watch Joyce Meyer every week day. I try and read positive scriptures. Claim victory on this cancer! There are many people who live for a long time. Do not believe the statistics. Every person is different. Believe that all things work together for your good and God has good plans for you and your son. Pray for your Son's Dad and try and talk to him about supporting your son. At the beginning of this month we went to MD Anderson for a 2nd opinion and they told us they thought Sarah had Glioblastoma, which is a worse diagnosis. The Seattle doctor did not change their diagnosis. Who knows what to think. We also take our daughter to a naturopath to get supplements, such as : Curapro, which is supposted to help inflammation and maquiberri which is good for the brain. Email at: edna@camai.com it is easier for me. I send God's blessing to you. Fight the good fight and just surround your on with love. You can do this!
Love, Edna

MarkKav

charlie said:

Have Faith
Hey
My husband was diagnosed with anaplastic oligoastrocytoma grade III in May of this year. He had surgery, radiation, and chemo as well. He is 34 years old and a principal of a middle school. He has not missed many days of school, so we are extremely blessed. He is not very positive about this disease. I try to encourage and tell him to have Faith. Easy for me to say, I guess. The reason I am writing is there is a great book called, Healed of Cancer by Dodi Osteen. It is a great book about healing. Also check out carepages.com for other people that are dealing with brain cancer. Our oncologist and radiologist are christians and have said many times that the attitude and faith of the patient goes a long way in determining survival.

Everyone still doing ok?
Hi there,

This is my first time posting on this site. I'm Irish but selected this site because I feel people on the US are most up to speed on medicine as well as online communication.

I've read all of the stories here and find some very encouraging, which is good. In particular, I've noticed that most posters are female which concerns me because women are known to be tougher than men (IMO) and they statistically have a lower incidence of brain tumours too. Sorry about that but I'm really getting tired of looking at stats and figures and to add insult to that, my neurosurgeon does not like to quote anything for fear of misleading me.

Anyway, my story goes like this:

1. Diagnosis on 29 May 2009 from MRI - tumour considered to be very low grade and possibly not growing much at all but there was no rush to operate. Tumour located in RHS frontal lobe.

2. Following repeated scans (originally every 3 months, followed by annually) the tumour was seen to have changed dramatically & grown enough to force surgery on Feb 2012.

3. Surgery "successful" on mid Feb with 80% removed.

4. Now mid way through temodar and radiation treatment for 7 weeks to be followed by monthly 5 days following every 23 on temodar.

From what I can see, this is pretty standard procedure... But I have a few questions.

Listening to those out there with more experience and having discussed these things more with others, any feedback would be appreciated:

Does anyone know other males aged about 37 with a similar situation to mine who is doing ok?

I don't want to hear the 3-5 year thing from my neurosurgeon but would be lifted to hear about someone doing better.

I've been given a book called "The Healing Code" written by Alexander Lloyd and Ben Johnson which I'm finding very interesting. Has anyone read the book or tried the Healing Code and what's your feedback?

I've also heard of people having tumours (not brain) reduced through Energy healing. Has anyone experience of this?

I was very religious as a kid (up to age 17) but life got in the way after that but this experience has naturally pointed me back that way again and maybe that's the only thing I'm banking on these days.

Anyone who can provide me with their story that will give me hope for the future would be really appreciated.

Thanks

M

MarkKav

kris4john said:

Another AAIII Survivor Here
My doctor discovered a 'spot' in my right temporal lobe/insula in Aug 2005 (I was 34 y/o male). They watched and waited until 2007 when I started having simple focal seizures. Had a craniotomy Apr 2007 at M.D. Anderson. Diagnosed as AA-III. They removed somewhere between 70-95%...left the tumor portion in my insula. The tumor pre-surgery was about 6 cm. Maybe about 1 cm remained. I had IMRT June - Jul 2007 and we decided not to forgo chemo. I've been on 3 month scans ever since. This past August (2010) they moved me to every 4 months. So I've passed 5 years since a 4 cm 'spot' was discovered and I'll be 4 years post treatment next July (2011). Other than the emotional roller coaster ride...I've been fully functional and able to work full time (USAF Active Duty - they still won't let me deploy).
God is good!
John

Well done John
John,

Thanks for your story. It's really encouraging for me. Keep going!

Mark

GregReese

Run with it...
Janet McCoy, all you need to do is run with it. I have an MRI every 6 months and they keep coming back with "no new tumor growth" which is what you want to hear. I was diagnosed in 2000 and had my first surgery in June in Tulsa. I had a short doctors visit one day and we decided to go to MD Anderson and once I was there (Oct 2001) they decided to to another surgery and basically gave me 5 years based on the statistics. Its now April of 2012 and I am still very well and kicking. My tumor was an Ana-plastic Astro-Cytoma with a WHO rating of 2-3.

Regards,
Greg Reese

Little Tad

ChristyM said:

I do not take the prognosis
I do not take the prognosis information to heart. I never asked about it actually! I read enough on the internet, but I know that most of those compiled statistics are from older studies, that dont necessarily tabulate in all of what is available for treatment now. And remember there are no guarantees in life, for example, that since statistics say it can come back DOESNT mean that it will. I have read stories from people on the national brain tumor foundation who have battled GBM and have made it many years SO FAR. Still alive and kickin!
I was diagnosed with an anaplastic astrocytoma in May of this year.

Life after AA
In 1997, I was diagnosed as having a spinal tumor between my shoulder blades and inside my spinal cord. This came after a three hour MRI that was to find the source of the leg spasms that I had after sitting. The neurologist,in Clear Lake, who "found it" really reacted as if I needed to be panicking. He tried to set me up with a neurosurgeon friend of his, in Pasadena, TX. I, being an engineer, wanted to do some research. Through a series of referrals, I found a doctor, who operated at Methodist Hosp., who had removed over 200 of these. Mine was 3.5 cm in length and 1.5 cm in diameter. He said that he had removed a 5 cm tumor from a lady's back a few months earlier. I chose him to do the surgery. He took me off of the Decadron that I had been taking for 3 days - cold turkey - until just before the surgery. He was concerned with possible organ damage if I took it too long. The surgery was 7 hours long. He did it in two stages. He "carved" for 3 1/2 hours. Took a 30 minute break and then 3 more hours and sewed and stappled me up. Three days later, I walked out of the hospital. Two and a half weeks later, I drove my manual shift pickup back to work for half days. A week later, I flew my fiends Cessna 172. I initially had a follow up MRI at 6 months - no reappearance! Then after the second 6 months, we switched to once a year. There was no chemo or radiation. Two years ago we had an interesting discussion. My neurosurgeon asked if I knew what kind of tumor I had. I said I understood that it was an Anaplastic Astrocytoma (AA). He said it was. He had initially thought it was benign because of the shape on the MRI. The Pathologist report had identified the cells as AA. He said that these tumors normally form back up in 6 months. Mine never has. He told me that he was good but not that good. He said I was in the hand of God region. I told him that I was good with that. I was a bivocational minister and engineer with NASA. After NASA retirement I did additional studies and have become an ordained elder. The AA damaged my nerves. The lower 2/3rds of my body is damaged. I was required to relearn some things. Things that I used to do "automatically" I now have to consciously decide how to do. Getting up into pickups is strange to me. I have difficulty finding the accelerator pedal quickly. I don't follow cars as closely as I used to. I do most of the things that I want to (Fly a plane, Ride a motorcycle, drive a car, etc.) At 69, I am more limited by Arthritis than nerve damage. I no longer do follow ups.

LadyDevilDog

diamond24 said:

update on your daughter, son has it too
Hi,
My 17 year old son was also diagnosed with A astrocytoma III. It was a small tumor by his
thalamus. It was removed by an amazing surgeon. He had surgery in May, Proton radiation therapy for 6 weeks and is currently on his 3rd round of Temodar. (5 days per month, after taking it with radiation for 42 days.) His tumor was very difficult to diagnose and they are now certain it is from previous radiation he has had from two other tumors at age 5 and again at age 12. Hi MRI is clean at this time and he has no deficits at all. He is doing well on the temodar(fatigue, nauseated but controlled) Blood counts a little low but not bad. What is the dose of Temodar(if that is the chemo) my son takes 360mg per day x 5. Do you give her anti nausea meds? My life has been devoted to taking care of my son with Cancer and he truly is a walking miracle. He will continue with the chemo for about a year and have MRIs every two months for a while. Prayer, family and faith has helped us and I hope it can help you too.

My best to you and your daughter.

dd

Hi, Diamond.
My son has AA3 on his right thalamus. I see you found a Dr that removed your son's. Do you mind emailing me? I have some questions about this doctor and the location of your son's tumor. The Dr's here won't touch Ethan's and since we are newly diagnosed, there are so many questions I have.
Please email me so we can talk? ladidvldawg@gmail.com

LadyDevilDog

cushla69 said:

hi, my name is Lourie, i
hi, my name is Lourie, i was just diagnosed with a high grade 3 astrocytoma. I start radiation and chemo pill this tuesday, the 21st. I first got sick in June. This has been a scary experience. I am a bus driver, but of course i cant drive right now, but i am an aide on the school bus now. I hope to eventually go back to driving. They say i will do radiation and chemo for 6 weeks then continue chemo for another 6 months. This is my first post, not sure how this works, but ill learn.

Hi, Lourie.
As unfortunate as it is, welcome to our club.
My 10 year old son has AA3 on his right thalamus. What type of chemo and radiation are you taking? My son went through that but his tumor is really agressive and it didn't work. Now we are moving on to a new protocol that includes Temodar, Avastin, and Ironitecan. His tumor is on his right thalamus and we've had some scary moments with him. There are great wealth of message boards out there for brain tumors and the more information you have, the better you can help your doctor help you. Be your own advocate too. If you aren't sure you understand, make them put it in layman's terms; otherwise, you'll be like me in the beginning. I didn't question, just accepted. Then when we almost lost him; I started getting smarter and now, I ask..ask..and ask some more until I understand what's going on; and don't be afraid to push the envelope with your Drs. Sometimes, they are too cautious and well, it's your life we're talking about here. Don't just accept anything they say, question it too.
Hope this helps.
Maria

ceastick

Grade 3 anaplastic astrocytoma

I am a 31 yr old male, I first got diagnosed with a grade 2 astrocytoma in 2011. Was doing very well, I even returned to work in 2012.mbut at the end of 2012 It got upgraded to a grade 3 anaplastic astocytoma. Have started chemo and things are starting to improve. I was devastated when I got the news about a month ago now but am doing pretty good, the ringing (tinnitus) in my right ear has stopped, vision is improving also. i have a 8mm mass on my brain stem

ceastick

ceastick said:

Grade 3 anaplastic astrocytoma

I am a 31 yr old male, I first got diagnosed with a grade 2 astrocytoma in 2011. Was doing very well, I even returned to work in 2012.mbut at the end of 2012 It got upgraded to a grade 3 anaplastic astocytoma. Have started chemo and things are starting to improve. I was devastated when I got the news about a month ago now but am doing pretty good, the ringing (tinnitus) in my right ear has stopped, vision is improving also. i have a 8mm mass on my brain stem

Soursop

Also guys get on to this fruit called Soursop. Here is an article on the fruit

 

http://www.sott.net/article/242555-Soursop-Fruit-Kills-Cancer-100-Fold-better-Than-Chemotherapy

AA3 parent

alutiiqmom said:

temodar question
Hi:

My 18 year old daughter was diagnosed with AA3 in February 2011. We are still finishing her 12 month treatment plan. It includes Avastin, Irinetecan and Temodar. She also had brain surgery and radiation. I am curious how long they plan on keeping him on Temodar? Where does he get treatment? We are thinking of going to MD Anderson for a second opinion, well a back up plan in th event of a reoccurrence. Right now, her MRI's are stable. I have read other posts of other people taking Temodar like a maintenance drug. I send you God's blessings!

Edna

treatment

Hi, hope you are doing great.My daughter was diagnoised with AA3 on 3/21/13. She had a seizure at school while practing drill. Then she had surgery. The doctor was able to remove 80% and now has to start Kemo and radiation. My daughter is also 17 years old. We are thinking of not doing the standard Kemo using Tamexolide and going with the experimental Bevacizumab or Vorinostat. I just saw your profile and was wondering how things are. Tyring to get over the tears.

Dad

Jemntheholograms

AA3 parent said:

treatment

Hi, hope you are doing great.My daughter was diagnoised with AA3 on 3/21/13. She had a seizure at school while practing drill. Then she had surgery. The doctor was able to remove 80% and now has to start Kemo and radiation. My daughter is also 17 years old. We are thinking of not doing the standard Kemo using Tamexolide and going with the experimental Bevacizumab or Vorinostat. I just saw your profile and was wondering how things are. Tyring to get over the tears.

Dad

Survival

Hi there! I specifically created an account so I could write this to you.  My mother was diagnosed at age 36...She had been acting strangely for a few days- then had a seizure at work.  We were absolutely devastated.  I was barely 16 at the time so she hid from me how long they "gave" her- a whopping 2-3 years max. She had surgery. She did both chemo and radiation.  It was tough on her - she was sick a lot and upset a bit about her hair...but She kept her attitude beyond positive.  As a family we kept her laughing hysterically every chance we got And absolutely refused to ever let her be upset about it. 

 

She turns 49 this coming September.  They cant find a trace of the cancer. She's happy. She's healthy. And you wouldn't know what she's been through unless you asked.  I'm beyond proud of her.  

I wanted to let you know that it's not a sentence. It's difficult to watch and breaks your heart to know they're suffering.  But keep a positive attitude.  The more "normal" we made things seem the better she felt.  Laughter really helped her accept it and pull through on the difficult days. 

 

(I apologize if this comes put strangely.  I'm onm phone)

maggie65

Spouse Diagnosed with Anaplastic Astrocytoma Grade 3

My husband was diagnosed with what we call a family nightmare brain tumor call Anaplastic Astrocytoma Grade 3 this past year end on October 2012 He had hardly no symtoms just some tingling on his left hand which he thought to be arthritis in his joints and suddenly developed a fever over night mid October we went to the hospital where we were told it was the flu but what we thought to be the flu as quick as it came it returned my husband left home seemingly fine gave me a kiss and went off to work driving through midtown Manhattan he suddenly felt what seem to be a charlie horse pain in his left cuff and promptly parked his plumbing truck vehicle which he drove while his co-worker watched and followed behind him to the side of the vehicle when he calpse to the ground what it look like a stroke was 5 seizures by the time he arrived at New York Presbyterian Cornell ER many seris of test done Blood/Urine Test, Cat Scan, X Ray and finally MRI they found he had a mass in an inoperable location in the brain, Doctors did further test 3 Spinal Tabs and determined it was Anaplastic Astrocytoma Grade 3 Cancer. We were beside ourselves and due to medical insurance we had to wait for more options of trails that can be given with this diagnoses of brain tumor and with further information we gathered it was told to us this tumor highest survival rate is 5 years, We had to find positive outcomes of this illness well its only been 6 months, my husband recieved beginning December 4th 2012 45 days of Radiation until Janauary 16 along with Chemotherapy started on Temodar Pills of Chemo 150mg and then in February 5 days Temodar Chemo regiments of 300mg in March suddenly upgraded to 400mg 5 days of Temodar. We weretold the tumor decreased and although my husabnd is unable to walk due to all the left side weakness side affects to medications his taking Dexamethasone Steriods and Insuline injections that rise his sugar glucose to the steriods affects and Baclofen for muscle spasm and Clonazepam for seizures theres alot going on now his got Nystagmus a condition that happens to nerves with people having  brain tumors and also severe constipation and swellon rectal hemmorroids my poor baby all we ask ourselves and god why? I also like to know whos out there with this condition has beat the odds and survivedthis illness past the 5 years with or not limitations of left side or right side My husband is currently in a wheelchair he went from cane, to walker to wheelchair and bed stretcher at times he cant even lift to transfer his body to the wheelchiar as his losing weight, his weak and on diapers. I pray each day now in a second opinion at Memorial Sloan Kettering Cancer Center we hope to fight this brain tumor together.

maggie65

Jemntheholograms said:

Survival

Hi there! I specifically created an account so I could write this to you.  My mother was diagnosed at age 36...She had been acting strangely for a few days- then had a seizure at work.  We were absolutely devastated.  I was barely 16 at the time so she hid from me how long they "gave" her- a whopping 2-3 years max. She had surgery. She did both chemo and radiation.  It was tough on her - she was sick a lot and upset a bit about her hair...but She kept her attitude beyond positive.  As a family we kept her laughing hysterically every chance we got And absolutely refused to ever let her be upset about it. 

 

She turns 49 this coming September.  They cant find a trace of the cancer. She's happy. She's healthy. And you wouldn't know what she's been through unless you asked.  I'm beyond proud of her.  

I wanted to let you know that it's not a sentence. It's difficult to watch and breaks your heart to know they're suffering.  But keep a positive attitude.  The more "normal" we made things seem the better she felt.  Laughter really helped her accept it and pull through on the difficult days. 

 

(I apologize if this comes put strangely.  I'm onm phone)

Amen to that she beat the tumor

My husband was diagnose with Anaplastic Astrocytoma Grade 3 this past year end of October 2012,  its been a painful and difficult journey from all the regiments and causing affects my husband is positive he will beat the odds first and most I like to say thank you for sharing such inspiring story of your mom and her survival my husband is a strong person at only 45 years old I see his strength and will his going on 46 this upcoming June this year I look forward to celebrate his birthday and survival as well and as I keep those struggling with this illness of brain tumor in prayers I also ask you and those out there who struggle this fate and read our story to pray for him as well. God bless and keep the faith thank you again for giving us hope.

AA3 parent

Jemntheholograms said:

Survival

Hi there! I specifically created an account so I could write this to you.  My mother was diagnosed at age 36...She had been acting strangely for a few days- then had a seizure at work.  We were absolutely devastated.  I was barely 16 at the time so she hid from me how long they "gave" her- a whopping 2-3 years max. She had surgery. She did both chemo and radiation.  It was tough on her - she was sick a lot and upset a bit about her hair...but She kept her attitude beyond positive.  As a family we kept her laughing hysterically every chance we got And absolutely refused to ever let her be upset about it. 

 

She turns 49 this coming September.  They cant find a trace of the cancer. She's happy. She's healthy. And you wouldn't know what she's been through unless you asked.  I'm beyond proud of her.  

I wanted to let you know that it's not a sentence. It's difficult to watch and breaks your heart to know they're suffering.  But keep a positive attitude.  The more "normal" we made things seem the better she felt.  Laughter really helped her accept it and pull through on the difficult days. 

 

(I apologize if this comes put strangely.  I'm onm phone)

Inspiration

I read about your mother what an inspirational story. I am so happy to hear that she will be turning 49. This is so new to my family and myself. We are trying to educate ourselves everyday. I want to thank all the wonderful people at Oaklands Childrens Hospital for taking care of my daughter and UC Davis Cancer center where she is at her 9th day of Chemo and radiation. She is receiving arm 1 on the clinical trial which includes Vorinostat for Chemo 2 hours before radiation. She is doing well so far except for the smell of radiation (she cant stand it) she puts a few dabs of pepperment extract on her nose and in her mouth just before. We have put together a team for Relay for Life and we are calling it Team Savana. Her younger sister is  the team captain.

Have a great day, Dennis

Artlife2013

ChristyM said:

I do not take the prognosis
I do not take the prognosis information to heart. I never asked about it actually! I read enough on the internet, but I know that most of those compiled statistics are from older studies, that dont necessarily tabulate in all of what is available for treatment now. And remember there are no guarantees in life, for example, that since statistics say it can come back DOESNT mean that it will. I have read stories from people on the national brain tumor foundation who have battled GBM and have made it many years SO FAR. Still alive and kickin!
I was diagnosed with an anaplastic astrocytoma in May of this year.

Update please

Hi i just wanted to see how you are doing?  My girlfriend was diagnosed with astrocytoma  grade 2 5 years ago and grade 3 AA a year ago. She had both surgeries and radiation and chemo. I'm terrified of the statistics. I need to start looking for a community of people who have dealt with this. 

HAILEYSMOM

AA3 parent said:

Inspiration

I read about your mother what an inspirational story. I am so happy to hear that she will be turning 49. This is so new to my family and myself. We are trying to educate ourselves everyday. I want to thank all the wonderful people at Oaklands Childrens Hospital for taking care of my daughter and UC Davis Cancer center where she is at her 9th day of Chemo and radiation. She is receiving arm 1 on the clinical trial which includes Vorinostat for Chemo 2 hours before radiation. She is doing well so far except for the smell of radiation (she cant stand it) she puts a few dabs of pepperment extract on her nose and in her mouth just before. We have put together a team for Relay for Life and we are calling it Team Savana. Her younger sister is  the team captain.

Have a great day, Dennis

Hi Dennis!
I think my

Hi Dennis!

I think my daughter is in the same clinical trial arm as your girl.  Hailey took Vorinostat before each of her radiation treatments also.  She flew thru that with no problems, but she too complained about the radiation smell.  The tumor she had was an Anaplastic Astrocytoma in her left frontal lobe.  It was found by accident....she was playing high school basketball (15yrs old at the time) and we took her to the ER for a concussion check.  Her bump on the head led us down this road.  The neurosurg and neuro dept at Primary Children's Hospital in Salt Lake have been very confident of a complete excision, but still lots of treatments to try and keep it at bay.  She had hair loss from the radiation, but it is coming back in.  Now, she is on the second part of the trial.....Temodar and Avastin.  28 day cycles, days 1-5 Temodar, days 1 and 15 Avastin.  The Avastin has been a breeze....no problems at all.  The Temodar kicks her butt, but we have found Ativan along with the Zolfran and Emend helps.  She will finish up this phase in August, right before the start of her junior year of school.  I, too, love hearing about these long term survivors.  I seem to need to hear of at least one of these survivors everyday to keep us chugging along.  

AA3 parent

HAILEYSMOM said:

Hi Dennis!
I think my

Hi Dennis!

I think my daughter is in the same clinical trial arm as your girl.  Hailey took Vorinostat before each of her radiation treatments also.  She flew thru that with no problems, but she too complained about the radiation smell.  The tumor she had was an Anaplastic Astrocytoma in her left frontal lobe.  It was found by accident....she was playing high school basketball (15yrs old at the time) and we took her to the ER for a concussion check.  Her bump on the head led us down this road.  The neurosurg and neuro dept at Primary Children's Hospital in Salt Lake have been very confident of a complete excision, but still lots of treatments to try and keep it at bay.  She had hair loss from the radiation, but it is coming back in.  Now, she is on the second part of the trial.....Temodar and Avastin.  28 day cycles, days 1-5 Temodar, days 1 and 15 Avastin.  The Avastin has been a breeze....no problems at all.  The Temodar kicks her butt, but we have found Ativan along with the Zolfran and Emend helps.  She will finish up this phase in August, right before the start of her junior year of school.  I, too, love hearing about these long term survivors.  I seem to need to hear of at least one of these survivors everyday to keep us chugging along.  

Hi Haileys Mom

HI This is Savana's mom. Dennis and I are both on here for support. It sounds like Savana and Hailey have the same thing both on the left frontal lobe. The surgeon was not able to remove all of the tumor there was a few arms that needs to get treated. As I understand the arm we both have been chosen for is very rare. She is on Zolfran as well and does help her too. Savana is still feeling pretty good she gets sick sometimes in the mornings. She is very head strong and tells us all the time she has got this. She is going to the junior prom on Saturday with a nice boy, we are all very excited for that. Also, she made the drill team for the second year, which is the high school dance team that perfom at all the sporting events  I was worried that she was working her body too hard but at the same time I did not want her to miss out on the opportunity. Dennis mentioned to Savana about maybe Hailey and Savana texting each other since they are the ones actually physically, mentally, and emotionally going through this. If that is something you think your daughter would be interested in please let me know. I can send you my email address with Savana's #.

Debbie and Dennis

ATomei

alutiiqmom said:

Temodar question
Hi Dimond:
My daughter is doing better. We switch oncologists and that made a big difference. The new doc gives her a little decradon with the infusion and that seems to help the nausea.
Sarah is on the same plan for Temodar. She takes an infusion 2x a month and on the last infusion we take pills at home for five days. The temodar is 400mg. a day. The infusion is Avastin and Irinetecan.
Today, the doc said she wants to stop the Temodar because Sarah does not tolerate it well. We are very afraid to do that. We have had two good MRI's. We are supposed to follow this plan until next May, but now they want to stop the Temodar. What do you think? They think it makes her too sick and they cannot say for sure it works. They know the Temodar works inconjunctin with the radiation, but apparently no studies have been done on this part. Please let me know what your doctor says. Sarah has the Anaplastic Astrocytoma 3 too. God's blessing to you all.
Edna

AA3

Hi alutiiqmom,

 

My fiance was diagnosed August 2011 with an inoperable Anaplastic Astrocytoma 3, she underwent 6 weeks of radiation which shrunk the tumor quite a bit from a 4cm to under 1 cm.  The tumor was deemed inoperable because of its location in the motor function area of her right side of the brain. We actually found out about all of this because of a limp she starting having in her left leg.  6months after the radiation and seizures due too brain swelling, there was tumor growth again and then our oncologist suggested we start the temodar for 12 months.  She handled it pretty well with fatigue and constipation which we had pills to help her with.  In her 6month of temodar which was 1 month ago, there was loss off feeling in her leg and her arm which was new and when we went for her 2month MRI it showed a significant amount of growth...from being stable for 6months to growing in a few weeks...everhything went sideways on us very quick.  Our oncologist now has side he didn't expect the aggressiveness of the tumor and said to try CCNU for 6weeks and it would have a relatively low chance of working for her and she would then need to goto avastin if that was the case.  Then from there only clinical trials were going to be in front of us...it was a very hard thing to hear but we kept faith and prayed.  After 1 week of the CCNU she started moving her arm and leg again that were pretty much paralyzed.  Her arm was like frozen tucked into her torso area and she would get muscle spasms...and her leg was so week were she needed a wheel chair. Its 3weeks into CCNU as a single agent, and she walking by herself.  Ive been reading on this website for almost 2years now and just decided to join and share her story.  We have faith and fight on our side and its nice to hear all the good stories about the battle against this stupid disease.  I'm hoping this CCNU works for a long time for her and the next MRI is coming up in may 15th.  Seeing her positive signs im praying everyday that its shrinking and the oncologist has something positive to say. Ive read your story and i hope everything works out with the chemo's and medications for your daughter. I don't know if they've suggested CCNU Lomustine for your daughter but it seems to be working for my fiance.  I wish you only the best and my prayers will be with you and everyone here.  God Bless

 

Adrian

dwaldron

Odds

Hi all,

A coworker of mine and myself were diagnosed with the same type of cancer AA3, had the same surgery date and the same surgeon.  If that's not an odds beater then I don't know what is.  With such a rare cancer, the numbers aren't there to back up any statistical projection.  And if they had the numbers, gotta think about outliers like my coworker and me...astronomically low chance of that happening.