Grade 3, an anaplastic astrocytoma

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

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.

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

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

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

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

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.

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)

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

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 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.  

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

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