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Anaplastic astrocytoma

Ijeszikai
Posts: 1
Joined: Jan 2013

Hello everyone my name is Jessica and my 30yearold brother was just diagnosed with AA grade 3 they removed the ENTIRE 8oz tumor from his right frontal lobe on December 26th 2012 and today even thought the MRI results show no sign of a tumor they still want him to do radiation and chemotherapy. tHis all happened so fast and my brother really wants to speak to survivors of this cancer and listen to their story and treatments. I would love for someone to respond to this and contact my brother as a supporter it's what he really wants and it would be greatly appreciated please help us find a glimmer of light in it his dark tunnel. Thank you very much!

PBJ Austin
Posts: 346
Joined: Mar 2009

Hello and welcome to our community.  I joined this board in March 2009 when my then 25-year-old sister was diagnosed with AA3.  We were told she had 3-7 years to live and there would be no remission.  I really believed that by the year 2012 she would either be gone or on the way out.

They did surgery and removed the entire tumor but they still did chemo/rad because it could have spread.  She went through 6 weeks of radiation treatment which was rough and drained her of energy.  Then she began taking Temador as her chemo treatment.  Temador was given to her in pill form instead of thru an IV.  She took Temador along with anti-nausea meds.  She took it at night so she wouldn't have to be sick in the daytime, but as it turned out she was never sick at all.  She lost a big patch of hair in radiation treatment but she did not lose more hair from chemo.  

In less than a year from the diagnosis an amazing thing happened.  She went in for an MRI and there was no evidence of disease.  That was in the spring of 2010 and she remains in remission.  Of course the cancer can return but as long as she is NED (no evidence of disease) we are celebrating every day and we live as if it will not return. 

My advice to you is to try to be as positive as you can be.  There is new research every day and treatment is improving all the time.  I think it's very hopeful that they removed the entire tumor, that is very good news.  And don't believe everything you read on the internet.  Much of what you will find (except on this site)  is out of date.

Please post back if you have any questions, we have a great group of posters who are anxious to help.

 

Pam

salem1966
Posts: 9
Joined: Feb 2013

My son, who is now 37, had surgery for left frontal lobe brain tumor in 2009.  Surgeon not sure that he got it all.  He did radiation & Temador pill until some active cells appeared a few months later.  He then took several treatments of chemo by IV & the cells disappeared.  He is now on a maintenace dose of Avastin by IV every 3 weeks.  His surgery left him partially paralyzed.  He has had blood clots, mini stroke, swelling of the brain, & has fallen & broke his hip.  He has lost most of his speech & is totally dependent on a wheelchair now.  During the last year he has had problems with dehydration & urinary tract infections.  His doctor never tells a patient how long they may have & he doesn't want to know.  All his doctor would tell me is that if cancer cells come back & won't respond to any type of chemo, then death is usually in 6 months.  In spite of all his problems he still has a positive attitude & he is beginning his 4th year.

elizhooper
Posts: 5
Joined: Apr 2013

Hello - I've been diagnosed with Anaplastic Astrocytoma Hi-Grade 3 (seem to think it's a mix of 3/4) and being treated at Johns Hopkins in Baltimore, MD.  The team of doctors are amazing!  Mine is located in the center of my brain and climbing over the left side.  They think the best treatment is Temodar for 33 days straight and radiation Monday through Friday with weekends off.  We'll take a break for 4 weeks, MRI and then go at a differnt pace for 6 months with chemo and radiation.  If, they find we can shrink it, then we can go in and try to take out as much as possible.  It lies where my speach, vision, hearing, right side can be damaged - so I've agreed to the plan they have, after all - they are the experts.  I've had complications from the seizure that made us aware of this cancer.  I underwent a lung surgery to rid my lung of an infection, they had to send to infectious control - never seen before strand and find an anti-body to fight off.  Of course the lung surgery (and brain biopsy) set me back from March 2013 to starting treatments May 20th 2013 I hope.  I'll try to update as I can, but am really anxious about the side effects of the upcoming weeks.  I will be brave and trust in God.  If you would like to trade stories back and forth - maybe some info that we each find??  I'm taking part in a study - they are going to pull my white blood cells (some of them, not all) and freeze them until we reach the end of treatments, then give them back to me to see if it helps with recovery/fatigue/etc.  Not ground breaking - but could help none the less.

Liz Hooper

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