Anaplastic Astroblastoma

My 20 year old daughter has been diagnosed with an Anaplastic Astroblastoma. She was having horrible headaches and blurry vision. An MRI on 10/25 revealed a large tumor , 11/1 she had a gross total resection. The surgery was successful in that the MRI reflects the tumor was completely removed, She has started radiation treatments as the Dr.'s recommended that there are not enough know benefits and lots of know side effects for the chemo so for now, she is just receiving radiation and is in day 9 of 30 treatments. She is recovering from surgery well and was very healthy prior to all of this. She was just accepted into nursing school prior of all of this.
We have had a difficult time finding much information about this kind of tumor. The team that was appointed to her at 1st was not much help. We travelled out of state to obtain advice from recommended neuro ongologists. We now have her team in place and feel confident .

She is now "awakening" from the surgery and all of the medication she had been taking and is reading all the not so good information out there about astroblastomas, Can anyone share some positive outcomes for this dreaded diagnosis? And provide words of encouragement for this journey?

So appreciated,

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I wish I could give you lots of information for this specific cancer. I am a mom of a 14 year old girl that has battled against another rare form of bone cancer (Ewing's). I cannot give you the answers you are looking for but can offer you thoughts and prayers. First of all, I'm sorry that you are in this situation. It's a difficult one but also one you can conquer! Sarcoma's are such a different animal than other cancers that you will hear many people on this forum (and others) tell you that you should seek a sarcoma specialty cancer center. MD Anderson, Sloan in NY, Dana Farber, Mayo, and several others. I strongly urge you to make sure you are in a facility that deals with sarcomas. This is HUGE! It's one thing to feel comfortable with your doctor but it's also knowing that your doctor has every single available resource should something unique present itself. We sought local treatment at our Children's Hospital but for all the 2nd opinions and the major surgery our daugther had, we went to CHOP in Philly as the ortho oncologist was very well known. It was the best decision we made as I had comfort going to bed each night that I had given our daughter the opportunity to be in the best care we could find (and afford). My other advice is to truly be careful what you read on the internet. It's hard not too (I get it - been there done that). Every time I would bring up a research study to our oncologist or surgeon, it would be shot down with a "that doesn't apply - it is a study from another country and the standards are different.....or "that doesn't help this sutation at all......or that is not reputable.....or yes, that is a great study. I know all about it"...etc.) At the end of the day, all that matters is that your daughter is given the best opportunity to let medical advancements provide her the best outcome!

I wish you the very best of luck and know lots of prayers coming your way......

From one fighting warrior mom to another!

Melissa (mom to Emily, dx 11/11 with Ewing Sarcoma, 10 months of chemo, 1 radical surgery)

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Thank you Melissa for your thougths and prayers. Yes, we are warrior moms and fight to do everything we can
for our children. It took about 4 weeks post surgery to get the best "team" together for my daughter. I now
feel confident . It seems to be a waiting game for now...waiting for the radiation treaments to be completed and
waiting for the next MRI. I hope and pray for positive results!

Prayers to you and your daughter!

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You did the research you needed to do to find the oncologist you were comfortable with!

When my husband was diagnosed with his anaplastic astroblastoma, the oncologist who had appeared at the hospital said, "there is not much medical literature to follow." meaning .... there have not been many cases. He showed us the thick medical book - and there were only about 3 paragraphs about the cancer. The doctor who wrote those paragraphs was the doctor who identified our cancer.... at Johns Hopkins.... which is out of state. We didn't travel to Johns Hopkins, but the tissue sample did. It took WEEKS before our tumor had been diagnosed.

We then went on our oncologist search ... we preferred a NEURO oncologist since the cancer was rare enough. We did not have one in our area. Upon recommendations of physician family members ... we spoke to doctors at Tisch (Duke.) But we were not able to travel that far for that long. We also spoke to doctors at Hermelin (Henry Ford in Detroit.) I researched MD Anderson and NIH.

We felt comfortable with a neuro oncologist who recommended radiation only - no chemo.... at Hermelin Brain Tumor Center. He thought chemo was not warranted in this case ... and he has had experience with 3 cases.

After radiation, taste buds were effected for several weeks. Tomatoes and anything with tomatoes tastes metallic. Even tonight - 7 months post treatment - he could NOT eat the dinner I made tonight with tomato sauce! : ) He also had food cravings ... so .... when he really wanted a certain food - we got it for him. He lost his sense of taste - so eating was no longer pleasurable.... but he knew he had to eat. So he did - with minimal complaint. Spicy foods tasted good to him. He NEVER ate spicy foods before.

Have your daughter drink lots of water, make sure she exercises - walking is great, and try to drink green tea. Does she have a favorite place that makes her feel good? A lake? A park? Go there. She needs to FEEL GOOD . We found that cancer introduces such wonderful caring people. Grey is the color for brain cancer. My husband was upset that it wasn't a cooler color. He always scheduled his appointments for the morning .... and we went out for a quick breakfast after treatment .... before I dropped him off at his office.

Our 3 MRIs have been "clear." Our next one will be in March 2013. (however, we experience seizures with all of this ... so we continue on several anti-convulsant medications and we've had some small episodes. No biggie. Be sure to find your "new" normal each day. You can live a normal life during radiation - it's just a new normal.

I can't wait to tell my husband about you and your daughter. Congrats on your future nurse. We will pray for you and your daughter often! My husband kept his mask. He's goofy that way. Lots of laughter! He is so proud of his radiation "tattoo!" He thinks he deserves a motorcycle now. ha ha ha ha

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