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Recurrent anaplastic oligoastrocytoma or necrosis?
I am new to the group. My 28 year old daughter had been dx with anaplastic ogioastrocytoma 3 . She has had surgery , proton radiation and temadar . She is now dealing with necrosis, but it's difficult for them to be absolutely positive it's necrosis and not tumor growing back.. Was wondering if anyone else has dealt with necrosis ?
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I have had 3 grand mal seizures and continued simple focal or partial seizures too. I will be on seizure meds for life. Seizure meds and seizures can be quite tiring in themselves. But, they also say it takes a good year to fully recover after surgery...than you add treatment on top of it. It all takes time. Find things she likes to do and can be passionate about.
My tumor started as a grade 2 but progressed to grade 3. I was able to work full time thru the Temodar treatment and part time with CCNU treatment.
I understand you are scared but there are so many amazing treatment breakthroughs coming out now and in the near future that you really should remain hopeful. Is she being treated at a major Cancer center?? Never be afraid to get a second or third opinion. I am treated at Mayo Clinic in MN.
My daughter is being treated in st.louis at siteman cancer center . We went to Houston for an opinion and they wanted to operate but her surgeon doesn't want her having anymore surgeries . I've been looking into mayo in MN , she has a MRI end of April , I thinking we will try to go after that . Do you like mayo ?<br />
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I love Mayo and feel very privileged they are in my home state. They have been ranked #1 in Neurology and Neurosurgery for 20 years by US News and World Report! Impressive! I can tell you that the most important thing for a brain tumor patient and outcome is the skill of their neurosurgeon. When my tumor recurred initially I was told to have gamma knife because my local neurosurgeon did not feel comfortable resecting my tumor...I had a second opinion at Mayo Clinic and they felt confident they
could do surgery. I have been with them ever since and have no regrets! They truly get you in as timely as they can, they have all the specialties under one roof and to quote many other patients experiences..."they run like a well-oiled machine." I typically get my MRI, labs and results and treatment plan with my doctors all in one day! When presidents and dignitaries from all over the world go there for care...you really can't go wrong. The Dahlai Lama was just there last month!! If you are seriously thinking about having her seen there maybe you should inquire, sooner than later, before her next MRI and just have it done there. Just a thought... I have heard MD Anderson in Houston is very reputable too, but sounds like you've been there. They make it pretty easy for a self referral or to request an appointment on the Mayo site.
site. Good Luck!!!!
One more thing I wanted to ask you .. Have you had necrosis? And if you did how did they treat it ? Thank you so much for all your knowledge .. Talking to someone going through it helps a great deal .. So awesome to hear good news about Mayo .. I know for sure we will be going there for an opinion . Wish you lots of great health in the future.. <br />
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1 ReactionThank you~I'm glad I've been able to help. I really only had minimal necrosis and it was cleared with surgery upon tumor recurrence. If you can find a brain tumor support group in your area it might also be helpful for you and your family to see people "living" with brain
tumors.... I personally have found it to be very helpful. Always good to know you aren't alone! Best of luck to you as well!
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2 Reactions@audrapopp
Has your tumor shrank since you chemo? Or have you been cleared of no signs of tumor?