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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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Hi @121861, welcome to Connect.
This must be so worrisome for you and your daughter. I'd like to connect you with @carolina2501. Her husband had laparoscopic surgery for a pituitary tumor and as a result of radiation has brain necrosis.
What symptoms is the necrosis causing for your daughter? What are the recommended treatments or course of action at this time?
Hi, I am latin, sorry about my english if it is not very well.
My husband is treating the necrosis with hyperbaric oxigen teraphy, it oxigents the blood and it has not side effects.
He is better with the memory and concentration. The necrosis is in the frontal lobe.
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1 ReactionMy daughters is in the frontal lobe as well .. I've never heard of this treatment ur husband is having ... How and where is he having it done and is it helping ? <br />
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It is helping a little bite that is more than nothing.<br />
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He is having at South Miami Hospital, but we now there are several place in<br />
the US with this treatment.<br />
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1 Reactionhttps://baptisthealth.net/en/facilities/south-miami-hospital/wound-care-hyperbaric-medicine/pages/default.aspx<br />
Thank you @carolina2501. What improvements have you seen with this treatment?
Here is further info on hyperbaric oxygen therapy from Mayo Clinic http://www.mayoclinic.org/tests-procedures/hyperbaric-oxygen-therapy/basics/definition/prc-20019167
I have had a recurrent brain tumor for 16 years and have had both standard radiation in 2007 and proton radiation in 2015 at Mayo Clinic. I've always been told exactly what you have, that it can be very difficult to determine if it is necrosis or tumor on the MRI. So sometimes they watch with serial MRI's to watch for tumor growth. The tricky thing with necrosis is that it can present with very similar symptoms as the tumor because they both take up unwanted space in the brain. I know sometimes they even opt to do surgery to debulk necrosis if it is causing a lot of unwanted symptoms. Hoping the best for your daughter!
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1 ReactionThank you , so comforting to hear that she is not alone . Do you mind if I ask what kinda of tumor you have . What treatment have you been through ? <br />
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My tumor is quite rare...it is an Anaplastic Pleomorphic Xanthoastrocytoma, or short form is Anaplastic PXA. Brain tumors always have to be such long names!! Besides my 5 surgeries and 2 different radiation treatments I was treated with Temodar, CCNU, PCV combination chemotherapy and Avastin. To say the least I have lots of experience in the brin cancer world, but have tolerated everything overall very well and would consider myself "healthy." I stay active and just keep Living Life! I hope your daughter can do that too!
Wow you have had a lot of experience . My daughter was diagnosed dec, of 2014... This is all new to us ,and very scarey . She is dealing with necrosis , so they think . Every time she gets taper off steroids she has a seizure and they put her back on them .. Seems she has been dealing with this since her surgery , I'm worried about what they can do for her .. Lately she has become so tired , I have a hard time getting her to do anything even though she says she doesn't feel bad . I have never heard of ur kind of tumor , it must b rare . What grade is ur tumor .. Sorry for all the questions , I'm just so worried . <br />
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