Share this:
121861
@121861

Posts: 7
Joined: Mar 11, 2016

Recurrent anaplastic ogioastrocytoma or necrosis?

Posted by @121861, Mar 10, 2016

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 ?

REPLY

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.

@carolina2501

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.

Jump to this post

My 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 ?

@carolina2501

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.

Jump to this post

It is helping a little bite that is more than nothing.

He is having at South Miami Hospital, but we now there are several place in
the US with this treatment.

@carolina2501

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.

Jump to this post

https://baptisthealth.net/en/facilities/south-miami-hospital/wound-care-hyperbaric-medicine/pages/default.aspx

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!

@audrapopp

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!

Jump to this post

Thank 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 ?

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!

@audrapopp

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!

Jump to this post

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 .

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.

@audrapopp

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.

Jump to this post

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 ?

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!!!!

@audrapopp

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!!!!

Jump to this post

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..

Thank 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!

Please login or register to post a reply.