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helendee
@helendee

Posts: 3
Joined: Feb 07, 2017

It all started with a pilocytic astrocytoma...

Posted by @helendee, Feb 7, 2017

Hello. Twenty-five years ago my son had a pilocytic astrocytoma completely removed from his left parietal lobe – Grade 1 benign. He was 14 years old. Doctors said it was all gone, that was the end of it, no further treatment was necessary. One year ago (my son is now 41) he had a seizure at work and MRI showed a lesion in the left parietal lobe at the site of the earlier surgery. We have had a nightmare year. the diagnosis has gone from Grade 1 to Grade 4 to “atypical, unusual, “rare-we just don’t know a lot about these.” He had the tumor removed (99%) one year ago, followed by six months of radiation and chemo. All MRIs this past year looked great – then at the one year mark, MRI showed a regrowth right at the edge of the surgical site. That’s where we are right now.

We are at a hospital in NYC that has done genetic testing on the tumor – as per my son’s neuro-oncologist, “It doesn’t behave like a Grade 4 and it doesn’t have some of the genetic markers. It does have a high proliferative index. That’s what has them all in a tizzy…yet it took a full year to return. The tumor that was removed had no necrosis, no microvasciular proliferation and surgeon saw no infiltration. In the OR he thought it was benign.

I have done so much research on pilocytic astrocytomas in the last year and I know they are truly unique tumors that present in many different ways. Nevertheless, we are all confused and must now figure out what to do about this regrowth.

Twenty-five years asymptomatic…

REPLY

Welcome to Connect, @helendee.
I’d like to introduce you to fellow members who are talking about pilocytic astrocytoma. Please meet @cleahy85 @rossam @markelia @steveninkc @lynda1992. You can learn more about them in this discussion:

– Has anyone been diagnosed with a pilocytic astrocytoma as an adult? http://mayocl.in/2lmRVVZ

Helen, Should you wish to consider a second opinion from experts at Mayo Clinic, please call any of our 3 campuses, http://mayocl.in/1mtmR63. You will be offered an appointment within 48 hours Be sure to mention the Brain Tumor 48-access program.
Has the tumor been confirmed as benign? What further treatment options are being considered? I can imagine that all of you are confused and probably quite frightened as well. We’re here to listen.

@colleenyoung

Welcome to Connect, @helendee.
I’d like to introduce you to fellow members who are talking about pilocytic astrocytoma. Please meet @cleahy85 @rossam @markelia @steveninkc @lynda1992. You can learn more about them in this discussion:

– Has anyone been diagnosed with a pilocytic astrocytoma as an adult? http://mayocl.in/2lmRVVZ

Helen, Should you wish to consider a second opinion from experts at Mayo Clinic, please call any of our 3 campuses, http://mayocl.in/1mtmR63. You will be offered an appointment within 48 hours Be sure to mention the Brain Tumor 48-access program.
Has the tumor been confirmed as benign? What further treatment options are being considered? I can imagine that all of you are confused and probably quite frightened as well. We’re here to listen.

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Hello Colleen,It was confirmed as benign in 1989.  The tumor that returned at the same place in Dec. 2015 was called Grade 4 despite several benign characteristics.  After a year of treatment it appears that there is now a small recurrence at edge of surgery site.  Treatment options are to 1) remove 98% of recurrence 2) follow with clinical trial med

@colleenyoung

Welcome to Connect, @helendee.
I’d like to introduce you to fellow members who are talking about pilocytic astrocytoma. Please meet @cleahy85 @rossam @markelia @steveninkc @lynda1992. You can learn more about them in this discussion:

– Has anyone been diagnosed with a pilocytic astrocytoma as an adult? http://mayocl.in/2lmRVVZ

Helen, Should you wish to consider a second opinion from experts at Mayo Clinic, please call any of our 3 campuses, http://mayocl.in/1mtmR63. You will be offered an appointment within 48 hours Be sure to mention the Brain Tumor 48-access program.
Has the tumor been confirmed as benign? What further treatment options are being considered? I can imagine that all of you are confused and probably quite frightened as well. We’re here to listen.

Jump to this post

med BBI608 3) treat with one of targeted meds that attack mutations in my son’s tumor.  He had genetic testing done on tumor.We are petrified and very confused.Thanks.

@helendee, how are you and your son doing?

Hello. Twenty five years ago, I also had a piloyctic astrocytoma removed. I was 29 years old at the time. Mine was located in a lateral ventricle. Grade 1. Benign. A doctor at Mayo Clinic was able to remove the entire lesion, so I didn’t require any additional treatment(s). Was taken off all seizure medication in 1994. Out of the blue, I had a grand mal seizure, at work, three years ago. What? Why? I don’t get it! I’ve had two more sense. I was afraid my tumor had come back. After seeing some local neurologists, I ended up going back to Mayo Clinic. After 3 days of tests, the only answer I was given was head trauma, brain surgeries and scar tissue. I’m still in search of a better answer. So far, I’ve been unsuccessful. Mean while, I’m stuck taking seizure medication, again.

I understand what you are going through. Just hearing the word “brain tumor” is scary enough. Let alone when it’s you or someone you love. Doctors don’t know enough about them, so they’re not able to give you the answers you’re looking for. We, the patient or caregiver, need to keep fighting. Your son and I are both in unchartered territory. How many patients are still alive 25 years after having a brain tumor removed? Stay strong. Keep up the research. Be there for your son.

My prayers are with your son, you and your entire family.

Oh my! I will begin praying for David and your family. My daughter was diagnosed with. Pilocytic astrocytoma Grade 2, July 2016 and due to the location it is inoperable. She is now 20 yrs old and we simply are watching it and praying that God will remove it. She has an MRI every 3 months as we monitor it. Going from a Grade 1 to a Grade 4 is my biggest fear. Please keep us posted as I will be praying.

Hello, my prayers are with you and your son. How is he doing? My son, 2 years ago at 15 years old (now 17 and will be 18 in October) also had a seizure at school (March 2016) and a month later removal of a pilocytic astrocytoma in the left parietal. He was back at band camp 2 months later and now doing wonderfully. We have had follow up MRI's and everything looks good so far. We will have another this month. Not a day goes by that we do not think about how scary it was going through that and what the future might hold. He is still on Keppra and is trying to taper down the prescription. I would like to hear your updates and another others here with their stories.
All my best and prayers,
Tammy & Aidan, Texas

@tdavistexas

Hello, my prayers are with you and your son. How is he doing? My son, 2 years ago at 15 years old (now 17 and will be 18 in October) also had a seizure at school (March 2016) and a month later removal of a pilocytic astrocytoma in the left parietal. He was back at band camp 2 months later and now doing wonderfully. We have had follow up MRI's and everything looks good so far. We will have another this month. Not a day goes by that we do not think about how scary it was going through that and what the future might hold. He is still on Keppra and is trying to taper down the prescription. I would like to hear your updates and another others here with their stories.
All my best and prayers,
Tammy & Aidan, Texas

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Welcome to Connect, @tdavistexas. So good to hear your son's and family's story. I can imagine that one never loses that feeling of "could it happen it again" and what the future might hold. It really does help to hear from others. It would appear that @markelia's daughter and your son share a similar timeline. It must be reassuring to read Linda's story.

How often does your son have follow-up MRIs?

@lynda1992

Hello. Twenty five years ago, I also had a piloyctic astrocytoma removed. I was 29 years old at the time. Mine was located in a lateral ventricle. Grade 1. Benign. A doctor at Mayo Clinic was able to remove the entire lesion, so I didn’t require any additional treatment(s). Was taken off all seizure medication in 1994. Out of the blue, I had a grand mal seizure, at work, three years ago. What? Why? I don’t get it! I’ve had two more sense. I was afraid my tumor had come back. After seeing some local neurologists, I ended up going back to Mayo Clinic. After 3 days of tests, the only answer I was given was head trauma, brain surgeries and scar tissue. I’m still in search of a better answer. So far, I’ve been unsuccessful. Mean while, I’m stuck taking seizure medication, again.

I understand what you are going through. Just hearing the word “brain tumor” is scary enough. Let alone when it’s you or someone you love. Doctors don’t know enough about them, so they’re not able to give you the answers you’re looking for. We, the patient or caregiver, need to keep fighting. Your son and I are both in unchartered territory. How many patients are still alive 25 years after having a brain tumor removed? Stay strong. Keep up the research. Be there for your son.

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Hi Lynda,

I had the same type of tumor removed three years ago, and it is looking like I may be on anti-seizure medication indefinitely. Not that this is the situation with everyone, but I made the transition from Keppra to lamotrigine, and I am liking that a lot better. Keppra made me more irritable and tired.

@kmr3

Hi Lynda,

I had the same type of tumor removed three years ago, and it is looking like I may be on anti-seizure medication indefinitely. Not that this is the situation with everyone, but I made the transition from Keppra to lamotrigine, and I am liking that a lot better. Keppra made me more irritable and tired.

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Hi kmr3,

Glad to hear you're doing since switching medications.

When I had that seizure a few years ago, I was put on Keppra, too. It did not agree with me! Being irritable & tired to name just a few problems…. My doctor put me back on phenobarbital. (I was taking that drug before my surgery.) I'm on a low dose, but it seems to be working. So many of these seizure drugs can make you feel like a zombie. Like after I get home for work, I'm exhausted. If I don't keep moving, I'm worthless! What about you?

@lynda1992

Hi kmr3,

Glad to hear you're doing since switching medications.

When I had that seizure a few years ago, I was put on Keppra, too. It did not agree with me! Being irritable & tired to name just a few problems…. My doctor put me back on phenobarbital. (I was taking that drug before my surgery.) I'm on a low dose, but it seems to be working. So many of these seizure drugs can make you feel like a zombie. Like after I get home for work, I'm exhausted. If I don't keep moving, I'm worthless! What about you?

Jump to this post

Early afternoon is my time for exhaustion. Even caffeine doesn’t help! But moving around does seem to help.

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