Oligodendroglioma Grade Iii (Mixed Anaplastic)

My name is Patty and our son Taylor was diagnosed with his brain tumor June 13, 2007 2 months before he turned 15.  His will be 16 next month (August 26 ) and he was active in soccer, rode dirt bikes and loved to work on cars. Loves people and anyone who meets him leaves with a wonderful impression of him. 

He had a partial resection and 2 weeks later they placed a bi-lateral shunt in to drain the fluid.  Initial treatment was 42 days of Temdor and 6 weeks radiation. Our oncologist at All Children's Hospital in St Petersburg, Florida is working closely with Duke University.

He also was placed on Temdor 5 days on 23 days off.  We started this in September 2007 and were on this treatment until February 2008.  We showed growth so we stopped.   

Since the tumors are created with 2 components the cyst began to grow.  We had surgery Feb 13, 2008 where the doctors placed an Ommaya Resevouir to drain the fluid.  Removing the cyst is not an option; it WILL grow back. 

In March 2008 our doctors started my son on a new cocktail since the tumor grew 2cm. We are now on Avastin and Irinotecan which is administered via IV every 2 weeks.  We are on this protocal until March 2009.

For the most part my son has tolerated the drugs, he is tired alot, not as social as I knew him before.  Mostly due to the fact he was diagnosed between 8th grade (middle school) and 9th grade (high school).

Today (July 13 - ??) we are in the hospital with a serious infections called Serratia which developed around the Ommaya in his left side.  They also removed his shunts since it also developed an infection.  The doctors are hoping they do not have to put the shunts in and if so only one of them.

I know most of you are adults either husbands or wives; this type of tumor is rare in children. I am interested to know if anyone who is under the age of 20 who has been diagnosised with this type of tumor and if so how they are doing.

All I can personally say to everyone is keep the faith. Live your life.  We allow our son to live as normal a life as possible. He went dirt bike riding last month and he felt and acted like a normal kid for a week.  My family and friends are our rocks!!!  Reley on them!!!!

Keep the faith,

Patty, Rob, Taylor and Montana

I admire and respect your approach as parents in the face of this life altering situation. It sounds like your are receiving the best medical care and are surrounded by lots of supporting people. Your son is an inspiration to many I'm sure, and I can't help but think of myself at that age, a time when socially one is really starting to develop and connect with the outside world as an independent person. I will certainly keep hopeful thoughts for his sustained health and energy as you all continue on this journey. All of the best to you.

 

On 7/19/2008 TaylorsMoms wrote:

My name is Patty and our son Taylor was diagnosed with his brain tumor June 13, 2007 2 months before he turned 15.  His will be 16 next month (August 26 ) and he was active in soccer, rode dirt bikes and loved to work on cars. Loves people and anyone who meets him leaves with a wonderful impression of him. 

He had a partial resection and 2 weeks later they placed a bi-lateral shunt in to drain the fluid.  Initial treatment was 42 days of Temdor and 6 weeks radiation. Our oncologist at All Children's Hospital in St Petersburg, Florida is working closely with Duke University.

He also was placed on Temdor 5 days on 23 days off.  We started this in September 2007 and were on this treatment until February 2008.  We showed growth so we stopped.   

Since the tumors are created with 2 components the cyst began to grow.  We had surgery Feb 13, 2008 where the doctors placed an Ommaya Resevouir to drain the fluid.  Removing the cyst is not an option; it WILL grow back. 

In March 2008 our doctors started my son on a new cocktail since the tumor grew 2cm. We are now on Avastin and Irinotecan which is administered via IV every 2 weeks.  We are on this protocal until March 2009.

For the most part my son has tolerated the drugs, he is tired alot, not as social as I knew him before.  Mostly due to the fact he was diagnosed between 8th grade (middle school) and 9th grade (high school).

Today (July 13 - ??) we are in the hospital with a serious infections called Serratia which developed around the Ommaya in his left side.  They also removed his shunts since it also developed an infection.  The doctors are hoping they do not have to put the shunts in and if so only one of them.

I know most of you are adults either husbands or wives; this type of tumor is rare in children. I am interested to know if anyone who is under the age of 20 who has been diagnosised with this type of tumor and if so how they are doing.

All I can personally say to everyone is keep the faith. Live your life.  We allow our son to live as normal a life as possible. He went dirt bike riding last month and he felt and acted like a normal kid for a week.  My family and friends are our rocks!!!  Reley on them!!!!

Keep the faith,

Patty, Rob, Taylor and Montana

Hi Patty,  I too have an oligodendroglioma gr. 3 anaplastic~It started at the age of 43 as  low grade,  I'm now 58. I was told at two major universities that these tumors usually begin in childhood. Mine is in the left parital, occipital area of the brain.

In 1993  I had radiation and did fine for 9yrs. They now say chemo. should have been given first to save the radiation option. However I have survived well for this amount of time. I had two resections one in 2005 and the next in Feb. 2008. The first resection was more detailed and a larger debulking.I was awake for the proscedure and did brain mapping to see how far they were able to allow them to go without damage to vital areas 

The second surgery wasn't as severe, it was actually done suspended in an area between two buildings to avoid vibration. with the use of an MRI in a tunnel. I go to Memorial Sloan Kettering in NYC and have the chief of neurosurgery who I think is great.

I'm on a clinical trial called perifisoine, It's a molecular drug that sorounds the tumor and it attacks from the out side in. If you understand nanotherapy which I think I do and then as quick as a wink I'm confused.Maybe it could help you.understand it better.

I used to ba an excellent speller but sometimes I really screw up.

I have a daughter and son but the best is my three granddaughters and one grandson. Ages 11~10~7~and 2.

I do everything from driving ,Quad riding with family and friends  I"m loral desighner and will be doing a wedding this weekend. I gave up my floral shop to have more fun but still keep my hand in my daughters shop.

My husband works out of town three - four days a week and I like my independence.

I credit all my blessings to a great belief in God. Without Him I could not have come this far ~

If there is anything I can do I'd be happy to help.

Steohanie S

email- 

--Message edited by CancerCompass staff. For personal protection, email address removed. Consider private reply. Please review CancerCompass Member Guidelines at http://www.cancercompass.com/common/guidelines.html--

 

On 7/21/2008 Nena1197 wrote:

 

On 7/19/2008 TaylorsMoms wrote:

My name is Patty and our son Taylor was diagnosed with his brain tumor June 13, 2007 2 months before he turned 15.  His will be 16 next month (August 26 ) and he was active in soccer, rode dirt bikes and loved to work on cars. Loves people and anyone who meets him leaves with a wonderful impression of him. 

He had a partial resection and 2 weeks later they placed a bi-lateral shunt in to drain the fluid.  Initial treatment was 42 days of Temdor and 6 weeks radiation. Our oncologist at All Children's Hospital in St Petersburg, Florida is working closely with Duke University.

He also was placed on Temdor 5 days on 23 days off.  We started this in September 2007 and were on this treatment until February 2008.  We showed growth so we stopped.   

Since the tumors are created with 2 components the cyst began to grow.  We had surgery Feb 13, 2008 where the doctors placed an Ommaya Resevouir to drain the fluid.  Removing the cyst is not an option; it WILL grow back. 

In March 2008 our doctors started my son on a new cocktail since the tumor grew 2cm. We are now on Avastin and Irinotecan which is administered via IV every 2 weeks.  We are on this protocal until March 2009.

For the most part my son has tolerated the drugs, he is tired alot, not as social as I knew him before.  Mostly due to the fact he was diagnosed between 8th grade (middle school) and 9th grade (high school).

Today (July 13 - ??) we are in the hospital with a serious infections called Serratia which developed around the Ommaya in his left side.  They also removed his shunts since it also developed an infection.  The doctors are hoping they do not have to put the shunts in and if so only one of them.

I know most of you are adults either husbands or wives; this type of tumor is rare in children. I am interested to know if anyone who is under the age of 20 who has been diagnosised with this type of tumor and if so how they are doing.

All I can personally say to everyone is keep the faith. Live your life.  We allow our son to live as normal a life as possible. He went dirt bike riding last month and he felt and acted like a normal kid for a week.  My family and friends are our rocks!!!  Reley on them!!!!

Keep the faith,

Patty, Rob, Taylor and Montana

Hi Patty,  I too have an oligodendroglioma gr. 3 anaplastic~It started at the age of 43 as  low grade,  I'm now 58. I was told at two major universities that these tumors usually begin in childhood. Mine is in the left parital, occipital area of the brain.

In 1993  I had radiation and did fine for 9yrs. They now say chemo. should have been given first to save the radiation option. However I have survived well for this amount of time. I had two resections one in 2005 and the next in Feb. 2008. The first resection was more detailed and a larger debulking.I was awake for the proscedure and did brain mapping to see how far they were able to allow them to go without damage to vital areas 

The second surgery wasn't as severe, it was actually done suspended in an area between two buildings to avoid vibration. with the use of an MRI in a tunnel. I go to Memorial Sloan Kettering in NYC and have the chief of neurosurgery who I think is great.

I'm on a clinical trial called perifisoine, It's a molecular drug that sorounds the tumor and it attacks from the out side in. If you understand nanotherapy which I think I do and then as quick as a wink I'm confused.Maybe it could help you.understand it better.

I used to ba an excellent speller but sometimes I really screw up.

I have a daughter and son but the best is my three granddaughters and one grandson. Ages 11~10~7~and 2.

I do everything from driving ,Quad riding with family and friends  I"m loral desighner and will be doing a wedding this weekend. I gave up my floral shop to have more fun but still keep my hand in my daughters shop.

My husband works out of town three - four days a week and I like my independence.

I credit all my blessings to a great belief in God. Without Him I could not have come this far ~

If there is anything I can do I'd be happy to help.

Steohanie S

email- 

--Message edited by CancerCompass staff. For personal protection, email address removed. Consider private reply. Please review CancerCompass Member Guidelines at http://www.cancercompass.com/common/guidelines.html--

As I said I'm getting to be a terrible speller, but never my name.  It's         

      Stephanie~

 

Dear Stephanie,

My husband was diagnosed with Anaplastic Oligodendroglioma Grade 3 at the age of 45 on May 4, 2007.  It is located on the left frontal lobe.  He had surgery, did the 6 weeks of radiation with Temodar & just finished the one year Temodar program 5/28.  He is also working full time, riding his Harley, golfing, and pretty much doing everything he likes, with the exception of drinking beer.  I was inspired to hear how long you have had this and that your are still doing well.  This gives me hope my husband will also be able to live for many more years. 

 My family has owned and operated a flower shop since 1936.  My Dad is still in charge and I have worked there for 20 years.  I guess we kind of have alot in common.  Best wishes to you and thanks for sharing your story.

 

 

On 7/21/2008 Mullymax wrote:

Dear Stephanie,

My husband was diagnosed with Anaplastic Oligodendroglioma Grade 3 at the age of 45 on May 4, 2007.  It is located on the left frontal lobe.  He had surgery, did the 6 weeks of radiation with Temodar & just finished the one year Temodar program 5/28.  He is also working full time, riding his Harley, golfing, and pretty much doing everything he likes, with the exception of drinking beer.  I was inspired to hear how long you have had this and that your are still doing well.  This gives me hope my husband will also be able to live for many more years. 

 My family has owned and operated a flower shop since 1936.  My Dad is still in charge and I have worked there for 20 years.  I guess we kind of have alot in common.  Best wishes to you and thanks for sharing your story.

 

Hi,  Isn't email great!

 I'm happy to hear your hubby is doing well. Half the battle is not sitting in a corner with your thumb in your mouth.       

 I don't wish to misslead you, remember I said this tumor started as low grade and it took 9yrs to advance to a grade3

.His tumor is in a good location if there is such a thing.Is he on a lot of antisiezure meds? If you don't mind my asking how did you find out that he had a BT and what hospital do you go to, is it a major medical center?

Last week I had an appt. with my raid/onc. I told him I wanted to rewallpaper the kitchen but then I thought what for. We sat talking a long time and at the end of the visit he told me to go home and wallpaper.

It's amazing that you have a floral business, I loved it but it takes your life away. Hoildays are so busy it seemed they were for everyone but us. My daughter only does parties, weddings and other large events. The everyday business  and now gas prices have made it difficult for everyone.

We live on 18 acres with a fabulous view. I have too many perinal gardens. It's my best therapy,I can play and of course it's free. I do floral classes around Thanksgiving and Christmas at our local churches and they love it, I do too!

I enjoyed your email and hope in some small way I helped.

Good night,  Stephanie

Dear Stephanie,

I will send you a private relpy with all of our story regarding my husband's brain tumor.