Anaplastic Oligodendroglioma

Hi, I was recently diagnosed with a brain tumor and had successful surgery to remove the tumor. I've been consulting with the neuro-oncologist at Sloan Kettering. He has suggested that for my tumor (Grade III Anaplastic Oligodendroglioma) I can either take temodar (probably upto 1-2 years) or take part in a clinical trial that has 6 months of temodar followed by intensive chemotherapy and a autologous stem cell transplant. Any suggestions if the clinical tiral is worth it? or the temodar alone works well?

On 10/13/2009 ash123 wrote:

Hi, I was recently diagnosed with a brain tumor and had successful surgery to remove the tumor. I've been consulting with the neuro-oncologist at Sloan Kettering. He has suggested that for my tumor (Grade III Anaplastic Oligodendroglioma) I can either take temodar (probably upto 1-2 years) or take part in a clinical trial that has 6 months of temodar followed by intensive chemotherapy and a autologous stem cell transplant. Any suggestions if the clinical tiral is worth it? or the temodar alone works well?

Hi Ash, I was dx Oligo II 2007 I did the year of Temodar and it held things stable actually shrunk the tumour a bit.  Last monitoring MRI showed a bit of activity so I am doing radiation and low dose temo daily.  My tumour is in a location that does not give me any huge profound symptoms such as seizures or paralyses (so far) and has not really effected what I do or don't do.  I count myself very lucky.  Clinical trials can be a big decision.  How urgent is your situation? Dont get me wrong this stuff is not good no matter what, but how is your quality of life at the moment? Try to take everything into account.  What I have learned so far about Oli is that it is a slower more indolent form of cancer.  I think if in life we have to have a brain tumour this is the one you want.  Seek the best medical care that you can, someone you trust and are comfortable with, who will answer your questions.  Have Faith and Fight.

 

Best of luck, God bless

Conrad

Hi Conrad, My tumor was in the left front lobe so i didn't have symtoms that were too bad. I had headaches and then double vision which prompted me to go to the doctor. The only thing is that the tumor is close to the optic nerve and that is why i would like to avoid radiation (also due to any side effects). My quality of life has been good so far. I am able to function normally. Haven't started work yet as i'm weighing the treatment options. The doctor said that doing the clinical trial would significantly reduce the chance of recurrence or even eliminate it. However the process is daunting. Thanks for your help and comforting words, Ash

I have a friend, late twenties, who was diagnosed with oligodendroglioma last year. He had surgery and then a course of daily radiation for a month and there is no sign of cancer at this point. Throughout all treatment he followed an alternative protocol as well, which included daily lypo-spheric vitamin C, and special diet and supplementation... If anyone is interested in learning a bit about his protocol here are several links which I hope will be helpful.... Presentation by DR. JEANNE WALLACE http://video.google.com/videoplay?docid=-8203376527577997655 ..... Presentation to the 35th Annual Cancer Convention by DR. THOMAS LEVY...skip down to the four part video .... http://www.tomlevymd.com/video/video.html

Please be aware that the response from Conrad is really less relevant than you might think.  His is a grade 2 which is considered low grade.  Yours is anaplastic grade 3, considered high grade and malignant.  His treatment would be much different that yours and certainly more aggressive because of the higher grade diagnosis.

 

On 10/13/2009 ash123 wrote:

Hi, I was recently diagnosed with a brain tumor and had successful surgery to remove the tumor. I've been consulting with the neuro-oncologist at Sloan Kettering. He has suggested that for my tumor (Grade III Anaplastic Oligodendroglioma) I can either take temodar (probably upto 1-2 years) or take part in a clinical trial that has 6 months of temodar followed by intensive chemotherapy and a autologous stem cell transplant. Any suggestions if the clinical tiral is worth it? or the temodar alone works well?

Hey Ash,

 

I have the same tumor and am @ Sloan also. Matter of fact I'll  be there Friday for some treatment that seems to be working at this point.

Discuss with your Neuro-oncologist as to what may work better, I did Temodar for awhile and it was great! I race mountain bikes and on the ninth run of that a silver was earned @ masters world championships in BC.(forgot to tell them that racing did not stop)

After this upgrade to stage III we tried Temodar monthly again but it was different so Carmustine was tried for two runs, worked on the first run and grew fast on the second. Did the daily Temodar and my brain must have been used to it, stopped working in my case but that has incredible results for many.

Started Avastin two weeks ago and it seems to be doing something, ridng this season has been lame and racing has been very slow. I was having trouble talking a few weeks ago and petit malls were becoming an issue. That has pretty much dissapeared, so hopefully i'll be back on the bike full time for next season. Can't go anywhere too soon, I owe too much money. Keep you in my thoughts and prayers.

Michael

http://oweracingmylife.blogspot.com/

 

Hey Michael, It was good to hear from you. The doctor has told me that the clinical trial is the best way to go, so i'm leaning towards that. Good to know that you're back to biking. Hopefully all turns out well for us. Take care, Ash

On Oct 13, 2009 12:00 AM Conrad wrote:

On 10/13/2009 ash123 wrote:

Hi, I was recently diagnosed with a brain tumor and had successful surgery to remove the tumor. I've been consulting with the neuro-oncologist at Sloan Kettering. He has suggested that for my tumor (Grade III Anaplastic Oligodendroglioma) I can either take temodar (probably upto 1-2 years) or take part in a clinical trial that has 6 months of temodar followed by intensive chemotherapy and a autologous stem cell transplant. Any suggestions if the clinical tiral is worth it? or the temodar alone works well?

Hi Ash, I was dx Oligo II 2007 I did the year of Temodar and it held things stable actually shrunk the tumour a bit.  Last monitoring MRI showed a bit of activity so I am doing radiation and low dose temo daily.  My tumour is in a location that does not give me any huge profound symptoms such as seizures or paralyses (so far) and has not really effected what I do or don't do.  I count myself very lucky.  Clinical trials can be a big decision.  How urgent is your situation? Dont get me wrong this stuff is not good no matter what, but how is your quality of life at the moment? Try to take everything into account.  What I have learned so far about Oli is that it is a slower more indolent form of cancer.  I think if in life we have to have a brain tumour this is the one you want.  Seek the best medical care that you can, someone you trust and are comfortable with, who will answer your questions.  Have Faith and Fight.

 

Best of luck, God bless

Conrad

Hi,

I am a 61 year old female that was diagnosed with  a brain tumor February 2009.  I had a resection of the tumor done in March.  The pathology report came back as Phase III Anaplastic Oligodendrogliona.  The tumor was very large and on the right temporal lobe.  It involved a lot of optic nerves, and I do have vision deficit (no periphial vision on the left side of both eyes)  Of course, this means no more driving and loss of independence.  Even when out with someone, I have to be watched because I am constantly running into something or someone on my left!  The way the tumor was found was quite a story.  My husband insisted that I go for a sleep study last January, and because I was showing some signs of what they called "Parkinsonion symptoms", the neurologist ordered a full EEG of my brain.  It showed some unusual patterns, and they ordered an MRI in February, followed by the usual CAT, PET, Cranial Angeogram, etc.  The final diagnosis was that I had a large tumor and surgery was still an option.  I was having headaches that started to get worse about 6-8 months prior to surgery; but I thought they had something to do with my sleep apnea. 

About three weeks after surgery I was put on radiation therapy and Temodor for 7 weeks.  I finished that on June 15th.  It was very difficult, especially toward the end and immediately following the treatments.  I was hospitalized twice because I kept falling, and had a lot of memory loss.  It took a couple of months to start feeling somewhat normal again.  I'm doing pretty well now, and all tests MRI, CT scan have shown no new growth; no shrinkage of what was left of the tumor, but I'll take the good news of no new growth.  I will start back on Temodor in December and be on that regimin for 6 months.  I'm sure I am like the rest of you, doing what I can, but still "waiting for the other shoe to drop"  It certainly has been a life changing event, but that is not all bad either.

Keep praying, be thankful for any good news, and live each day to the fullest.

F