Newly Diagnosed Anaplastic Oligodendroglioma Grade 3

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Newly Diagnosed Anaplastic Oligodendroglioma Grade 3

by fkirby on Sat Dec 30, 2017 03:59 PM

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Hi All,

My name is Fran and I am a newly diagnosed Grade 3 Analplastic Oligo on my frontal lobe. On Nov 1st of this year I suffered a seizure while asleep and was rushed to the ER where they divereted me to a trauma center ER.  By the time I could remember anything the removed a golf ball sized tumor from my brain. They reported about 95% removed and could not get the remainder since it was near the motor skills area of the brain.  I was discharged on the 6th and just finally started my radiation treatment (5days a week for 6 weeks) then it will be on to chemo (pill form 5day cycle for 12 months). We saw the neuro-oncologist just last week and decided we wanted to know a prognosis. My heart sank when I heard 18 to 24 months.  Not what I really wanted to hear.  Not sure why I am joining and writing on this board, but I thought maybe someone would understand what I am feeling right about now.  No one seems to understand and some people who know look at me with sympathy.  Just seems like my world crashed.

I hope to hear from others and maybe we can relate stories and the like.  So new to this, not sure where to turn or anything.

RE: Newly Diagnosed Anaplastic Oligodendroglioma Grade 3

by drgomez on Sun Dec 31, 2017 09:13 AM

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On Dec 30, 2017 3:59 PM fkirby wrote:

Hi All,

My name is Fran and I am a newly diagnosed Grade 3 Analplastic Oligo on my frontal lobe. On Nov 1st of this year I suffered a seizure while asleep and was rushed to the ER where they divereted me to a trauma center ER.  By the time I could remember anything the removed a golf ball sized tumor from my brain. They reported about 95% removed and could not get the remainder since it was near the motor skills area of the brain.  I was discharged on the 6th and just finally started my radiation treatment (5days a week for 6 weeks) then it will be on to chemo (pill form 5day cycle for 12 months). We saw the neuro-oncologist just last week and decided we wanted to know a prognosis. My heart sank when I heard 18 to 24 months.  Not what I really wanted to hear.  Not sure why I am joining and writing on this board, but I thought maybe someone would understand what I am feeling right about now.  No one seems to understand and some people who know look at me with sympathy.  Just seems like my world crashed.

I hope to hear from others and maybe we can relate stories and the like.  So new to this, not sure where to turn or anything.

Hi Fran,

Welcome to the forum and I am sorry you are going through this. I don't know much about the Anaplastic oligo since I have grade 2 oligo, but I have been on this forum for almost year and have read many stories. One thing I know is there are many people who have lived a lot longer than what your oncologist told you. 

There is one discussion started on this forum regarding the same tumor you have and you might want to read it. The stories are filled with positive messages, i will leave the link for you down below.

https://www.cancercompass.com/message-board/message/all,9350

RE: Newly Diagnosed Anaplastic Oligodendroglioma Grade 3

by drgomez on Sun Dec 31, 2017 09:17 AM

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RE: Newly Diagnosed Anaplastic Oligodendroglioma Grade 3

by ottoh on Sun Dec 31, 2017 09:21 PM

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Hi Fran. I know how depessing it is to hear your doctor give you their prognosis, but I'm here to tell you there are many more people who do much better than what their doctors say, my wife includes! This Christmas marks 2 years ago we discovered she had glioblastoma. She had surgery and it came back 6 months later to the same size. They told us that she had 4 to 6 months to live. We traveled from Duke university to M D Anderson to UCSF and back again to M D Anderson. She has been cancer free for the last year and a half. She went through the chemo and radiation after the first surgery. When it came back we looked into every clinical trials we could find. We ended up at MD Anderson in an immunol theropy trial. We have now seen and met, and heard of many people doing much better than their doctors have said they would. There are people on this board that have had surgery 30 years plus ago and are doing great! My wifes glio was in her right frontal lobe as well. My point is, there are many people who beat this and if you do research on this, starve the cancer of sugar, keep your blood alkalized, and oxygenate your blood, you too will have a good chance to beat it! It's tough, but with some help from friends and family, you and have a healthy and happy life. Don't give up! Stand and say, "challenge accepted!!" You can check out the CMV clinical trial at MD Anderson and the ALA-5 trial at UCSF, as that is what we did and every MRI has been clean since. Read some of the posts here for other clinical trials as well. There are new treatments coming to light evry day and they are working better than they ever have. If your doctor can't reccomend some of these trials, FIND A BETTER DOCTOR! You have a good chance to beat this! DO it! Our prayers are with you and may your courage carry you through this whole ordeal. God bless you and aloha.

RE: Newly Diagnosed Anaplastic Oligodendroglioma Grade 3

by eyegogo on Fri Jun 08, 2018 12:56 AM

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On ??? 30, 2017 3:59 ?? fkirby wrote:

Hi All,

My name is Fran and I am a newly diagnosed Grade 3 Analplastic Oligo on my frontal lobe. On Nov 1st of this year I suffered a seizure while asleep and was rushed to the ER where they divereted me to a trauma center ER.  By the time I could remember anything the removed a golf ball sized tumor from my brain. They reported about 95% removed and could not get the remainder since it was near the motor skills area of the brain.  I was discharged on the 6th and just finally started my radiation treatment (5days a week for 6 weeks) then it will be on to chemo (pill form 5day cycle for 12 months). We saw the neuro-oncologist just last week and decided we wanted to know a prognosis. My heart sank when I heard 18 to 24 months.  Not what I really wanted to hear.  Not sure why I am joining and writing on this board, but I thought maybe someone would understand what I am feeling right about now.  No one seems to understand and some people who know look at me with sympathy.  Just seems like my world crashed.

I hope to hear from others and maybe we can relate stories and the like.  So new to this, not sure where to turn or anything.

Hi, dear Fran: My wife was also diagnosed as a huge intraventricular AO grade lll mass last year. After surgery, she received CCRT (Chemotherapy combined radial therapy 5days a week for 6 weeks) and now on chemo (Temodal pill form 5day cycle for 6 months). She suffered skin itching and gastrointestinal upset every cycle. Did you took the same chemo pill (Temodal)? I am looking forward the immunotherapy clinical trial, but my doctor said Temodal was still the best choice. Expect hear your command Sincerely

RE: Newly Diagnosed Anaplastic Oligodendroglioma Grade 3

by Mack1994 on Mon Jun 18, 2018 06:39 PM

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On Dec 30, 2017 3:59 PM fkirby wrote:

Hi All,

My name is Fran and I am a newly diagnosed Grade 3 Analplastic Oligo on my frontal lobe. On Nov 1st of this year I suffered a seizure while asleep and was rushed to the ER where they divereted me to a trauma center ER.  By the time I could remember anything the removed a golf ball sized tumor from my brain. They reported about 95% removed and could not get the remainder since it was near the motor skills area of the brain.  I was discharged on the 6th and just finally started my radiation treatment (5days a week for 6 weeks) then it will be on to chemo (pill form 5day cycle for 12 months). We saw the neuro-oncologist just last week and decided we wanted to know a prognosis. My heart sank when I heard 18 to 24 months.  Not what I really wanted to hear.  Not sure why I am joining and writing on this board, but I thought maybe someone would understand what I am feeling right about now.  No one seems to understand and some people who know look at me with sympathy.  Just seems like my world crashed.

I hope to hear from others and maybe we can relate stories and the like.  So new to this, not sure where to turn or anything.

Hi Fran, definitly not the kind of news you want to hear.

I was diagnosed with oligodendroglioma grade 2 in October 1994, it was located in the right frontal lobe, they did a complete resection and I was progression free for 6 years with just the surgery.

In 2001 I had a seizure and MRI showed recurrence in the same area, I again had a total resection and was put on temodar 5day cycle for 12 months and was progression free for 10 years. 

In 2013 I had another seizure and had another resection, I opted out of radiation and chemo as I wanted to continue to work, and then again in 2016 my routinue MRI showed progression in the same area as previous progression had surgery again, however this time the pathology showed it was now an anaplastic oligo grade 3, I had 33 radiation treatments and I just finished 6 cycles of PCV, each cycle being 42days, my neuro-oncologist assures me that I will be progression free for multiple years, I confirmed this with second opinion.

Presently Iam experiencing the accumulative effects of the chemo, I am tired, weak and have no energy and have lost 30 lbs, it is going to take about 6 to 8 mos for me to fully recover, possibly a year, but I,m still here, had an MRI just two days ago and everything is all clear.

When I had my first recurrence and was put on temodar I was told I had maybe 3 to 5 years, well here I am at 63 years of age and retired. Don't get hung up on statistics, there are averages but people beat the averages all the time and advances in treatment are being made everyday, you can be hopeful for longevity and a good quality of life, I'm not saying it won't be without challenge or difficulty, I was told not to take a terminal view but a long term view of this disease.

I highly recommend you keep posting to this forum, there are alot of good people here as well as a lot of useful information.

I wish you the best going forward.

RE: Newly Diagnosed Anaplastic Oligodendroglioma Grade 3

by ljayr on Thu Jun 21, 2018 03:45 PM

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Hello,

This week was the first time I had even heard of the word Oligodendroglioma, so please forgive me for my ignorance in this cancer.  I'm sorry for what you are all going through.  There is just nothing good about cancer...it just stinks.  What I am wondering is what were your symptoms and timeline with your cancer?  My brother had a very rare sinus cancer (SNUC) last year, so I'm involved with a SNUC group as far as patients, survivors, caregivers, etc.  This week, one of the caregivers mentioned her family member had oligodendroglioma 16 years ago and recovered very well.  About a year ago, he received a SNUC diagnosis.  I've always wondered if my brother had some sort of brain cancer that eventually settled in his sinus area.  He didn't go to the doctor until the diagnosis of SNUC.  Would the medical team be able to know if he had oligodendroglimoa before sinus cancer?  Thoughts?  Feedback?  Thank you.

RE: Newly Diagnosed Anaplastic Oligodendroglioma Grade 3

by fkirby on Thu Jun 21, 2018 05:32 PM

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Hi ljayr,

No need to ask for forgiveness on the ignorance. No such thing when it comes to cancer. I am still trying to learn about the tumor and how to pronounce the darn thing.  I am not sure if there is any correlation between the oligodendoglima and the SNUC.  I will ask my neuro-oncologist when I see him next week.  I like hearing how its been 16 years since he was diagnosed with his.  It provides me hope that it can be a longer prognosis then what they gave,

RE: Newly Diagnosed Anaplastic Oligodendroglioma Grade 3

by fkirby on Thu Jun 21, 2018 05:42 PM

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Hi Mach,

I am sorry for what you are going thru also.  I too have been on the on chemo for 4 months and I know those effects very well.  The anti-nausea meds they gave me sometimes does not help.  My physical condition (also have disabilities from military service) and my mental functioning have led me to not be able to work so I am on SSDI which frustrates me since I liked being active. I had to give up a lot of social activities that I used to enjoy.  But on the plus side I know have such a greater relationship with my family and loved one and have made new friends thru the brain and spine tumor support group that I joined.  My next MRI is this Sunday and I will have it read on next Wednesday.

I read your note with great encouragement.  I have been living a terminal illness life for the last 5 months but you have encouraged me to take the long view of life.  While I would like to eventually go back to work, maybe I am destined for something different.  Thank you for the encouragement.  All the best to you too, Fran

RE: Newly Diagnosed Anaplastic Oligodendroglioma Grade 3

by fkirby on Thu Jun 21, 2018 05:48 PM

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Hi Eye,

Many apologies for the long lapse in responding.  No excuse.  Just have not been feeling like talking much. I am currently taking the Termadol pill. 4 pills 100mg x 5 days a month for 12 months. I am now going on my 5th cycle and I tell you it sucks.  Nothing worse than feeling like crap for 2 and a half weeks out of the month. By the time I feel normal again I have to start all over.  I have asked the DR about other options and he also said it was the best so I trust him.  How is your wife doing?  What trials is she going too?

Wishing you and her all the best.  Fran

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