What's your Oligodendroglioma story?

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RE: What's your Oligodendroglioma story?

by Dodgerblue on Sun Apr 05, 2015 10:20 PM

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Anaplasitic Astrocytoma here, I did 6 months of monthly Temador.  My NO said there was no statistical advantage of 12 vs. 6 months.  I know a GBM survivor who is going 9 years and has been Temador that entire time.

Dodger

RE: What's your Oligodendroglioma story?

by gregoryfarns on Mon Apr 06, 2015 12:26 AM

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I have completed 16 rounds of Temador-5 days on at 440 mg and 28 days off. It's kept my oligo stage 2 at bay. It's inoperable-but the Temador actually shrunk it a bit! My last MRI showed no change. My doc said he would keep me on it for at least 18 months, then re-evaluate.

RE: What's your Oligodendroglioma story?

by pengi on Mon Apr 06, 2015 05:31 AM

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On Apr 05, 2015 8:30 PM trudig wrote:

Excellent news!  I didn't know you could go that long on Temodar regimens.  I was recently diagnosed with anaplastic oligodendroglioma whoIII and just completed six wks of radiation and daily Temodar 140mg.  I'm on my off month, with six 28-day cycles coming up (280 - 350mg dosage, 5/23 regimen).  I've always heard that the "standard" treatment for Temodar ended at one year.  Comments?

When I did Temodar, I did 24 28-day cycles. So 2 years. But I think I was able to go that long because I was just under 30 at the time.

RE: What's your Oligodendroglioma story?

by beentheredoneit on Mon Apr 06, 2015 01:51 PM

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Update on prior posts … Oligo first presented in April 2003 so surgery in July (had heart attack at same time as seizure hence the delay in surgery).  I was 52 at the time.  Tumor was in a location deemed inoperable.   But did have co deletions  (and later that I have the IDH1 mutation)…all good indicators.   I did 2years (24 cycles) of Temador in 2005… only side effect was constipation.   Periodic checks found no growth until mid -2014 (I was 63 at the time) when there showed some enhancement in the MRI.  I decided to have surgery in late Oct 2014.  Due to the over 10 years of advances in surgical techniques they were able to get most of tumor… I came in on Friday morning for surgery and was walking out of the hospital on Monday afternoon.    As I had done Temador we decided to go with radiation (Proton) in Dec 2014/Jan 2015.  I went through 33 treatments (33 days in a row)… bit a fatigue and some hair loss.   Waiting to see more on MRI post radiation but MRI done during surgery looked great.   I’ll likely retire and take it easy… except for the honey do list.

RE: What's your Oligodendroglioma story?

by TylerB on Wed Aug 12, 2015 06:39 PM

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Diagnosed senior year in college - 1999 - with an G3 AO. At that point I had my first surgery. In 2003 the cancer came back which led to a second surgery, 15 months of chemo and 33 rounds of radiation. In 2008 it came back a third time which meant a third surgery and 13 months of chemo. This past Obtober it came back a fourth time. While I opted against a surgery, I did start chemo up again. If all goes according to plan I'll finish up in January. Hard to believe at 38 I'm a four-time 15-year brain cancer survivor with what will soon be 40 months of chemo under my belt, three operations and 33 rounds of radiations. Just never give up. I've got a nine and  a seven-year old and I'm in training right now to run a mini-marathon in October. 

RE: What's your Oligodendroglioma story?

by MrBrightside on Thu Aug 13, 2015 02:42 AM

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Just an update to my story...

Diagnosed 5 years ago after huge seizure.  Had successful surgery to remove most if not all of tumor in left frontal.

Started to regrow last year and did 11 months of Temodar chemo.  Stabilized and stopped growing after finishing up.

Had two stable MRI's since in March and June.

Two weeks ago was getting a little run down and not as rested as I normally am.  Typically since my surgery when I am tired I get a muscular sensation in the general area of my surgery that feels almost like a novacaine shot.  My memory gets a little challenged around that time too.  This time we happened to be on vacation at the Jersey Shore and for the first two days the typical numbing sensation spread to my entire face and I kept saying "I didn't feel right" but I didn't expect anything to happen either. 

After the second night there I went to bed and 15 minutes later went into a gran mal seizure.  Was completely unconscious and went to the hospital in ambulance.  Ended up semi conscious briefly and then went into a second seizure.  During one of them I completely stopped breathing and turned blue.  My wife, children, and other family members on vacation with us thought I had died.  (I read about it in my daughter's journal a few days later - sigh). 

I'm doing better now.  The good news is the MRI shows nothing regrowing with the tumor which could have caused it.  I had been off seizure meds for a couple years.  Obviously back on them and will be for life.  Interesting that both my neuro-oncologist and general practictioner dr told me after this that lack of rest is one of the biggest factors in triggering a seizure in someone who is susceptable to them.  Funny they never mentioned this to me before despite on virtually every visit me mentioning that I get these crappy numb sensations in my head when I need more rest.   Lesson learned.

Other than that.  I'm still just slowly making my connections in my head again.  Was really having trouble concentrating in the days following and still struggle even now a couple weeks later.  But getting better. 

My advice to everyone out there is to give your body the rest it deserves and stay on your seizure meds even if the Dr says you don't necessarily need them.  Ever since my surgery I have been on a mad pace to get back to where I was before I had the surgery and make others not think of me as weak.  I also hear the tick tock of mortality that I didn't before, whether justified or not.  Like I am on a race to squeeze in everything I can as fast as I can with no regrets.  I have an exciting job and one that I can work as much and as hard as I want at.  I have a great family that I want to spend all the time I can with.  I have hobbies, such as teaching myself guitar that I started immediately after my surgery to help get myself going again that I love to do.  I want to do it all.  I need to accept that I can't DO EVERYTHING.  For my long term health I need to learn to accept this and get the rest I need.  I'm trying.  It's not easy.

Everyone be well and get your rest!  You deserve and need it and your family needs you around!

Be well. 

RE: What's your Oligodendroglioma story?

by baines115 on Wed Aug 19, 2015 01:14 PM

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My oligodendroglioma was on the right frontal side. I has affected my left side.  It will be 7 years this September since my surgery.  My husband and I know that there isn't anything we can do to prevent bad things from happening but we keep our faith in God that he will only give what we can handle.  We have wonderful friends and a great church family.  I continue to get MRIs every 6 months and meet with my neurosurgeon.  I continue to pray for all of who deal with cancer.

May God Bless You

RE: What's your Oligodendroglioma story?

by yamimar on Sat Aug 22, 2015 01:55 AM

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This is a story about my beautiful, brave and kind-hearted sister who battled over for 14 years with a brain tumour and sadly died last 10th August. After being woken up by an unexpected seizure, she was diagnosed with an Oligodendroglioma grade 2 on her left frontal lobe in May 2001. She was 29 at the time. her son was 5, Her husband was not supportive of her condition and two years later they divorced. My sister and all my family live in Colombia (where I am from) and I live in the UK. I have never been to any medical appointments with my sister and all the information I know is what my parents convey to me or what I have read in the medical notes. My sister had three craniotomies, the first in 2001 (as soon as her tumour was discovered followed by radiotherapy), then another in 2008 (after an MRI revealed the tumour was growing and she was starting to have more seizures and speech problems) and the last one in September 2013 (again she started to experience more problems with her balance, speech issues, short term memory and more seizures). Throughout the time my sister had the first two operations she was able to live her life as independent as possible, although unable to work and having anti seizure and other medications (don't know exact name) with up and downs along the way but she was adamant to carry on leaving in her own place taking care of her son as much as she could. After the last operation in 2013 her tumour was diagnosed as oligoastrocytoma grade 3. She was offered chemotherapy but choose not to have it and have alternative medicine instead. Sadly her condition gradually deteriorated and she past away last 10th August.

RE: What's your Oligodendroglioma story?

by yamimar on Sat Aug 22, 2015 02:03 AM

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This is a story about my beautiful, brave and kind-hearted sister who battled over for 14 years with a brain tumour and sadly died last 10th August. After being woken up by an unexpected seizure, she was diagnosed with an Oligodendroglioma grade 2 on her left frontal lobe in May 2001. She was 29 at the time. her son was 5, Her husband was not supportive of her condition and two years later they divorced. My sister and all my family live in Colombia (where I am from) and I live in the UK. I have never been to any medical appointments with my sister and all the information I know is what my parents convey to me or what I have read in the medical notes. My sister had three craniotomies, the first in 2001 (as soon as her tumour was discovered followed by radiotherapy), then another in 2008 (after an MRI revealed the tumour was growing and she was starting to have more seizures and speech problems) and the last one in September 2013 (again she started to experience more problems with her balance, speech issues, short term memory and more seizures). Throughout the time my sister had the first two operations she was able to live her life as independent as possible, although unable to work and having anti seizure and other medications (don't know exact name) with up and downs along the way but she was adamant to carry on leaving in her own place taking care of her son as much as she could. After the last operation in 2013 her tumour was diagnosed as oligoastrocytoma grade 3. She was offered chemotherapy but choose not to have it and have alternative medicine instead. Sadly her condition gradually deteriorated and she past away last 10th August. My sister never gave up and battled till her last breath. To all of you going through this journey at the moment, never, never give up. God bless you all.

RE: What's your Oligodendroglioma story?

by KerryAJ on Mon Sep 28, 2015 02:52 PM

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Hi my name is Kerry, I live in Alberta Canada and I was diagnosed with Oligo in 1992; I had surgery.   The Neurologist at the Tom Baker Cancer Center in kept telling me it would come back in 5 years, and if it did I would have to have treatment  The Drs. didn't know much about it so they just kept an eye on me with MRI's, then after 10 years they let me go.  The cancer came back in 2007 when I had a second surgery.  I was a Grade 2 the first time but now it is more aggressive at a grade 3.  So it took 15 years to come back, Drs. don't know everything, just stay positive and enjoy life.  I was also told all these things that might happen when I had radiation (mouth sores etc) but I didn't get any of them, I was also told I would have to wear a hat for the rest of my life, but with the right hair cut no one knows about my sparse patch of hair.  I notice that I have a bit of trouble with memory, but I can hold a job, so it mustn't be that bad.    I found that after my second surgery in 2007 I watched a lot of funny shows and laughed lots.  I also did lots of meditation and imagery; imagining that my T Cells were killing the cancer cells, and that the Macrophages cleaning up after them.  I did not have any swelling from dead tissue. I do not have any Astrocytoma cells in my cancer.  It is pure Oligodengroglioma in my right frontal lobe.  I was 31 when I was first diagnosed and recently turned 54.  Good luck everyone, I hope my story gives you some hope.

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