What's your Oligodendroglioma story?

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RE: What's your Oligodendroglioma story?

by SOTOSOL on Thu Jan 22, 2015 11:17 AM

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Hi i ahave also oligo ii since 2007 .I HAD SURGERY AT 2013 AND SINCE THEN I AM OK.I don t agree with anybody that say how many years we are going to live because everybody we are difference.My Dr tald me that i am going to live for ever with my oligo ha ha ha.so what i use to live with this as a part of my body. Maria

RE: What's your Oligodendroglioma story?

by gregoryfarns on Thu Jan 22, 2015 08:11 PM

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I just finished my 13th round of Temodar-440 MSG per day, 5 days-for my oligo stage 2. I'm doing really well-it has actually shrunk the tumor a bit. Our goal was to keep it at bay-so I'm pleased with the results! All is well!

RE: What's your Oligodendroglioma story?

by pengi on Tue Jan 27, 2015 06:08 AM

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On Dec 28, 2014 7:54 PM Cynthialynn wrote:

On Mar 31, 2011 2:31 PM jefuchs wrote:

I've been angry at the medical community for publishing dire numbers for oligodendroglioma survival.  All of the medical websites I've seen tell me that the average survival for grade II is 10 years, and the average for grade III is 3.5 years.

It has become apparent that they've scared the bejeezes out of us beyond proportion.  For nearly a year and a half I've been seeking out other oligo patients (I'm not one myself, but my wife is), and every one I've found has beat the "average" by many years.  By contrast, regular readers here have seen many GBM stories that seem to mirror the official life expectancy pretty closely.

So, not finding even a single case that comes close to the published expectations. I want to know if you guys have seen anything different than I have.

Let me know your (or your loved one's) year of diagnosis, and how they're doing.  If you know someone who has actually died of this, please share the story.

My wife was diagnosed in November 2009, and is still on Temodar, and doing very well.

I was diagnosed with a combination brain cancer of OligoAstrocytoma stage III last September.  I went through surgery, radiation and chemo.  My doctor at UCSF gave me specific details of survival rate of people with my type of cancer.  30% have survived only 3 years while 70% are still alive after 10 years.  Statistics are not given after 10 years because recorded information does not extend any further.  These statistics are strictly based upon my type of cancer-OligoAstrocytoma.  Your wife's statistics should actually be a bit higher because Oligodendroglioma is wayyyy slower/less severe than Astrocytoma.  These statistics strictly apply to patients with the 1p 19q codeletions (which is what I have).  The survival rate also has a number of factors that determine it such as the following: patient's age, amount of tumor removed, location of tumor, health prior to diagnosis, tumor reaction to radiation, tumor reaction to chemo, time period of chemo.  From my point of view:  I am 32 years old.  I had 99% of my brain tumor in the left temporal lobe removed.  My 6 1/2 weeks of radiation made my 1% tumor shrink even more.  My 1 year of chemo pills has caused the remaining 1% cancer to be invisible in MRI scans.  I am just emphasizing that there are many factors that play a part in survival rate.  So cannot really go by recorded statistics only.  Best of luck to you!           

My dad was diagnosed with an Oligo-Astrocytoma in 1996 with the co-deletions. He didn't have radiation back then, just surgery and chemo. He would run marathons and kept to the diet mentioned earlier by Shariv, as explained in the movie Forks over Knives.

Then, after my mom died four years ago, he moved to St. Louis where it was harder to stick to the diet, surrounded by meat-eaters. So he decided it was okay to allow himself to eat sausage on occassion with his friends. However a couple of years ago, they found progression in the tumor that had been dormant for 17 years. He had surgery, radiation and temodar. Needless to say, he is back on the diet!

As for me - I've developed a reaction to the gadolinium contrast dye they use for MRIs. So now I have to pre-medicate with Predisone and Benadryl every scan. It's a hassle - but I'm doing well otherwise!

RE: What's your Oligodendroglioma story?

by sweetpea73 on Wed Jan 28, 2015 03:55 AM

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Hi Maria,

Thans for your post - I was diagnosed in Nov2012, with oligo grade 4- my doctor just recently stated prognosis would be 3-5 years if lucky up to 10? Seriously - I have to much to live for, I dont want to be a statistic. Wish mine had a lighter attitude - I will have to start looking for someone else - my doc is kind of dreary. I am excited to finally see someone doing well after 8 years. Do you follow any particular diets or anything?

RE: What's your Oligodendroglioma story?

by TaraMac on Fri Feb 06, 2015 03:21 AM

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Hi All,

I was diagnosed in Dec 2011, due to location was on the watch & wait until Aug 2014, when after partial seizures became unmanageable, did the dive for surgery. I have 2 tumors, an Astro (thought to be Oligo but discovered to be astro after surgery) & an Olgio. Both grade 2. Anyway, just had a follow up appointment with my radio-oncologist who has said that new stats have come out of the RTOG 9802 trial. It states that people that went for Chemo & RT together are now showing as having a longer term survival rate than those who haven't. My Dr said she is advising all her patients now based on this. Interesting read really, if you are into reading the medical information, rather than the documents that hospitals put out that I find rather scary! I like to see the science of it all. I managed to find a PDF that someone (a Dr) has done a presentation based on this study. If anyone is interested (it's pretty convoluted) 

http://www.geino.es/wp-content/uploads/2014/Ponencia_Dra.Bau

The fact they have a calulator to put our stats in and get our life expectancy is pretty weird! But her, they are out there getting information for us. Positive thoughts for all from Australia!!

RE: What's your Oligodendroglioma story?

by shariv on Fri Feb 27, 2015 01:54 PM

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I just had another MRI on Monday. It is still stable! ?? I have no symptoms or side effects from my grade 3 oligo. I haven't had any treatments since June 2010. I just eat a whole food, plant based diet. Praying for everyone who has cancer!

RE: What's your Oligodendroglioma story?

by baines115 on Wed Mar 04, 2015 01:31 AM

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On Mar 31, 2011 2:31 PM jefuchs wrote:

I've been angry at the medical community for publishing dire numbers for oligodendroglioma survival.  All of the medical websites I've seen tell me that the average survival for grade II is 10 years, and the average for grade III is 3.5 years.

It has become apparent that they've scared the bejeezes out of us beyond proportion.  For nearly a year and a half I've been seeking out other oligo patients (I'm not one myself, but my wife is), and every one I've found has beat the "average" by many years.  By contrast, regular readers here have seen many GBM stories that seem to mirror the official life expectancy pretty closely.

So, not finding even a single case that comes close to the published expectations. I want to know if you guys have seen anything different than I have.

Let me know your (or your loved one's) year of diagnosis, and how they're doing.  If you know someone who has actually died of this, please share the story.

My wife was diagnosed in November 2009, and is still on Temodar, and doing very well.

I was diagnosed with grade III Anaplastic Oligodendroglioma back in Sept. 2008.  I had surgery and 2 months of intense radiation along with taking Temodar pills (I opted not to continue the pills after 6 mths).  I have MRIs every 6 months and my nerosurgeon said that the longer it stays away the better the chance of it not returning.  I have my 6 1/2 year MRI next week.  I keep in my mind that God only gives what we can handle and keep upbeat.  I do not let this drag me down.  My husband is one of my best supporters along with my kids and friends along with my radiologist and neurosurgeon.  I sometimes wonder what causes this type of cancer but I'm not sure there is an answer

RE: What's your Oligodendroglioma story?

by TaraMac on Wed Mar 04, 2015 01:40 AM

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Hi,

Just wondering, did you have your kids After chemo?

RE: What's your Oligodendroglioma story?

by Olliegen on Wed Mar 18, 2015 10:09 AM

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On Jan 14, 2015 1:41 PM kamalika wrote:

I'm 36 and its only been 6 months since my surgery and diognosis. I have a oligo grade 3 with co deletions which I hear makes a difference in prognosis. They have told me 15 years life span as of now. yet I have heard of 20 years.

I'm the same as you even the co deletions but a little bit younger at 30 I'm happy meet u!

 

:)

RE: What's your Oligodendroglioma story?

by trudig on Sun Apr 05, 2015 08:30 PM

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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?

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