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Grade III: Anaplastic Oligodendroglioma lifespan?

cindysuetoyou's picture
cindysuetoyou
Posts: 514
Joined: Dec 2009

My 26 year old son was diagnosed with an anaplastic oligodendroglioma in May of 2009. He had a craniotomy and they felt like they got all of the visible tumor out. He then had 6 weeks of radiation along with 6 weeks of Temodar. Now he's doing the 5 days of Temodar/23 days off, indefinitely. Except for nausea etc while on chemo, you'd never know that anything had ever been wrong with him.

His dr. was not optimistic. He basically gave us no hope. All he would say is that the median survival rate is 3 to 5 years. When I pressed him for some hope and asked him if anyone with this kind of cancer, a grade III, ever lived like ten or so years, he said it could be sooner, like two years.

What I am wondering....I haven't seen anything yet where someone with anaplastic oligodendroglioma says that they lived more than 5 or so years. Maybe I just missed it. Anyone out there going on 5+ years?

His FISH evaluation showed that he does not have the gene deletions that make this form more sensitive to chemo.

Thank you to anyone who can encourage me.

MeeCheeAm1975
Posts: 3
Joined: Oct 2017

Just thought I would reach out to see how your wife was doing.  My husband is 41 and he had an episode. He was airlifted and taken for his first surgery on 12th May then his second on 9th June. He has had 30 doses of radiation and TMZ. We are currently on his 45 day break.  He is due to for scans, blood work and a check up tomorrow before he begins 1 year of TMZ - 5 days a month. He still works, golfs, goes to the gyn, drives, walks the dog and is very able bodied. I have supported his medical treatment with lots of alternative healing such as Essaic tea (4times daily) as well as lots of sound therapy healing, reiki and other modalities that he was open to. 

Please let me know how your wife has progressed. 

Looking forward to your response. 

gtginri
Posts: 2
Joined: Aug 2017

 I am new to this site.  So a bit long winded.

 

Before I go through my tumor story (which began in 2003) I’d like provide a bit of my family history… my mom is 90 and has various forms of cancer over a 45 year period, my brother had testicular cancer at age 17 and is now 46 with two kids, my sister has various forms of cancer starting off with stage 4 colon cancer at age 49 and given 3 months to live… she is now 61 and going strong.   We are extremely blessed and fortunate… we have never given up hope, and keep a positive attitude.  To quote Swindoll, “…The only thing we can [control]…is our attitude ... I am convinced that life is 10% what happens to me, and 90% how I react to it. And so it is with you ... we are in charge of our Attitudes."

My olilgo story started at age 51 in late April 2003 when I was returning from a business trip (it was probably there before that but I had no symptoms).  I had a Grand Mal seizure … My ER Dr after a few tests told me he had bad and worse news… seizure caused a minor heart and it (the seizure) was due to a brain tumor.  To keep the long story short, I had a stent put in 3 days after the seizure left the hospital and haven’t had any heart problems since.  A few days later I left for home (a few states away).  I had brain surgery about 2 month later—July 2003 (result in little more that biopsy due to the tumor location near the motor cortex… surgery was about 11 hours and I was in hospital about 9 days.   It was a stage 2-3 Oligo with 1p and 19q deletions (identified in 2003) and IDH mutations (identified in 2010).  I returned to work 2 months or so after surgery—Sept 2003…my job was as the principle investigator (electronic/system engineering consultant) for a major FAA project and then a USAF project… I also served 30 in years in the military.   I retired after my second surgery in 2014 (decided I could retire and I was tired of my new micromanaging boss)… the pathology showed the tumor had progressed to Stage 3. 

As to my treatment, it was based on my decision and was based on discussions with my neuro oncologist and surgeons.   I go to MGH (and have been since 2003) for my check-ups, MRIs and recent (2014)  surgery.  Originally (2003) it was to wait to see what happened after the first surgery. Then in 2005 I did 24 months of Temador ( 5 days on 28 days off),  which was all about I could tolerate… minor nausea and constipation while I took it.  I refused to do any radiation.   MRIs are now every 6 months but during the time I did the Temador it was monthly.   After my second surgery in 2014, I did 33 days of Proton Radiation… focused beam not the typical radiation given for a brain tumor.  I did this as we felt more Temador could toxic… I think the jury is still out on this idea.  Due to the technical advances and techniques in surgery they got most of the tumor (2014)… I went for my brain surgery on Friday and I walked (no wheel chair) out of the hospital on Monday afternoon… was told I was in surgery for 6-7 hrs.  So far so good—no growth.  

A far as medications I was originally on generic forms of Dilantin then changed (after a couple years) to generic forms of Keppra and Lamictal... to control partial seizures which largely due job related stress … seizure characteristics--can’t talk for about 10sec…happen a couple of times a month.   I also suffer from minor fatigue but I think that is in a combination the tumor and medications I take for the seizures, blood pressure, and Type 2 diabetes.  I am still reasonably active…driving, camping, hiking, woodworking and a bit of jewelry making.  I really haven't changed my diet and I do have an occasional drink or two.

 

I am quite familiar with statistics and they a can be misleading especially with the small sample size and the factors the used and the most recent factors to consider.  I have yet to see any that relate to the specifics of my tumor so I don’t have much use for them (until they do relate to the more recent factors).

I am blessed and very fortunate for a great family, great friends and fantastic Doctors.  My life style has changed (after all am older and retired) but to be honest I don't think about my medical situations that often.

 

To sum it up never give up hope.  The treatments are continually getting better…keep a positive attitude.  

 

Markpotter
Posts: 2
Joined: Dec 2017

My son was daignosed with a ODG grade 3- in early 2015 with a poor prognosis from the specialists though his general neuro-oncologist was more upbeat, but still pretty depressing. He also had no co-deletions so it was felt chemo would not offer benefits. Surgery was successful. He is now almost 3 years after diagnosis and scans still show no progression, though we feel his concentration and memory may have been affected, possibly by radiotherapy.

How has your son fared since?

pframp
Posts: 1
Joined: Dec 2017

I was diagnonsed with oligodendroglioma in 2005 - 12 years ago (at age 30).  The tumor was in my left frontal lobe, crossing over into the right frontal lobe, which meant it had been there for 5-10 years.  Removal of the tumor was not an option.  I had been married for 9 years and had a 3 year old daughter and 13 month old son.  Amazingly, when I was diagnosed, I was at Mayo Clinic and my treatment team had just finished researching the effects of radiation along with chemotherapy for slow growing brain tumors relating to years of survival.  This research wasn't released until April 6th, 2016.  Fortunately, I was a patient at Mayo and these research findings were already known when I was diagnosed in 2005.  I had radiation and chemotherapy with oral Temodar, then Temodar alone for 10 months.  I was told that I had approximately "10+ years" of life.  It has now been 12 years (today) since I was diagnosed and I continue to not have have any significant changes on my MRIs!  Praying that all of you are given a bit hope from my story!

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