What's your Oligodendroglioma story?

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RE: What's your Oligodendroglioma story?

by Rymatt4 on Wed Apr 11, 2018 12:24 PM

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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.

October 28,2014 it all began.  I started to stutter and had little control of my left side.  it would come and go.  My husband initally thought i was joking around.  But realized that I wasnt and brought me to urgent care.  They sent me to the hospital immediately.  They thought I was having a stroke.  But once i got to the ER, the fun began...Not.  the xrays, cat scans, mri's were just so much fun(sarcasm).  Next thing i know Im admitted.  On Halloween they did a biopsy.  (Who needs a scary costume when you have your own scar on your head) My tumor was the size of a kiwi in the shape of a tulip.  Biopsy came back as cancer.  But.. when i went out toBrigham Womens hospital in Boston, Dr. Golby (who is fantastic), scheduled me for the removal of the tumor.  She was only able to get 90% of it.   She explained that you never get rid of the Oliogodendroglioma  Its like a weed.  after a 12  hour surgery and four days later I was sent home to New York.  I was told it was a Oliogodendroglioma 2.  benign.  I had the ever so important deletions.  I was doing so well until December 27 2017.  I had six mini seizures.  scary as heck.  so back to the er i went.  They didnt do much but take a chest xray, yes chest xray to rule out pneumonia.  No pneumonia.  They said it was brought on by a respitory infection and stress. They kept me for observation.  Sent me home.(let me just say I will go to a different hospital next time)  I went to see my neurologist who had scheduled an mri for me six weeks later.  So three months to the day I finally got the MRI.  The machine was in a tandem trailer.(Please lets not even get into that conversation).  but the machine was operable regardless of the surroundings.  I got the call yesterday.  My tumor was getting restless and has made some changes, nothing significant.  But enough to put me in panic mode again.  So they will watch and see.  If i were to go by webmd, i would have been two years ago.  So i am so not going there again.  There is not a day I dont think about this thing in my head.  You wash your hair you feel the scar you get a headache you think is my tumor growing again?  Bottom line.

1. OLiogodendrogliomas do not go away, there is no cure just maintenance of it.  

2.  Dont go to WebMd.  Everyone IS different. 

3.  If something doesnt feel right go get it checked out. 

4.  If the meds arent helping, there are so many more out there to help control the seizures. 

5.  If you dont like your doctor or not comfortable with the doctor, just like meds there are so many others out there.

Sorry this is so long. 

My husband knows my results, but I am not telling my two boys at this time. One is 22 and the other 17.  The 22 year is graduating from college in May and then is headed to China for a year.  I will not jeopardize his adventure with my issue.

The other is a senior in highschool, graduate in June.  He was home when the first one happened. Messed him up big time.  So until its to a vital point of surgery or what ever else they may or may not have planned for me.  My lips are sealed.   

Im 55 but was initially diagnosed when i was 52. 

Thanks for listening. 

Carol 

(excuse the bad sense of humor) if i dont laugh I will cry. 

RE: What's your Oligodendroglioma story?

by Renaelb on Thu Apr 12, 2018 07:18 PM

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Hello-I was diagnosed in March of 2018, so I am just starting on my journey with this. I had surgery a month ago- he thinks he removed 90% of the tumor-my left arm and leg didn’t work after surgery so I spent the next 3 weeks in rehab and it came back and I am pretty much back to normal physically. I had a 6cm oligodendroma, grade 2-in the motor are of my right brain. I have the 2 deletions, which makes me want to try chemo for sure. My neuro is also recommending radiation-I don’t know as much about that so I have a consultation with a radiation oncologist in a few weeks., and will decide if that is something I want to do after I get more info. I have told family I am not afraid of dying, but I am very afraid of suffering. I don’t want to do Any treatments that will make me miserable. We think I have been having issues from the tumor for several years now-its funny to me that after surgery I felt 20 years younger( I just turned 46) . In the last two years or so I have had chronic pain from degenerative disk disease in my neck. I have not had that pain since surgery- the neuro said it isn’t related but I think it obviously is. Either way I am very happy about it, so I don’t much care if they figure out why or not. I think the doctors sometimes confuse “we haven’t found a connection with “there is absolutely no connection” i am so glad to be off the pAin medication! I am mentally slower since surgery, but every day gets a little easier.

RE: What's your Oligodendroglioma story?

by lamac72 on Thu Apr 12, 2018 10:08 PM

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Hello,

I was diagnosed in 2011 after going to the doctor to tell them something was wrong with me. My left foot and hand moved without me moving them, and I sneezed 50-100 times a day but wasn't sick. Long story short finally demanded to have MRI and was diagnosed with a golfball sized Oligodendroglima grade 2 in the right side of brain, having issues with my left size. I have surgery in December of 2011 and the doctor said he got 95-98% of it.. I later did 6 weeks of radiation and did really good expect the hair loss. I didn't feel sick or overly tired. I also have to 2 deletions. It has now been 7 years and have MRI's yearly. My MRI in January of this year showed a small growth. They went in and removed the whole growth in February of this year. I am now starting to go on Temdor it's a chemo pill you take 5 days a month to hopefully any remaining cells.  I am now seeing a Neruo Onocolgoist. He is very happy my tumor seems to grow very slowing. I will be also having some DNA testing done. Since he thinks there are other cancer drugs out there for other cancers that with my DNA could work too. I am also 46 years old which people keep telling me is We have age on our side! My only advice is to try and keep a positivie attitude it helps alot and have a great support system. Good luck to you. Laura

RE: What's your Oligodendroglioma story?

by Metroman on Sat Apr 14, 2018 11:45 AM

Quote | Reply

On Apr 12, 2018 7:18 PM Renaelb wrote:

Hello-I was diagnosed in March of 2018, so I am just starting on my journey with this. I had surgery a month ago- he thinks he removed 90% of the tumor-my left arm and leg didn’t work after surgery so I spent the next 3 weeks in rehab and it came back and I am pretty much back to normal physically. I had a 6cm oligodendroma, grade 2-in the motor are of my right brain. I have the 2 deletions, which makes me want to try chemo for sure. My neuro is also recommending radiation-I don’t know as much about that so I have a consultation with a radiation oncologist in a few weeks., and will decide if that is something I want to do after I get more info. I have told family I am not afraid of dying, but I am very afraid of suffering. I don’t want to do Any treatments that will make me miserable. We think I have been having issues from the tumor for several years now-its funny to me that after surgery I felt 20 years younger( I just turned 46) . In the last two years or so I have had chronic pain from degenerative disk disease in my neck. I have not had that pain since surgery- the neuro said it isn’t related but I think it obviously is. Either way I am very happy about it, so I don’t much care if they figure out why or not. I think the doctors sometimes confuse “we haven’t found a connection with “there is absolutely no connection” i am so glad to be off the pAin medication! I am mentally slower since surgery, but every day gets a little easier.
Dont let this worry you too much (though i know its hard) but i was diagnosed with the same back in 1995 when i had a seizure. Ive been through three surgeries through that time and completed both Chemo and Radiation. Outside of memory loss and concentration, both me and the doctors agree that a positive attitude is the best medicine available! Keep positive and don't let this bring you down! I keep my sense of humor up (with the goal to irritate my wife) and thats what makes the days go by without any worries. (During my last surgery they had to wake me for the speech test since its in the speech area. When they woke me, they asked how i felt. I told them i was pissed! When asked why i said “because im on this cold table naked, and your nurses are wearing clothes”) Again, keep life strong and just always remember, life is a gift and enjoy it every moment you have! Jim

RE: What's your Oligodendroglioma story?

by Renaelb on Mon Apr 16, 2018 06:27 PM

Quote | Reply

On Apr 14, 2018 11:45 AM Metroman wrote:

On Apr 12, 2018 7:18 PM Renaelb wrote:

Hello-I was diagnosed in March of 2018, so I am just starting on my journey with this. I had surgery a month ago- he thinks he removed 90% of the tumor-my left arm and leg didn’t work after surgery so I spent the next 3 weeks in rehab and it came back and I am pretty much back to normal physically. I had a 6cm oligodendroma, grade 2-in the motor are of my right brain. I have the 2 deletions, which makes me want to try chemo for sure. My neuro is also recommending radiation-I don’t know as much about that so I have a consultation with a radiation oncologist in a few weeks., and will decide if that is something I want to do after I get more info. I have told family I am not afraid of dying, but I am very afraid of suffering. I don’t want to do Any treatments that will make me miserable. We think I have been having issues from the tumor for several years now-its funny to me that after surgery I felt 20 years younger( I just turned 46) . In the last two years or so I have had chronic pain from degenerative disk disease in my neck. I have not had that pain since surgery- the neuro said it isn’t related but I think it obviously is. Either way I am very happy about it, so I don’t much care if they figure out why or not. I think the doctors sometimes confuse “we haven’t found a connection with “there is absolutely no connection” i am so glad to be off the pAin medication! I am mentally slower since surgery, but every day gets a little easier.
Dont let this worry you too much (though i know its hard) but i was diagnosed with the same back in 1995 when i had a seizure. Ive been through three surgeries through that time and completed both Chemo and Radiation. Outside of memory loss and concentration, both me and the doctors agree that a positive attitude is the best medicine available! Keep positive and don't let this bring you down! I keep my sense of humor up (with the goal to irritate my wife) and thats what makes the days go by without any worries. (During my last surgery they had to wake me for the speech test since its in the speech area. When they woke me, they asked how i felt. I told them i was pissed! When asked why i said “because im on this cold table naked, and your nurses are wearing clothes”) Again, keep life strong and just always remember, life is a gift and enjoy it every moment you have! Jim
I agree, a sense of humor is a must! :)

RE: What's your Oligodendroglioma story?

by vwxyz on Wed May 09, 2018 02:01 AM

Quote | Reply

Rymatt4, Dr Chiocca (not sure of the spelling) Is the Chief of Brain Surgery at Brigham and Womens, Boston, MA. He trained all the Mass General brain surgeons at Mass General Hospital.  He is the best of the best in the Boston area. Speak with him or to someone about him or somone that can possibly help you.  Last I knew he was still there in August 2014.

J.L. 

RE: What's your Oligodendroglioma story?

by nasir_merchant on Fri May 18, 2018 04:12 PM

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Everything was running sommthly, perfect and my mom was in good health (age 57 years). She was travelling frequently to visit me in Abu Dhabi. On 20th March/2016, she felt like something warm is flowing from her leg to the entire body and was for few seconds. After half an hour she got her first seizure and went to hospital where she was diagonosed with stroke & respective medicines were given. After a month or so she was forgeting a lot / having issues with her memory and also started with severe headaches. Her health was getting bad day by day and than on 21st May, 2016 she got a second seizure. We rushed to the hospital, MRI was done and the neuro surgeon said its a big tumor crossing the midline and presumably it is GBM (>90% chance). We decided to take a chance and go for surgery. On 25th May, 2016, 7 hours surgery was done and the surgeon was successful to remove 80% of the tumor but the one crossing the midline was not accessable. 1st june, 2016, mom was discharged and was recovering slowly & her speach & memory was reviving. 7th June, 2016 - we had an appointment with the surgeon and biopsy result was "Anaplastic Oligodendroglioma" with the life expectency of 6 to 7 years. We siblings (4) were very happy that its not GBM and our mom have 6 to 7 years to live. By the way, mom was never aware about her disease. 14th June, 2016 - First Onco appointment & it was decided for 33 radiations with Temozolomide. It started end of June,2016 and ended 11th Aug, 2016 (6 days a week). Thereafter monthly cycles of temozolomide was started. 8 months thereafter were very good, we made nice memories and than suddenly on 11th Mar, 2017 she got another seizure followed by an MRI which revealed a mild shrinkage of the tumor. 24th April, 2017, another seizure and than respectively doctor adjusted the medicines and said its only a month ago MRI was done - so no MRI for now. 8th June, 2017, scheduled MRI was done and it revealed PROGRESSION. 11th June, 2017 another seizure & mom was admited to hospital. 20th June, 2017, surgeon & onco's appointment was on the same day. Surgeon said no more surgery is possible, Cyber knife could be an option to be evaluated. The Oncologist said - Avastin is the only option and 40% chance that it may work. 29th June, 2017 - 1st Avastin with Irronotican(chemo). 18th July, 2017 1st Cyberknife session with Avastin. Untill 23rd July - six cyberknife sessions were done. 1st Aug, 2017 - Avastin 18th Aug, 2017 - Avastin + Irronotican 8th Sep, 2017 - Avastin + Irronotican Balance & memory was getting effected and was worse day by day. So important was that Cyberknife, Avastin & Irronotican worked and MRI revealed shrinkage from 4.2cm to 1.9cm. 6th Oct, 2017 - another Avastin + Irronotican. 18th Oct, 2017 - Another Seizure but doctor adjusted the medicines to control it. 26th Oct, 2017 - another Avastin + Irronotican. Speach, memory & balance was gradually at decline. 27th Oct, 2017 - Mom had temperature, urine infection and was admited to hospital. After recovery from infection, she never stud up and was completely bed ridden. We decided to stop chemo, Avastin and decided to wait & watch. 21st Jan, 2018 - another MRI & it revealed that the tumor has infiltrated & significant progression and then was decided to put my mom in comfort care. She was completely bed ridden, no speech, sleep was increasing to almost 80%. Last 3 weeks, mom stayed in comma and passed away on 7th April, 2018 at the age of only 59 years. So almost 2 years of fight but in the end disease won and we loose. It reacted like a GBM. I hope our story will be of great help to you guys. It’s not easy when your loved one is slipping away day by day with personality, speech, memory, mobility etc. etc and finally the last breath. I wish you guys good health and plz don’t loose, carry on your fight and I am sure you will succeed (touch wood). In case of any question, please feel free to ask. Best Regards, Nasir

RE: What's your Oligodendroglioma story?

by AussieMarg on Fri May 25, 2018 07:25 PM

Quote | Reply

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 finally diognised with an Anaplastic oligodrendroglioma Stage 3 on the 08/08/2014 so nearly four years ago. It was three months before I was diagnosed. I had six or seven half hour seizures AND a ONE HOUR seizure before I was diagnosed with a brain tumour. This resulted in a VERY frightened Maine Coon X cat who lost weight worrying about me. The local hospital took absolutely NO notice of the police report  the ambulance people and least of all me. The medical staff at the local hospital didn't even bother to look inside my mouth where I had lacerations... . I was too dazed to even think to open my mouth at the time  I asked the so called doctor for a CT scan and his reply was "we don't do CT scans in Emergency...... My voice was so slurred that my middle son who is my Power of attorney though I had had a stroke. I didn't go back to that hospital again. I live two hours drive from the Princess Alexandra Hospital in Brisbane. My brain tumour is in my left frontal temporal lobe and was FIVE inches across when I was first diognised. My oncologist told me that it had been there for at least six to eight years hence its large size. Two weeks after I was diagnosed I underwent emergency surgery at the Princess Alexandra Hospital in Brisbane Queensland Australia. 

Because I have had extreme chemical sensitivities for the past thirty years I decided to not have chemotherapy  I was supposed to have thirty single doses of radiation treatment plus chemo. Because I opted for no chemo my brain cancer team gave me fifteen double doses of radiation therapy. The neurosurgeon team could only remove a tiny piece of brain tissue because of the size of my malignant brain tumour. 

So far and most likely because of my age (68yrs)now so 64 at the time of diognosis my medical team are astounded at how well I'm doing. I have been told that by one one of the reporting team after I have an MRI.

I have been on Keppra for the past not quite four years. Over the past year I have had to have the dose gradually reduced from 500mg twice daily to 250 twice daily because of extreme side effects. I think see my neurologist in six days time so need to talk him about me being on another antiseize drug. I also take Lamotrigine 25mg. Dr. Sandra Cobot advised me to take at least 150mmg of Organic Selenium a day so I take one capsule twice daily.

When I asked my oncologist how long I would live for with full treatment he said eight years. I asked him half treatment, he said five years, then I asked him no treatment and he said eighteen months. I have had full treatment just in a different way. The medical team had me placed into a high care nursing home for me to undergo my radiation treatment. I escaped after six months back into the community when I live alone, have had to move twice while on an Aged Pension and paying private rent. I am on an Aged Care package so get help with grocery shopping and basic cleaning. I am also entitled to six hours of cooking per week but have opted for an extra hour to go grocery shopping and no cooking for now until I really need it. I've been told that it takes months to go onto a higher level of the care package so I don't see the point of having cooking done for me when I can still do it myself. This way my dollars build up and always roll over for when I do need it.

I don't worry or get angry about how long I will last as this has a negative impact on my immune system which I need to be as strong as possible to fight the Anaplastic oligodrendroglioma Stage 3. 

RE: What's your Oligodendroglioma story?

by Metroman on Fri May 25, 2018 07:38 PM

Quote | Reply

On May 25, 2018 7:25 PM AussieMarg 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 finally diognised with an Anaplastic oligodrendroglioma Stage 3 on the 08/08/2014 so nearly four years ago. It was three months before I was diagnosed. I had six or seven half hour seizures AND a ONE HOUR seizure before I was diagnosed with a brain tumour. This resulted in a VERY frightened Maine Coon X cat who lost weight worrying about me. The local hospital took absolutely NO notice of the police report  the ambulance people and least of all me. The medical staff at the local hospital didn't even bother to look inside my mouth where I had lacerations... . I was too dazed to even think to open my mouth at the time  I asked the so called doctor for a CT scan and his reply was "we don't do CT scans in Emergency...... My voice was so slurred that my middle son who is my Power of attorney though I had had a stroke. I didn't go back to that hospital again. I live two hours drive from the Princess Alexandra Hospital in Brisbane. My brain tumour is in my left frontal temporal lobe and was FIVE inches across when I was first diognised. My oncologist told me that it had been there for at least six to eight years hence its large size. Two weeks after I was diagnosed I underwent emergency surgery at the Princess Alexandra Hospital in Brisbane Queensland Australia. 

Because I have had extreme chemical sensitivities for the past thirty years I decided to not have chemotherapy  I was supposed to have thirty single doses of radiation treatment plus chemo. Because I opted for no chemo my brain cancer team gave me fifteen double doses of radiation therapy. The neurosurgeon team could only remove a tiny piece of brain tissue because of the size of my malignant brain tumour. 

So far and most likely because of my age (68yrs)now so 64 at the time of diognosis my medical team are astounded at how well I'm doing. I have been told that by one one of the reporting team after I have an MRI.

I have been on Keppra for the past not quite four years. Over the past year I have had to have the dose gradually reduced from 500mg twice daily to 250 twice daily because of extreme side effects. I think see my neurologist in six days time so need to talk him about me being on another antiseize drug. I also take Lamotrigine 25mg. Dr. Sandra Cobot advised me to take at least 150mmg of Organic Selenium a day so I take one capsule twice daily.

When I asked my oncologist how long I would live for with full treatment he said eight years. I asked him half treatment, he said five years, then I asked him no treatment and he said eighteen months. I have had full treatment just in a different way. The medical team had me placed into a high care nursing home for me to undergo my radiation treatment. I escaped after six months back into the community when I live alone, have had to move twice while on an Aged Pension and paying private rent. I am on an Aged Care package so get help with grocery shopping and basic cleaning. I am also entitled to six hours of cooking per week but have opted for an extra hour to go grocery shopping and no cooking for now until I really need it. I've been told that it takes months to go onto a higher level of the care package so I don't see the point of having cooking done for me when I can still do it myself. This way my dollars build up and always roll over for when I do need it.

I don't worry or get angry about how long I will last as this has a negative impact on my immune system which I need to be as strong as possible to fight the Anaplastic oligodrendroglioma Stage 3. 

I am sorry to hear that, when I was diagnosed back in 1995 they said the same to me, 8-10 years. I went through three surgeries (and the last one was cool since they woke me up halfway through to have me speak to make sure it doesn’t affect my speech. Even gave me photos of my brain). I’m still here and they now estimate 13 years to go. Processes are better now, so I wish you the best to get as many years as you can to still enjoy life! Just remember, when things seem bad, the do get better. For me, after 20 years my old girlfriend (my true, and forever love) and I found each other again as we both were searching each other at the same time. She knows my condition and doesn’t care. She wants to be together again as I do too. She’s prepared for my passing and is the best to help enjoy life while it’s still here. Make the best of what you can! Never let anything affect your life. Just remember younger people die in car accidents every day, death happens anytime, any age. so enjoy life as it’s still available!

RE: What's your Oligodendroglioma story?

by AussieMarg on Sun May 27, 2018 06:12 AM

Quote | Reply

May I extend my sincere sympathy to you with your dearly beloved wife's passing. I hope you have come to terms with your loss. Take care Aussie Marg  

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