Grade III: Anaplastic Oligodendroglioma lifespan?

rwberne

cindysuetoyou said:

He died in October of

He died in October of 2012. 

I hope and pray that your wife is winning the battle. I'm guessing she has the gene deletions and that's why she was given a better prognosis. Our doctor told us straight up that if David had the gene deletions, his prognosis would be 10-13 years. Without it...2-5 years. He lived 3 years and 5 1/2 months after diagnosis.

Blessings,

Cindy in Salem, OR

 

I was diagnosed 4 years ago

   So, in September of 2011 I thought I was having a stroke, because I was having sudden problems speaking.  Went to the ER, CT and then MRI confirmed  oligodendroglioma - Stage 2/3.  Craniotomy 3 weeks later by Dr. Philip Gutin - Chief of Neurosurgery at Sloane Kettering, a wonderful surgeon and human being.  My tumor was left frontal lobe, right at the area of expressive speech, and I speak for a living, so it was dicey surgery to be sure he didn't disable my ability to express myself.  He got 80% of the tumor.  It was a conscious procedure, and the anesthesiologist came by the next day to tell me I was the funniest patient she had ever seen - constantly joking every time they asked me to speak.  I then did the Temodar route, and was asked to join a research study at Sloane where I had my stem cells harvested, underwent intensive chemotherapy and then a transplant of my own stem cells.  One month in the hospital to regain an immune system.  The theory is that since oligos (particularly with the double gene deletion) are chemo sensitive, perhaps INTENSIVE chemo would be even more effective.  The goal is to delay radiation (and the inevitable down the road brain necrosis) as long as possible.

   Well, after the surgery I was back to work within about 6 weeks.  After the transplant, it was about 2 and 1/2 months (couldn't be exposed to things for risk of infection), but then back to work.  I eventually developed chemo brain - in my case this meant depression, cognitive slowing, spaciness, etc.  Went back to Sloane and was assigned one of their psychiatrists who put me on Effexor with almost amazingiy good results.

   I guess I am posting this because I think my recovery has been nothing short of amazing, and I want to give others hope.  No one around me (unless they already know my diagnosis) would think that anything is wrong (unless they notice the craniotomy scar).  I feel great, and I rarely think about that tumor remnant that still remains.  Intellectually, I know this will eventually become an issue again, and could certainly shorten my life, but whenever that comes up I just remind myself that it's equally likely that I will die of blunt force trauma after my wife clobbers me for constant wisecracking and lack of political correctness.  Sorry for such a long post, but to all of you in the same boat - or supporting someone in the boat - just remember that NONE of us is getting out of this world alive, so enjoy the cruise!

 

allysheedy

dwcox said:

brain tumor treatment
I had surgery for a left frontal lobe oligodendroglioma in Sept. 2003, then I had a six month course of Temodar, an oral chemotherapy. It seems to have been very effective in killing any remaining cancer cells. No additional tumor growth since the surgery.

That gives me hope for my

That gives me hope for my spouse who just had a resection and is doing radation and chemo.

 

rmalone

I am so sorry it has taken me

I am so sorry it has taken me so long to see this message but I just came across it and have to give you some encouraging information. I am 21 years post surgery for the exact same thing and doing fine. Praise God !!!! I pray that this finds you with the same blessings as I have had.

lbillips777

allysheedy said:

That gives me hope for my

That gives me hope for my spouse who just had a resection and is doing radation and chemo.

 

PCV or Temador for Garade III Oliogodendroglioma

I am seeking some families who are goining through simular sinerios or who have been in my shoes. My husband feel to a sezier Oct 2015. While in the emergency room the doctor told us he had a possible Oliogodendroglioma. They following week we were seen at the City of Hope and meet with a surgeon to remove the tumor. Surgery happened in December and the pathology report came back as a Grade 3 olio. He does have 1p, 19q deletion. He is currently in his radiation treatments and will switch over to a chemo therapy regiment called PCV. I am seeking information on side effect. WHat to look out for and really wondering if he should take temador instead. Can anyone let me know their thoughts on this? 

PrescottPaul

lbillips777 said:

PCV or Temador for Garade III Oliogodendroglioma

I am seeking some families who are goining through simular sinerios or who have been in my shoes. My husband feel to a sezier Oct 2015. While in the emergency room the doctor told us he had a possible Oliogodendroglioma. They following week we were seen at the City of Hope and meet with a surgeon to remove the tumor. Surgery happened in December and the pathology report came back as a Grade 3 olio. He does have 1p, 19q deletion. He is currently in his radiation treatments and will switch over to a chemo therapy regiment called PCV. I am seeking information on side effect. WHat to look out for and really wondering if he should take temador instead. Can anyone let me know their thoughts on this? 

I am a family medicine

I am a family medicine physician with grade III AA, so curious about my own tumor and I realize reading too much of the doom and gloom.  Seems aggressive therapy improves progression free survival but not the overall survival.  I am feeling fine now and am under going neurocognitive rehab, which is as far as I will go withe allopathic therapy.  No more surgeries or cytotoxic drugs with the survival odds where they are. Quality of life is most important to me at this time.  I can still walk and hike easily, ride my road bike easily.  I took temozolomide and did fine.  The combo with imrt has caused a lot of cerebral edema which may relate to some of the cognitivie changes.  Initially took moderate dose of dexamethasone to control the edema but that is really counter productive as the tumor is assisted with the steroid use.  So, my neurooncologist agree on Avastain for the short term to see igf we can reduce the edema wth that.  She notes the new blood vessels from the tumor are of poor quality with leaky walls, so edema may be from that problem.  Avastin is not a steroid and may help with the edema w/o the use of steroids.  Avastin is a shocker for cost $10000per infusion.  MRI coming up soon to check on the edema.  Hope it works for that as overall survival is not helped by pretty much any drug used so far.  check out the following url as it summarizes pretty much what I have read (tomozolomide was a fairly easy chemo to tolerate):http://www.cancerresearchuk.org/about-cancer/cancers-in-general/treatment/cancer-drugs/pcv#common.  I really wish the best to you and your husband at this time.  Unless your City of hope doctors say something different, then keep in mind pretty much all therapies for these tumors fail at ovrall survival but do help with progression free survival--something to keep in mind when told what to try next.  Not me, I want the quality of life I have right now, which is very good.  I can walk, hike, go biking on my road bike or mountain bike.  I cannot go back to healthcare at this time, which makes me sad.  I hope you can find a person to reseach the studies for you and at least take that burden off of your shoulders.

hernandez_juan

rwberne said:

I was diagnosed 4 years ago

   So, in September of 2011 I thought I was having a stroke, because I was having sudden problems speaking.  Went to the ER, CT and then MRI confirmed  oligodendroglioma - Stage 2/3.  Craniotomy 3 weeks later by Dr. Philip Gutin - Chief of Neurosurgery at Sloane Kettering, a wonderful surgeon and human being.  My tumor was left frontal lobe, right at the area of expressive speech, and I speak for a living, so it was dicey surgery to be sure he didn't disable my ability to express myself.  He got 80% of the tumor.  It was a conscious procedure, and the anesthesiologist came by the next day to tell me I was the funniest patient she had ever seen - constantly joking every time they asked me to speak.  I then did the Temodar route, and was asked to join a research study at Sloane where I had my stem cells harvested, underwent intensive chemotherapy and then a transplant of my own stem cells.  One month in the hospital to regain an immune system.  The theory is that since oligos (particularly with the double gene deletion) are chemo sensitive, perhaps INTENSIVE chemo would be even more effective.  The goal is to delay radiation (and the inevitable down the road brain necrosis) as long as possible.

   Well, after the surgery I was back to work within about 6 weeks.  After the transplant, it was about 2 and 1/2 months (couldn't be exposed to things for risk of infection), but then back to work.  I eventually developed chemo brain - in my case this meant depression, cognitive slowing, spaciness, etc.  Went back to Sloane and was assigned one of their psychiatrists who put me on Effexor with almost amazingiy good results.

   I guess I am posting this because I think my recovery has been nothing short of amazing, and I want to give others hope.  No one around me (unless they already know my diagnosis) would think that anything is wrong (unless they notice the craniotomy scar).  I feel great, and I rarely think about that tumor remnant that still remains.  Intellectually, I know this will eventually become an issue again, and could certainly shorten my life, but whenever that comes up I just remind myself that it's equally likely that I will die of blunt force trauma after my wife clobbers me for constant wisecracking and lack of political correctness.  Sorry for such a long post, but to all of you in the same boat - or supporting someone in the boat - just remember that NONE of us is getting out of this world alive, so enjoy the cruise!

 

Thank you

Thank you for your post.  My wife just got diagnosed in June 2016 with anaplastic AO.  All the best. 

Greenough

Oliodendroglioma stage 3 longgevity

This is real. One can live a long time with stage 3 Oliodendriglioma.

My twin sister was diagnosed 16 years ago when she was 48 in 2000 with oliodendriglioma stage 3 in her left frontal lobe after a grand mal seizure. She had a craniotomy then temodor for six months that was new then and after six months cancer lit up on an MRi and she had radiation. the radiation caused considerable damage but saved her life. The oncologists predicted she could live two years.  She still had her house and could still drive but not work anymore. Four years later she started having partial seizures even though on zonisamide. Keppra and vimpat and then onfi added plus lithium and synthrood since radiation and subsequent scarring killed pituitary and increased seizures and resulted in manic/depressive and OCD personality changes. She became much more disabled with added seizure drugs and never went back to work or drive after heavy duty seizure meds started. She had to move to a senior housing and have aides. She lost all initiative and got depressed. She had a second craniotomy plus five months of chemo to remove/control cancer regrow th at scar margins at original site about 8 years ago. Her MRIs have shown no change since then.  She is more disabled from partial seizures that happen about five times a day and she falls often from them And is embarrassed and does not like to go out. The many meds have significant side effects. She has an aide all day and restricted life. She is alive and still herself but uses a walker and is depressed and no motivation and appears drugged. She is suicidal sometimes which we treat with celexa and talk therapy but not really effective. She can no longer be on mood stabilizers except lithium because of tardive dyskinesia which popped up in use. As her twin and caregiver with her only son we are grateful to have her in our lives but very sad that she is so sad about what she has lost. She takes anout 27 pills a day. Her career, her independence, driving, clear thinking, memory, parenting and emotional stability plus incomplete seizure control with max meds allowable. It has been a long haul and the original doctors are thrilled she is still alive but the young ones dismissive of her value as an individual of value or seriousness with only 3/4 of a brain And so disabled. She had been a mother, an occupational therapist with two graduate degrees and a gymnast. This disease had taken a lot from her and also from her son who is so involved in her daily care and twin who has her sister in body but not her friend. Sorry to be discouraging. Living long but not well is very very cimplicated. 

cariemery47

Eugene Velez said:

Grade 3 Astrocytoma and just operated on
The Love of my life, my wife just had her operation this past Saturday 3/13/10 and the surgeon was able to remove all of the tumor in the right frontal lobe. The following Sunday they gave her another MRI and did not see any remnant of the tumor. Currently she has no side affects from the operation and seems to be acting normal. Now my question is, has anyone used an alternative or found an alternative to radiation? I've read a lot of different views on radiation therapy and it seems to me that in this particular situation radiation does more harm than good. Does anyone think the same as me or have a view on this.

Radiation

my husband and best friend in the world had surgery 12/28/15  olglodendrone glioma grade 2 and  astrocytoma grade 3 anaplastic. He had both radiation and temodar coming up on six month round 5day/28 off.  now they see changes on the MRI it may be radiation necrosis. Giving off same signal on MRI. It may be worse than the cancer as far as the devestation it can cause. I don't know much just that we would have rolled the dice and took the chance on temodar alone. 

cariemery47

sue Siwek said:

don't know where you are
don't know where you are getting treatments. will say run don't walk to the nearest teaching and research hospital. my husband is a 10 yr survivor of a grade 111 astrocytoma. went to henry ford hospital after being told at our local hospital that they couldn't do much for him. check the best hospital for this in your state and go there.

10 years

what a wonderful thing to hear. I pray everyday to hear those words. There is hope. Bless you 

Kathy03222

Hello I just had a grade 3 anaplastic oligodendroglioma removed

from my right frontal lobe. I am 1 week away from starting my treatments of 7 weeks of radiation and chemotherap. I am really  nervous about the chemo part of the treatment  Your still in a fog at least I was when this whole snow ball started rolling.  So let me tell you the whole story from the beginning .  I am a 47-year-old mother of two married going on 22 years to the world's most supporting husband.  A month prior to finding my tumor I was having these really weird pressure headaches weird in the fact that they would only happen after I was sitting down for a while so I get in the car drive 20 minutes to go to the grocery store park walk to the grocery store and like all this pressure would just go to my head and throb it wasn't like a normal headache so I took the normal a migraine medication or ibuprofen just to sort a ease the symptoms  that would last anywhere from 15 minutes to 1/2 hour.  I had been to my primary doctor for my annual physical and I let them know about it they said to keep a two-week headache diary in the check back with me  in 2 weeks  well needless to say we never got to that appointment.   On 28 September we drove to Maine to drop my daughter off at college  that day the pressure headaches wouldn't stop it was constant so needless to say I spent most of the day outside in the shade of a tree with my son  we then decided to drive over to Walmart to get a couple things my daughter needed for her dorm.  When we got back to the college campus we started walking back to her dorm and my left leg went to Jell-O if it wasn't for my son and husband being right near me and probably on my ****  so we turned around and back to the car we went my husband went and got my daughter to come outside to say goodbye to me   So then we started the long drive back too newhapshire I figured if I play down and get some sleep maybe that would help well I'm laying down on the console in the car and we're driving and my  husband has been sent to trying to talk to me to see if I'm OK and I'm trying to answer but nothings coming out and then my right arm starts acting really weird it gets on pins and needles and  numb so my son been googled the symptoms and he thought I was having A stroke. So off to Maine medical we went.  The next thing I remember is my husband telling my son to go get help and then somebody opening the door and pulling me into a wheelchair at the same time all I can think is oh I'm going to be sick and I start throwing up in the parking lot  than I'm in and out I remember going to get a CAT scan and then I am in and out again and when I wake up my sons in the hallway and he comes in and is crying that was probably the hardest time before this whole ordeal started to see your 15-year-old son cryping you're thinking what the hell did they tell you. After they receive the results of the CAT scan I was rushed to Maine medical in Portland were I met my surgeon Dr. Wilson came in and had a consult with me to let me know what's going on I had a peaches sized tumor and some bleeding on my brain and we would be doing surgery on Tuesday to remove it.  So the surgery was a success they were able to remove all of the tumor and they didn't see any residual cancer cells but just to be safe and sound they want me to do seven weeks of radiation with  Timador. As I said before I had a consult with the neurosurgeon and tuffs  medicine  school in Boston  she is the one who's recommending the radiation in the timajor for my course of treatment but it was also new and you're still absorbing the fact that when I had cancer so since then me and my husband are doing a lot of reading and research  has anybody had any luck with all natural treatments?  I guess I'm reading you can educate yourself but you can also scar the crap out of your self as well.  I've read things like well the patient would've died anyways but the chemo just made them go sooner  if you don't mind me asking anybody who's done this course of treatment how was it for you?  my dosing for the Tiimador is 140 mg seven days a week and I do radiation five days a week thank you for any imput you have that will help me in understanding my next steps in treatment

kathy

mflybrigge

Anaplastic Oligodendroglioma III for me

I was having issues concentrating at work and showing up late almost every day because of vertigo. It became so bad he drafted and issued me a letter for poor performance. I had plenty of sick time but my supervisor was concerned and insisted I see a doctor and get a note. (I thought was a usual bout of problems from sinus allergies). ENT sent me for CAT scan on my sinuses and they saw some "white mineralizations" on the bottom part of my frontal lobe. They explained this was usually indicitave of dead brain tissue caused by a tumor. I was sent immediately to the ER for an MRI. Hours later (late in the evening) I got the results. Very large tumor in right frontal lobe. My vertigo and headaches were caused by edema and the fact the tumor was pushing my brain around to the point where you could barely make out the midline.

So plopped in an ambulance and sent to a larger hospital nearby in Fairfax VA. Met a neurosurgeon and a couple of hours later I was in surgery. Apparently for 8-10 hours he did his best work and removed a tumor the size of a small orange. Yikes.

Suprisingly, I had no left side weakness or paralysis (I'm told this was unusual). I was in ICU for over a week only because they didn't like something in my urinalysis and something in my blood work.

Shortly thereafter (about a couple of weeks or so) I began 5 weeks of radiotherapy (5 days a week with weekends off). Other than the custom mesh mask they make to lock your head down, it wasn't too uncomfortable. I started losing my hair into the 4th week and shaved my head (after getting tired of vacuuming my pillows every morning). I also was taking Temodar. After several weeks of Temodar, I was done with treatment. Follow up MRIs and blood work were done every 2 months thereafter, stretching out to 4 months now (I declined a 6 month interval as I was comfortable with that).

After surgery both my oncologists and surgeons gave me 2-5 years before it would become fatal (with no wiggle room).

I have the 1p and 19q codeletions. It was explained to me that one would mean a better result in surgery (apparently they got 95% or better of the tumor out (as opposed to 80%) and the other one would mean a better response to the Temodar.

I never had any bad reactions to Temodar except some weakness. However I did end up with some edema which was severely uncomfortable (high sensitivity to noise and light). They put me on steroids for that. Most of my problems were caused by the steroids. Severe mood swings, and LOTS of overeating. I was so glad to get off of the steroids.

After about 3 or 4 months I had a couple of panic attacks (I've never had these). Being a good patient, I reported this to my neurosurgeon. He asked me what it felt like and was it a feeling of impending doom rising up from my gut? He described exactly what I felt but I didn't describe it like that. He informed me that it was probably a seizure and referred me to a neurologist. Neurologist sent me for EEG and discovered I was having complex partial seizures and put me on Carbomazeprine. Unfortunately he informed me I would have to stay on the drug for the rest of my life in order to avoid a major seizure.

Tumor first diagnosed (and surgery) in February 2014. So far, I've had no re-occurence.

I did retire medically from federal civil service. My main issues were memory retention and inability to complete or focus on complex tasks which my job required. Other issues were name/face recognition (ongoing) and "losing" words common previously in my vocabulary. This cause me to substitue words when I couldn't remember a work and long pauses in my vocalizations.

Other side effects: for about a week after surgery I found myself (to my family's chagrin) talking constantly almost to the point of babbling. Apparently it was a side effect of the surgery. Oh, and my time on the steroids caused an end to a relationship.

49 yr old male

Oh, my boss probably saved my life and I thanked him profusely. Once he found out about my brain tumor he rescinded the letter.

djwood84

It's hard to keep long term statistics

The longer the timeline gets, 5+ years, the more external factors that can muddy the data.  I was told 5-7 years, and when I pressed for more info, it was basically "After 7 years we don't keep the statistics because there's too much noise in the data."

Could not agree more with the poster who said "Your doc is quoting statistic but your son is not a statistic."  He's not, there's no % calculation for the human spirit.

smallfamily4

Anaplastic Oligodendroglioma Grade III

Hi, I have been reading different sites including this one. My wife (40yrs) had the seizure on June 2016 and was operated on Oct 2016 with Anaplastic Oligodendroglioma Grade III. The surgeon had removed 95% of the tumor. She has 1p19q co-deletion and went through 6 weeks radiation and now she is taking PCV and is in 3/6 cycle. We changed our life style and started taking 90% of organic food and she even stopped eating meat, except may be once a month or none. She had the MRI in Mar 2017 and showed the signs of shrinkage of tumor. Last week she even started taking some natural medications, which supposebly may shrink and stop the growth of tumor cells. Hope every thing goes fine with the treatment. We have to only watch, do our best, keep hope and trust in god. Thank you all for your support & feedback.

 

bobbyd009

wife has grade 3 oligo

My wife had  surgery on  march 4th 17  and they took as much as they  could without doing any  damange .She completed 6 weeks of temador and radation and is going for baseline mri  31st  of may  then starts june  12th  temador 5 on 23off for next year . Anyone who has info on anything please let meknow and also what are the best  foundations for  help . She is no longer working thanks and god bless you all !

gtginri

Never give up; Keep a positive attitude

 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.  

 

aep2820

bobbyd009 said:

wife has grade 3 oligo

My wife had  surgery on  march 4th 17  and they took as much as they  could without doing any  damange .She completed 6 weeks of temador and radation and is going for baseline mri  31st  of may  then starts june  12th  temador 5 on 23off for next year . Anyone who has info on anything please let meknow and also what are the best  foundations for  help . She is no longer working thanks and god bless you all !

I was originally diagnosed

I was originally diagnosed with a stage II Oligodendroglioma in October of 2004. In 2005 I received partial resection of the tumor followed by radiation (30 treatments over 6 weeks) along with the 5 days on 23 days off Temodar 360mg schedule for 1 year. I repeated the Temodar chemotherapy treatment after recurrence in August 2008 after my second child was born And then followed with the radiation treatment again. Then again in 2011 I did another year round treatment of Temodar, this time 2 weeks on 2 weeks off at 380mgs. I did a "maintenance round" of temodar in 2015 to slow any growth occurring at the time with a 160mgs every day for 6 months. That one was hard. I am currently on radiation treatment (30 treatments; 8 completed so far) along with 1 full year of taking Temodar 160mgs every day. Blah! I showed significant growth on my MRI in August which is why I have had to start treatment again. I do have the gene deletion which I've been told helps. I was 25 years old and had just had my first child when I was diagnosed. I was told I could hope for 7 years to live if surgery and treatment went well. It has been almost 13 years (nearly double my life expectancy) since I was diagnosed and I plan on living much longer! Yes symptoms are challenging at times especially during treatment but I am still able to take care of my family of 4 and live a happy life. I am lucky that I have not had to work during this time and I have a wonderful husband who is happy to take care of me and step in taking over my duties when needed. I also think being able to nap whenever I want a great contributor to my health. Sleep is so very important to brain issues (like a tumor). Also, I credit my doctor with his approach of "maintenance treatment" to really stay on top of any growth as to why I have lived so long.

I understand everyone's experiences with a brain tumor is different but for me it was really scary at first and yes I definitely had my down days but overall when I look back over the last decade and a few years, I don't remember thinking about my cancer constantly or when I was going to die from this illnes. I remember living my life and being happy most of the time. When you have a hangnail (not that a brain tumor can be compared to a hangnail) you only think about it when it's bothering you. The same goes for Oligodendrogliomas. Have hope! New research is being done all the time. The American Brain Tumor Association has a lot of information and help on their website www.abta.org. I have found it to be useful to me and to help others understand what is happening to me. The hospital I attend (Huntsman Cancer Institute) for treatment and to see my team of doctors has been great in offering up information and patient support therapies (yoga, massage, counseling for loved ones, etc...) to help with symptoms for both myself and my husband/caretaker. Maybe your wife's hospital has similar benefits. I wish you and your wife the best of luck, hope and love during this trying time and know that I have put you and your family in my prayers. Please ask if you have any questions and God bless.

MeeCheeAm1975

Sabaq1054 said:

Lifespan - Anaplastic Oligodendroglioma Grade III

My wife was diagnosed with this disease in Feb 2010. She was operated upon at JHH Baltimore in 2012.  She went through rehab in US and returned home in Pakistan

She has had 30 radiation cycles with Temodar and subsequently one year Temodar treatment @ 5 on 23 off.

Since then she has been having near normal life though she has lost about 30 lbs, at times remain dull and lethargic and has memory problem as the tumor was in her frontal lobes.

At the time of her crianotomy doctors suggested 8 to 10 years normal life.  Let's pray it is better than that.

Your son is much younger in age and will have strength, will and courage to do much better. He needs to be optimistic and so you all.

Update on Wife

Dear Sabaq1054

I am reaching out to you because your story seems similar to mine and my husbands and where we are at right now. 

He was diagnosed with Stage 3 AO in May 2017. He has since has 2 resections, 30 radiation cycles with TMZ and we go for him scans, bloodwork and check up tomorrow and for them to put him on TMZ for 1 year 5days on and 23 days off. 

He is 41 and if course all we can do is be strong for each other.  

The post I am responding to is 3+ years old. I am hoping that you can respond to me truthfully so I might know what lies ahead for me and for us. 

I know everyone is different but I'm a realist and it helps me to prepare and be as strong as I could possibly be. 

MeeCheeAm1975

mflybrigge said:

Anaplastic Oligodendroglioma III for me

I was having issues concentrating at work and showing up late almost every day because of vertigo. It became so bad he drafted and issued me a letter for poor performance. I had plenty of sick time but my supervisor was concerned and insisted I see a doctor and get a note. (I thought was a usual bout of problems from sinus allergies). ENT sent me for CAT scan on my sinuses and they saw some "white mineralizations" on the bottom part of my frontal lobe. They explained this was usually indicitave of dead brain tissue caused by a tumor. I was sent immediately to the ER for an MRI. Hours later (late in the evening) I got the results. Very large tumor in right frontal lobe. My vertigo and headaches were caused by edema and the fact the tumor was pushing my brain around to the point where you could barely make out the midline.

So plopped in an ambulance and sent to a larger hospital nearby in Fairfax VA. Met a neurosurgeon and a couple of hours later I was in surgery. Apparently for 8-10 hours he did his best work and removed a tumor the size of a small orange. Yikes.

Suprisingly, I had no left side weakness or paralysis (I'm told this was unusual). I was in ICU for over a week only because they didn't like something in my urinalysis and something in my blood work.

Shortly thereafter (about a couple of weeks or so) I began 5 weeks of radiotherapy (5 days a week with weekends off). Other than the custom mesh mask they make to lock your head down, it wasn't too uncomfortable. I started losing my hair into the 4th week and shaved my head (after getting tired of vacuuming my pillows every morning). I also was taking Temodar. After several weeks of Temodar, I was done with treatment. Follow up MRIs and blood work were done every 2 months thereafter, stretching out to 4 months now (I declined a 6 month interval as I was comfortable with that).

After surgery both my oncologists and surgeons gave me 2-5 years before it would become fatal (with no wiggle room).

I have the 1p and 19q codeletions. It was explained to me that one would mean a better result in surgery (apparently they got 95% or better of the tumor out (as opposed to 80%) and the other one would mean a better response to the Temodar.

I never had any bad reactions to Temodar except some weakness. However I did end up with some edema which was severely uncomfortable (high sensitivity to noise and light). They put me on steroids for that. Most of my problems were caused by the steroids. Severe mood swings, and LOTS of overeating. I was so glad to get off of the steroids.

After about 3 or 4 months I had a couple of panic attacks (I've never had these). Being a good patient, I reported this to my neurosurgeon. He asked me what it felt like and was it a feeling of impending doom rising up from my gut? He described exactly what I felt but I didn't describe it like that. He informed me that it was probably a seizure and referred me to a neurologist. Neurologist sent me for EEG and discovered I was having complex partial seizures and put me on Carbomazeprine. Unfortunately he informed me I would have to stay on the drug for the rest of my life in order to avoid a major seizure.

Tumor first diagnosed (and surgery) in February 2014. So far, I've had no re-occurence.

I did retire medically from federal civil service. My main issues were memory retention and inability to complete or focus on complex tasks which my job required. Other issues were name/face recognition (ongoing) and "losing" words common previously in my vocabulary. This cause me to substitue words when I couldn't remember a work and long pauses in my vocalizations.

Other side effects: for about a week after surgery I found myself (to my family's chagrin) talking constantly almost to the point of babbling. Apparently it was a side effect of the surgery. Oh, and my time on the steroids caused an end to a relationship.

49 yr old male

Oh, my boss probably saved my life and I thanked him profusely. Once he found out about my brain tumor he rescinded the letter.

Update on You

Greetings mflybrigge

I hope you are doing well.  I am reaching out as my husband was diagnosed with Stage 3 AO to his left occipital lobe of his brain. 

You sound as sturdy and resilient as he is. He is 41 and currently about to come off of his 45day break following 2 craniotomies, 30 radiation treatments and 45 days of TMZ. He is only on Keppra right now but they are going to put him on 5 days of TMZ a month for 12 months. 

Can you please share with me how you are doing now? My husband's tumor was very large and they only managed to get out a total of 77% through surgery. He shaved his head after week 4 of radiation and continues to do so. He jokes that Santa Claus may give him back his hair if he is good for Christmas. 

All I can do is give me all to be strong and supportive for him. For me that means keeping it real, to not be mislead by false information and to make sure I have good facts. 

I hope you can help. I'm looking forward to your response. 

MeeCheeAm1975

bobbyd009 said:

wife has grade 3 oligo

My wife had  surgery on  march 4th 17  and they took as much as they  could without doing any  damange .She completed 6 weeks of temador and radation and is going for baseline mri  31st  of may  then starts june  12th  temador 5 on 23off for next year . Anyone who has info on anything please let meknow and also what are the best  foundations for  help . She is no longer working thanks and god bless you all !

My husband has Stage 3 AO with positive co-deletions

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. 

Dcblacqua

cindysuetoyou said:

Thank you to all for your replies
Thank you for replying to my post. I don't really know how this site works so I hope everyone can see this and know that I appreciate your comments and support. PBJ Austin, thank you for reminding me that the drs go by statistics and not by individuals. We personally know someone who is a ten year survivor of pancreatic cancer, and his dr was absolutely positive that he would be dead in 6 months at the longest. He's fine today with no sign whatsoever of any cancer. So I know that the drs can't be sure of lifespans.

PBJ, I am SO GLAD to hear that your sister is doing so well! I am so glad for her and for you and your whole family. That is great news, and also it's a huge encouragement to me.

We are doing good as far as living life to the fullest. I am so proud of my son. He is working, playing basketball, working out at the gym......my son is very brave and he is believing that he could beat this. Our whole family believes this too and we are all standing with him. I can't even begin to imagine how awful it would be if no one believed with you that you can beat it. I pray every day that God does a miracle and my son does beat this. I also pray for hope and strength for us. I personally started out good...all strong and positive. It seems like in the first part when we were hearing all the terrible stuff, going thru surgery, radiation, etc, I was in crisis mode and I was super strong and fighting hard. Now that it's back to daily life, I feel like I am unravelling. I have to fight hard every day to be positive and stay strong and keep hope. I have been researching all over the Internet and I think it's hard on me. But it's not about me....it's about my son and our family and making sure that we are all positive and still fighting hard and loving each day that we have.

Thank you again, to all of you.
Cindy

Survival anaplastic oligodendriglioma

my 38 yr old physician husband was diagnosed after taking a fall while skiing and having a seizure on the slope. By that night we were told he had a significant brain tumor. Four months later neurosurgeon at Barrow Neurological Institute resected the tumor. Stereotactic holographic gamma knife. He went to MD Anderson for consult. 33 radiation treatments. Two years later some right sided paralysis due to radiation affected motor cortex. All this was 25 years ago w no recurrence. Has a bit of expressive aphasia, no use of right hand or forearm, walks w right leg AFO. Drives. Bit of flat affect. No critical thinking deficits. We were told 3-5 years.