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Grade III: Anaplastic Oligodendroglioma lifespan?

cindysuetoyou's picture
cindysuetoyou
Posts: 511
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.

overtherainbow
Posts: 2
Joined: Jul 2012

It varies from person to person. My husband was 34 when diagnosed. He lived 7 years and made them the best years of his life.

You know, many people live long miserable lives. He lived 41 years and he made sure those last seven were some of his best.

All the best to you and your family!

Struggling Girl...
Posts: 3
Joined: Jul 2012

Hello,

I am 27 years old and my partner is 29 years old. We have only been together a year but we fell head over heels in love the day we met and have been inseparable since.

3 months ago he had 2 nocturnal seizures whilst in bed with me and as time unfolded it became apparent it was a tumor. He had a partial resection, they could remove only 50% of it as it is was very large and had invaded inoperable parts of the brain. The results showed that he had a grade 3 oligondendroglioma.

I have stuck by his side over the last 3 months, taken endless time off work, been to every appointment and spent every night with him and his family.

What I am now feeling is an overwhelming sense of fear about the life that lies ahead. They have given no prognosis beyond it is unlikely he will live more than 10 years. It terrifies me as it certainly not the way I imagined meeting the man of my dreams to be, and it doesn't offer the stability I had hoped for. He won't be able to support me and children as he likely will be off work a lot himself? I'll need to be mother, father, carer and breadwinner.

I just want to hear from someone who has been through it, how hard it actually is? Whether you get used to it? and how worthwhile it feels when it ends?

I would really appreciate your response?

Thanks

Dave27
Posts: 1
Joined: Oct 2007

Hello,
My wife was diagnosed with a Grade 3/4 AO in October 2006. The large tumor was removed from her left frontal lobe followed by 6 wks of radiation and 2 years of Temodar. She has had an MRI every 3 months since January 2007.

A couple of years ago they found a small tumor in her right frontal lobe. It was treated with cyberknife and chemo. The chemo was Avastin and Irinotecan(sp?)shortly after starting the chemo she had several seizures. They are under control with meds and she has not had a seizure since. Because of the seizures chemo was stopped for several months.

Earlier this year she was diagnosed with a new tumor in her cerebellum. She was started on Avastin and has been on that for four months. Her last MRI showed that the swelling associated with the right frontal lobe tumor was down with no other changes there. The cerebellum tumor had not changed so good news there. She will have another MRI in November.

My wife is 64 years old. Her attitude remains positive and we live day by day trying to make each day as positive as possible. We have signed up for a cruise this coming March. While on the cruise we will celebrate our 45th wedding anniversary and plan on celebrating many more.

Almost every comment/question on this blog concerns life expectancy. There is no way anyone can tell you how long a person will live. Like they say, you could walk outside and get hit by a car, something could fall out of the sky or you can have a heart attack. Please don't let that be the focus of your life with your partner. Spend each day loving each other and enjoying every minute you have together. Listen to what the doctors say about treatments and make sure that he has frequent follow-up visits.

You have to take care of yourself and make sure you stay healthy, also. You are in a difficult situation and have reasonable concerns. I would discuss them with your partner and let him know what your concerns are. They are valid. You might also want to attend a local support group or even discuss your concrns with a doctor.

I wish you the best and hope that you get the support you need.

sadinholland
Posts: 243
Joined: Apr 2011

Thank you Dave27! I needed to hear that.

overtherainbow
Posts: 2
Joined: Jul 2012

It varies from person to person. My husband was 34 when diagnosed. He lived 7 years and made them the best years of his life.

You know, many people live long miserable lives. He lived 41 years and he made sure those last seven were some of his best.

All the best to you and your family!

loewing
Posts: 2
Joined: Nov 2012

Cindy, I am a survivor of 11 years with the same cancer, mine was in the
right temporal lobe. after surgery my doctor gave me most 6 months to life
we fired him and went to chicago. i was told that this cancer reacts good
with procarbazie, vincrinstine. I am even happier today to pay taxes.
best of luck

cindysuetoyou's picture
cindysuetoyou
Posts: 511
Joined: Dec 2009

Thank you for your post. I am always so happy when I read that someone is overcoming and winning the battle against cancer--especially oligodendrogliomas. You keep up that great fight!

It breaks my heart to write this--my son that I love with all of my heart lost his battle. Almost 3 1/2 years after being diagnosed, he died on October 15th. He fought so hard and he was so brave and courageous. I'm sick with grief and I'm trying to pick up the shattered pieces of my life.

It brings me a measure of happiness, though, when I read accounts like yours and I know that someone has been able to win and to live.

Love and blessings to you
Cindy in Salem, OR

dmercer1
Posts: 16
Joined: Mar 2011

Cindy, I want you to know I spoke your name Sunday during my sermon. It was the first Sunday of our Advent season candle lightings. Our theme for the day was "hope." I read a number of prayers I've written over the past year to my fellow brain tumor travelers. I pointed out that they all have the theme of hope. What we desperately cling to is the hope that this disease will not have the last word. That word belongs to God as he will one day speak over our brokenness the words he spoke over his son and the words that fuel our hope, "Arise, my love, the grave no longer has a hold on you. No more death's sting no more suffering. Arise."

cindysuetoyou's picture
cindysuetoyou
Posts: 511
Joined: Dec 2009

Thank you. Your words mean so much to me and bring me comfort. I know that you speak the truth, and I believe that I will be reunited with David one day. It's just that right now, right here, I miss him so much.

Love and blessings,
Cindy

Bettysue
Posts: 1
Joined: Feb 2013

I am so sorry to read your sad news. We are like the flowers in the field, here today and gone tomorrow.

My beloved daughter has a grade 3 oligo and we are now 9 months into this journey that has brought  terror, pain and fear. My life has completely changed, nothing else matters.

I know you will be missing your boy desperately.

I have been researching in the bible about what happens after we die, because I know I will need to have some clear idea if I am to handle the death of my daughter. As a family, we are hopeful and positive day to day. However, as a practical person, I do wonder about the future.

After reading and studying, I have come to a 'kind of' understanding of some things about after death, that is sensible, a little comforting, and feels real, for me as a mother. Tell me if you would like to know more about this.

Bettysue 

 

Cassie_GreenEyes
Posts: 1
Joined: Feb 2013

My Mom was just diagnosed with this. I am so sorry to hear about the loss of your son to the horrible disease. I pray that my Mom has some quality years left. We are taking everything one day at a time. Today she feels good and that is all that matters. Praying for everyone battling this.

 

 

annslater1's picture
annslater1
Posts: 1
Joined: Feb 2013

I came across your article and it saddened me. In 2004, when I was only 19,  I was diagnosed with an anaplastic oligodendroglioma stage 2-3 which was surgically removed in 2005. I went through chemo(Temodar) and radiation therapy and went into remission May of 2005. I want to tell you that 9 years later, I am still here and thriving CANCER FREE!

 

There IS hope out there...Do not let any doctor make you or your son feel otherwise. 

scorpio79
Posts: 25
Joined: Nov 2012

Congratulations Ann....i am sure you will survive a 100 years more and this dreadful cancer will never come back

 

My brother in law was 29 and he passed away last week...he had Oligidendroglioma stage 3 and it spread to his spine unfortunately ...we tried a lot but the tumor kept coming back every 2 years...The world came to an end for my inlaws to lose their son

Just curious...do you have the 1P 19Q deletion...

 

All the best

 

sadinholland
Posts: 243
Joined: Apr 2011

I have been reading post regarding olio grade 3 on this site for over 2 years now. It seems that most people either have the deletion or no deletion at all. My husband has 1 deletion. Anyone else out there with just one deletion? It has been over 2 years now and he seems to be doing ok. Not 100% but ok. I am still so scared of the unknown. It sounds like things could just change overnight, no warning.

scorpio79
Posts: 25
Joined: Nov 2012

Hi I am so sorry to hear that .......My BIL was just 29 and he was detected with Oligodendroglioma 6 years ago with no 1P 19Q deletion..I have read so many posts...this disease reacts differenty with everyone..in 2009 my BIL has a 2 craniotomoy and the tumor was removed 100% but grew back in 2011 and he went through a 3 operation , chemo and radiation....4 months ago he was admitted to the hospital with flu and we then figured out that his tumor now had spread to the spine (Although there was no regrowth in his brain)...there was a metastatsis and the cancer cells had spread...he died a few days ago

Everyone is different...i have seen people live 10-15 years...my BIL was unfortunate...stay strong i am sure your husband will do good...have you though of alternate medicine like Homeopathy..that may help if you are husband is now stable...it does not have any side effects

All the very best..

 

 

sadinholland
Posts: 243
Joined: Apr 2011

My condolences to you, your sister and your family. It is very difficult watching a loved one suffer this illness. It affects the entire family when one is diagnosed with any type of cancer. I am still in shock and its been over 2 years. My husband was always healthy. He didn't even catch colds. As far as any other treatments, if his doctor doesn't suggest, he won't try it and since he doesn't allow me to talk during his appointments or to his doctors period, I am not able to ask his doctors about ANYTHING! He says he is a grown man and is capable of discussing his medical condition with HIS doctors. He said if he wants ask know anything about his health, he will ask himself. Again I am truly sorry for the loss your family has suffered. i will continue to pray for everyone on ths site.

 

misskittycat68
Posts: 3
Joined: Jul 2012

yes my husband only has the deletion on 1p...first diagnosed in oct of 1998 at age 35 had surgery to remove the hole turmor followed by 30 radiation treatments no chemo back then... Went 14 years before  first recurrence had surgery end of april 2012 to remove 90% of the tumor it is located in the right parietal lobe close to motor strip now has partial paralysis on left side ... also had re-radiation  28 treatments along with chemo temodar during it. has been on temodar for the last 7 months just had mri march 1 and told march 6th the tumor is growing again... We will get a call on Monday to see what will happen now... Kinda of strange to go that many years in remission and have it recur again almost year apart... But he had 14 wonderful years of remission which is a very long time.... Good luck to you!!

falcon69
Posts: 25
Joined: Feb 2012

My then 31  year old son had a gross total resection of a grade II oligodendroglioma on 12/23/11. Fortunately he does have the favorable deletions. His oncologist employed the "wait and watch" approach, saving chemo/radiaiton for possible recurrence. He's been on the every 3 month MRI schedule. He stated that if no regrowth was noted at the 6mos  mark it would likely be several years out until recurrence. Well, in late 2012 "something" started showing up on the MRI and in January 2013 it was confirmed that there was regrowth. He had a 2nd surgery on Feb 6 and the final path report confirmed that the tumor had progressed to a grade III anaplastic oligodendroglioma. He begins the PCV course of chemo tomorrow. There will be 4 cycles and then he'll begin radiation. He is  extremely healthy otherwise and suffered no cognitive or physical side effects from the surgeries or the tumor(s).  He plans to go to work through treatment, but we will have to see how that goes. It just goes to show that it is impossible to try and predict what these tumors will do. You just have to stay positive, carry on with life, and fight the disease with everything you've got!!

 

Amzinglyrndm
Posts: 1
Joined: May 2013

I am a 33 year old woman DX June 2010. 2 Craniotomies later that year I was fired, no longer had insurance or a way to see my team of Drs. Here I am later without the Rads or Chemo and still inoperable tumors remaining in my right temporal lobe. At first the Neuro said you can live with this for up to 14 years, I told him that they say I have already had this tumor growing for 10 years so hes optomistically playing God and giving me 4 years. I told him I had plans when I was 40 an 50 and plan to stick around. My ppint is there are no time Lines with anyone. I am invovled in another email group that have 19 year survivors and going strong. There is always hope and the Journeys along the way are what give us all dealing with this Strength we did not know we had. I have remained untreated as far as the Treatment options they had planned for me to date. I have Just been approved for SSD and now my Journey continues. I believe we all at some point if not still do look at those silly time lines and Wonder. That is a normal reaction and for me keeps me Fighting even HArder to beat the Odds, Clear the Statstics. There is Life still to be Lived and every Moment counts no matter how each and every one of us feels or doesnt. We are all here for you to help guide you through the seemingless questions and anxieties and fears that will arise. Standing Tall with you as you are a warrior to. My heart goes out to you and your Family, I admire your ability to face this with your son and get more information caring is very important in this Journey. 

sadinholland
Posts: 243
Joined: Apr 2011

Thank  you for your post! It is very inspiring. I am doing my best to stay positive, especially since my husband is doing so well. I do hope now that you have been approved for SS, you will be able to continue to get whatever treatment your NO requires. Good luck and God Bless!

baileybiff's picture
baileybiff
Posts: 1
Joined: May 2013

I was told in 1994 I had a high grade (11) tomor in 1994, and this was reconfirmed my my oncologist some years larter when he told me he had had his results checked and said I was his little (6'5") miracle, in 2011 I was told by this successor that It was infact a low grade (111) Glioma. but after 19 years I feel that I have outlived the prognosis for either grade! Now I am only the patiant so am not given most of the details I am just going in what little I can remember or have recently been told by my Mac millan nurse and latest incarnation of Oncologist. Ihave never been given a diagnosis or prognosis in writing, and since my operation was in the frontal lobes, most of my short term memory is to say the least shoddy, I only seem to have remembered what I had repeated many times to my loved ones shortly after. I hold these memories to be true. If you need any further info then please feel free to contact me through this site if allowed

hanginginute
Posts: 1
Joined: May 2013

My husband was diagnosied with a brain tumor in March 5th. 2003. Was in surgery on the 9th. with a very large anaplastic oligodendroglioma grade 3... after 33 treatments of radiation followed by months of chemo CCNU he is today cancer free. He does have some visual problems every now and then but his last MRI they told him he was cured. So Yes there is life after 10 years. He is going strong yet today.

mlynn53
Posts: 1
Joined: Aug 2013

Bless you and your son.  I was 30 years old when I was diagnosed - it felt like someone had pulled the rug out from under me.  I went through tumor removal, 3 months of radiation twice a day and 18 months of chemo.  I am now 53 years old (the doctor also told me I had 3 to 5 years to live).  My daughter is 32 and I have a grandson who is 6 and the love of my life Madalynn who is 2.  After 8 years I finally found the courage to send a note to my oncologist.  It was a very tough time for me and truely an experience I will never forget.

My hair fell out only in the areas where I received radiation.  Chemo made me sick until they adjusted the drugs.  During this time I tried to eat right and exercise when I felt up to it - I made my daughter and family members my focus.

Remember stay strong and be the one who shows them it is not always a fatal diagnosis.

RogerB40uk
Posts: 5
Joined: Aug 2013

Hi .... my thoughts are with all of you who are suffering, and with your loved ones(also suffering)

Five and a half years ago I lost my wife of 33years, to an aggressive brain tumour which carried her off 10 weeks after I first noticed symptoms ... so quickly that I never got around to finding the name of the beast.

But to keep in perspective the predictions made (unwisely, IMO) by some about expected survival times, which are so frequently proved incorrect, I'd recommend reading the article named in the heading and which can be found here :  http://www.phoenix5.org/articles/GouldMessage.html

The writer was one who 'beat the odds' (mesothelioma - median survival of 8 MONTHS) and lived for TWENTY more years (finally succumbing to a totally unrelated cancer)!

Be well and stay positive.

Roger (Stage 0 CLL, diagnosed Feb '12)

ck_jordan@bells...
Posts: 2
Joined: Sep 2009

Hi Everyone,

My name is Cindy and I am 51 years of age. In 2009 I was diagnosed with a grade 3 anaplastic oligodendroglioma. i went to Duke medical Center located in Durham NC. They did a tumor restion and a genetic test. I was missing a gene qp19 i think. Since i did not have this gene so Temodar was the only treatment suggested. I was on the temodar for 1 year 5 days on and 23 days off. No radiation. i am glad to say I am doing well. I continue to have MRIs every 3 months. My tumor was located rt frontal lobe. If anyone needs some information about radiation therapy or gamma knife I have a freind who is a Radiation therapist. She would be happy to provide you with any information. I am a MRI technologist so this did help me to select a great surgeon. Staying positive and laughing alot does wonders for you. i also got a small dog. he has brought much happiness in my life.

 

Cindy

mccindy
Posts: 82
Joined: Jun 2013

It is always wonderful to hear about someone who is successfully beating this disease.  I'm glad to hear you are still having clear scans and doing well.  I'm assuming the deletions you are referring to are the 1p19q, since those are fairly common with oligodendrogliomas and respond well to chemotherapy.  I hope you continue to have many more years of clear scans! 

I have three dogs myself and they surely do bring a lot of joy to a person's life. 

Sabaq1054
Posts: 3
Joined: Feb 2013

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.

ravi kiran
Posts: 1
Joined: May 2015

hi,

   my friend was diagnosed with stage 2 oligodendroglioma in 2004 december and he is doing great now!!!!.........

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