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Grade III: Anaplastic Oligodendroglioma lifespan?

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

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

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

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

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

Thank you to anyone who can encourage me.

JDRinAz
Posts: 2
Joined: Apr 2012

I have been dealing with the different stages for 20 yrs. Don't get involved with Dr's predictions please! Good Dr's won't predict. They are wrong all the time. Find great success stories, and live based on those. I was told 5 yrs originally, so I spent 5 yrs getting ready to die. Patients are heros---just go be one of them.

amyshait
Posts: 1
Joined: May 2012

first of all happy mothers day.

I live with a man who at 36 was dx with a grade 3 oligo
same tx with radiation and surgery and temodar, as your son.

This June will be 5 years.
I am silently ecstatic, shocked daily and am truly amazed.
I never should have listened to a word the doctors said....
i wish i can go and forget their theories, none proved true.....

lalat
Posts: 1
Joined: May 2012

It very nice that you have posted regarding your son's condition here. I hope that he will be in his best of health as long as god's willing so that he can enjoy life as long as he could. Allow me to introduce myself. I am not a cancer survival but I am a neurosurgical trainee - in my final year. Dealing with cancer patient is one of the things i have to do everyday. Indeed anaplastic oligo is a rare form of brain tumour which I currently have one patient i just operated days ago. She was a bubbly charming 7 year old girl who presented to me for bleed in her brain. Fortunately, after her operation, she came out well without any neurological deficit. My worst fear came today as her histopathological report came back - anaplastic oligo. Her tumour was large and situated in the important areas that controls her limb movements (internal capsule) and what made it worst is that there is not much good plane between the tumour and the normal brain, so only a subtotal resection was achieved, in a bid to preserve her intact neurology - say 70-80% resection. I would prefer my patients to be happy with good quality of life, rather than complete excision but at the expense of compromised neurology.I now know that she need radiotherapy and chemotherapy as the next step of treatment.

Obviously, and naturally will come the next question from the family regarding the prognosis or life span... how long is her life? As some of you pointed out, whatever answer we give is based on the evidence gathered from numerous studies and articles and yes, statistic. Progression free survival, overall survival, median survival are just numbers calculated from the data collected from the studies and it actually give us an idea regarding whatever data we are looking at, so we will have a overall picture of what to expect from the natural history of the disease progression. But this doesn't mean that the numbers are the whole truth. In medicine, there is always exception. Yes, there are few numbers occasionally, patient live beyond the number of years stated in the statistic and its actually good news. For me, there is always hope. If you don't try anything, all hope is loss, its better to try and fail rather than to fail to even try.

Medical field is advancing day by day with more and more research result coming out, findings of a new therapy for certain illness, and naturally the treatment option for certain illness will increase the outcome of our patients. I don't think doctors are here to dictate how long you can live if u have certain disease but i belief, we are here to inform you what the medical field has found today, to inform you the current information regarding the disease and its treatment option with the expected result. The results will never be the same in some illness as things improves over time especially when the tumour research has gone into molecular genetics. But have in mind, that research takes years to bear result. Its because of patient, that a research could be carried out for the benefit of future patients. The hero is actually the patients.

I take great pleasure reading from this forum so that hopefully i can view a illness from the patient's perspective and see to the needs of patient and their family.

I felt obligated to voice out my opinion when i saw some reader commended on not to believe what a doctor says. He/she may be frustrated at the advice of the doctor regarding some information citing that the knowledge is outdated due to old statistics but i am sure the doctor did his/her best to inform their respective patients based on the best available data. From this, it struck me that I have to constantly be reminded that there is always new things in medicine for which i need to be constantly on my toes regarding any new valid information regarding any illnesses or i will be quoting the outdated information to my patients.

Anyway there is always hope and thanks all for sharing valuable information regarding the disease from the patient's point of view. Hopefully with these extras, i would be able to holistically render the best available treatment for my patient.

From a doctor's point of view, every patient is an individual and no individual is the same. Its really difficult to see my patient loosing the battle especially in tumour cases, even so when you know nothing much u can offer after battling the illness with whatever known medical ways has to offer. On the other hand, the smile and joy of a patient or their family is the best reward a doctor can have. That's what keep me going and THERE IS HOPE.

Hope for the best for you and family and all the rest out there. Cheers!!

feelinggood's picture
feelinggood
Posts: 24
Joined: Dec 2004

Still hanging in there:

1994: Presented with a seizure. Surgery for grade II Oligo with no further treatment- 18yo - Right frontal lobe - University of Michigan

http://en.wikipedia.org/wiki/Oligodendroglioma

2000: Surgery for grade II/III Oligo plus PC (without the V) chemotherapy. 1P/19Q deletions found University of Michigan

2004: Surgery for grade III Oligo plus one year of Temodar 5/23 - University of Michigan / Cleveland Clinic / Mayo Clinic

2007: Blood Brain Barrier Disruption program with Carboplatin, Melphalan and Etoposide Phosphate - Oregon Health and Sciences University / MD Anderson

http://www.ohsu.edu/xd/health/services/brain/getting-treatment/diagnosis/brain-cns-tumors/treatment-options/medical-therapy/blood-brain-barrier-disruption.cfm

2009: Brain Surgery at University of Michigan Hospitals – all visible tumor removed

2009: Proton Radiation at Mass. General Hospital

http://www.massgeneral.org/radiationoncology/AboutProtonTherapy.aspx

June 2009-October 2010: Vaccination clinical trial at University of Pittsburgh – Hillman Cancer Center

http://www.neurosurgery.pitt.edu/news/2006/tumor_vaccine.html

October 2010 - Gamma Knife Radio-surgery for focal recurrence - Hillman Cancer Center

August 2011 - Possible recurrence noted on MRI

May 2012 - Surgical removal at UCLA plus donor T-cell clinical trial

http://www.virtualtrials.com/pdf/ImmunotherapytrialNCT01144247.pdf

misskittycat68
Posts: 3
Joined: Jul 2012

Hi Cindy,

My husband at age 35 was diagnosed with the same tumor anaplastic oligodendroglioma grade 3( he was having seizures ) on his right parietal area in oct of 1998 it was ( they said completely) removed followed by six weeks of radiation. He had his first recurrence the end of april this year he will start re-radiation for six weeks and temodar for the full six weeks during radiation than they said one week out of the month for up to two years. Also back in 1998 they did not check for the deletions but this time they did and he only has one deletion on #1 . The studies they have done show most live a average of 11 years with both deletions but my husband only has the one deletion on #1 so I dont know what to think of that. They told us back in 1998 up to five years but its been almost 14 now so dont give up hope god bless you and your son!

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: 248
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: 514
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: 514
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: 248
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: 248
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: 248
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: 81
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.

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

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

 

sadinholland
Posts: 248
Joined: Apr 2011

How are you? A lot has been going on with my husband. It's been 5 years and he has been on chemo most of them because of growth. He is now taking IMRT radiation again, which I am totally against. He does whatever his doctors suggest. He thinks they know best and he refuses to get second opinions. Before the treatment, he had some memory issues and fatigue, now since the treatments, he has leg weakness and has trouble walking, and he somwtimes has trouble word finding and comprehending some things I talk with him about. I am very worried and scared. I am great fun he has done so well for so long considering the doctor gave him the same diagnosi, that 2 1/2 to 3 year speech over and over again. He had no symptoms with is recurrence. please pray for us both! I lost my 54 year old brother two days before I found out about my husband's progression. It's been a tough couple of months. Heavenly Father please continue to bless our family and heal us in the name of Jesus. Amen

rwberne
Posts: 1
Joined: Nov 2015

   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!

 

hernandez_juan
Posts: 1
Joined: Aug 2016

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

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!!!!.........

rmalone
Posts: 1
Joined: Dec 2015

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.

Greenough
Posts: 1
Joined: Sep 2016

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. 

Kathy03222's picture
Kathy03222
Posts: 6
Joined: Sep 2016

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 ass  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

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