Grade III: Anaplastic Oligodendroglioma lifespan?

feelinggood

lalat said:

Dear Cindy
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!!

18 years and counting
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

artafera

poe51987 said:

bethany
My husband had the same thing happen. He had his fourth oligodendroglioma removed in Jan of this year and returned in march and it had grown larger than a softball. The tumor has advanced to stage 4 and that is why it is growing so quickly. Darren cannot have anymore surgeries and the fourth caused a stroke he is just 43 and my world. It breaks my heart that this disgusting thing called CANCER can just come in and steal your life. God bless you and all of us.
Liz

Similar Story
To poe51987: I found it very interesting that your story is practically identical to our story. If I could only talk to you and find out where you are now, this would be most helpful. My husband too had a stroke during his 2nd surgery at the age of 43. He has now had 3 resections and a surgery to place a shunt last February. We are at the end as my husband no longer wants chemo or any further surgeries. As of his last MRI in May, he has developed another lesion in the frontal lobe measuring at 3cm already!! I am really scared now and don't know what to expect. We have two daughters ages 11 and 8 who have accepted the outcome of this long journey. It has been 12 years.

misskittycat68

AO GRADE 3
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!

misskittycat68

poe51987 said:

bethany
My husband had the same thing happen. He had his fourth oligodendroglioma removed in Jan of this year and returned in march and it had grown larger than a softball. The tumor has advanced to stage 4 and that is why it is growing so quickly. Darren cannot have anymore surgeries and the fourth caused a stroke he is just 43 and my world. It breaks my heart that this disgusting thing called CANCER can just come in and steal your life. God bless you and all of us.
Liz

anaplastic oligodrendroglioma grade 3
my husband was 35 ( 1998) had his first surgery they said removed all of it followed by radiation 6 weeks. He just had first recurrence end of april this year ( april 27th 2012) he is going to have re-radition for 6 weeks and temador up to two years or longer. He came through the first surgery with out any deficits but this time he has partial paralysis in left arm and leg. Its been almost 14 years. Good luck to all of you and God Bless!

overtherainbow

Grade III: Anaplastic Oligodendroglioma lifespan?
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!

overtherainbow

Grade III: Anaplastic Oligodendroglioma lifespan?
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 Girlfriend

overtherainbow said:

Grade III: Anaplastic Oligodendroglioma lifespan?
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!

Coping with a Partners Diagnosis
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

gdowns

cindysuetoyou said:

me too!
Hi, Carol.

I find this site frustrating too! Right now I am reading through a bunch of posts, trying to see how some people are doing...I haven't seen posts from them for a while. I wish there was a way to search for just their comments so I could see when they posted last, and what they said. That's one of the hard things about this site....people suddenly stop posting and you don't know why. I'm afraid of the reason why some of them stop posting....

David started having seizures in July of 2011. He had two pretty bad ones in his sleep, and after the second one, we took him to the ER and they did an MRI and told us that they saw "disease progression." That's doctor-talk for "more tumor." We were absolutely devastated. It's been a rough road for us ever since.

David took Zofran with the Temodar. He didn't always take it because it made him pretty tired. Overall, David tolerated Temodar pretty well. He hated the "chemo brain" effect the most. It made it hard for him to work--he worked for Apple, selling and troubleshooting Apple products...iphones, iPads, laptops, all their products and apps. He loved it. He had to quit back in July though, once he had the recurrence. Chemo brain from the Temodar also made college hard for him too, but he stuck it out for two years, until the recurrence. The recurrence really changed his life a lot.

Please tell Benjamin hello for me too! And tell him that I hope he catches lots of fish when he goes ice fishing....I love to fish and I think ice fishing sounds so fun!

Thank you for your prayers for David....I will continue to pray for Benjamin also!
Love and blessings,
Cindy
PS can you ask Benjamin to check out this link below? It's a cool YouTube video of fishing under ice. I really liked it!

http://www.youtube.com/watch?v=VIs00QjiJZQ

Hey Cindy,
I was diagnosed
Hey Cindy,

I was diagnosed last year with a grade 3 oligodendroglioma, had a partial resection followed by 12 months of temodar, and I was "lucky" enough to have the 1p19q deletions.

16 months now since my one and only seizure, just had an MRI last week and it looks good (says my neuro-oncologist).

How has David dealt with independence (or lack thereof)? I'm heading back to school in the Fall and I'm extremely worried that something is going to happen in this next year. I'm moving away from home again for the first time in 3 years and it's nerve racking.

SH2012

KMPonder said:

Yes!
That is right. NO signs of cancer! Healing, healing, healing!

We just cannot accept everything doctors tell us, because no two patients are alike. PMJ is right. Treatments are improving and QUALITY lifespans are lengthening. We have to live moment by moment, embracing the days that are great! At the beginning of my husband's diagnosis, I too wanted to know statistics and how long. Doesn't matter, because it does not apply. None of us are guaranteed tomorrow, so carpe diem!

Have hope and faith!

Astrocytoma III what to expect
My wife 49 diagnosed of Astrocytoma III in two locations, left frontal cortex and in thalamus. Doctors have initiated radiation and she has completed 4 weeks. Feels head ache and nausea now. Due for MRI soon and sure will add Temedol. She seems to be holding fair. Feels weak and tired but we are praying and staying positive. Can you give me some advice on the road we are travelling? What should we expect interms of effects and sideeffects of this treatments? I am truly inspired by the folks in this forum and has infused an extra strength to fight.
Thanks

HOIBC

l6blue said:

everyone is different
Seven years ago my sister was diagnosed with grade III anaplastic oligodendroglioma. She had a craniotomy, and they thought they got about half the tumor. This was followed by chemotherapy, and then radiation. 10 months after her diagnosis, they could find no sign of the tumor, and her doctor told her there was "no reason to believe it will ever come back." So far all her checkups have been good. I hope all goes well for your son.

Your stories give me hope.
Hello. After experiencing some mild partial seizures and headaches worsening over time I had a CT scan to rule out stroke and a tumor was found in my right parietal lobe. I feel fortunate that it was operable and surgery was done in May.I was told 99 % resection. I finally got the pathology result from the surgeon last week.He said it was grade 4 glioma. His only other comment was to say "They always come back". From a lab requisiton I deciphered that it was an oligo/astro which although not identical to anaplastic oligodendroglioma they have some features in common as well as similar recomended treatment. I left the surgeon's office devasted thinking my life expectancy would now be measured in months not years (from some statistics he quoted). The stories on this forum give me reason to hope. I have my first oncologist appointment next week and have many questions that I hope will be answered.In the meantime it's one day at a time. I am fortunate also to have come through surgery with no deficits and am in good health generally at 59.I won't bore you with any more details but have to thank you all for posting your inspiring stories. Good luck to all and I will check back to see how everyone is doing. Maybe together we can make the doctors see that we're people not statistics.

Dave27

Struggling Girlfriend said:

Coping with a Partners Diagnosis
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

Coping With a Partner's Diagnosis
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

Dave27 said:

Coping With a Partner's Diagnosis
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.

Thank you Dave27! I needed
Thank you Dave27! I needed to hear that.

Shampals

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.

How is your wife doing now?
Hi Velez,

I was little curious to hear from you the present situation of your wife.
My wife is diagnised with Grade 3 Astrocytoma and is now operatied.Tumor not fully removed but advised for radiation therapy for 6 weeks (5 days a week)..

Would you please narrate your experience until now?.

Best wishes for you too!!Thanks

-Shambu

Shampals

misskittycat68 said:

anaplastic oligodrendroglioma grade 3
my husband was 35 ( 1998) had his first surgery they said removed all of it followed by radiation 6 weeks. He just had first recurrence end of april this year ( april 27th 2012) he is going to have re-radition for 6 weeks and temador up to two years or longer. He came through the first surgery with out any deficits but this time he has partial paralysis in left arm and leg. Its been almost 14 years. Good luck to all of you and God Bless!

Thanks to hear positive hopes from you
Hello,

My wife is presently diognised with anaplastic oligodendroglioma grade 3 tumor after biopsy and partial tumor removal on 4th October 2012.

She is now advised for 6 weeks of radiation therapy.

Having seen your positive stories and hopes,i would like to have a discussions with you to boost my wife confidance on battling with positive attitude.
Your valuable inputs and confidance is important for us.

My Mail ID - yshambulingappa@yahoo.com

Good luck to you and your hubby.God Bless you all!!

Regards,
Shambu

loewing

anaplastic oligrodenglioma
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

loewing said:

anaplastic oligrodenglioma
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

So glad you are doing well
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

cindysuetoyou said:

So glad you are doing well
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

Spoke your name
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

dmercer1 said:

Spoke your name
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."

Thank you
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

Cassie_GreenEyes

My Mom was just diagnosed

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

I survived 8 years...There IS HOPE!

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.