My daughter has a grade II Oligodendroglioma

gallawson · New User Joined: 05 Nov 2007 Posts: 3

My daughter suffered a grade 11 oligodendroglioma 4 years and 3 months ago. The tumor was removed and underwent a year of PCV. The tumor was on left frontal. She takes dilantin to prevent seizures, but is otherwise completely healthy. Repeated MRI's show no recurrence.

A very good paper ion Oligodendroglioma survival by Engelhard, Munt and Stelea from University of Illinois, Chicago, 2003, gives pretty good data on survival rates. The prognostic favorable factors include young age, frontal location, absent neurological deficit, initial presentation with seizure, extensive surgical resection, grade 11 and chromosomal losses at 1p and 19q.

My interpretation of their results suggests that survival to full life expectancy with mostly favorable prognostic factors is not unrealistic and in excess of 20 years is to be expected. Fortunately my daughter has all the favorable prognostic factors. I still pray every night!

I hope this gives some measure of hope to those who face this frightening discovery as we did.
_________________
Grant

brainman

Hi Grant, thank you for posting such a positive message about your daughter.

On November 7, 1992 I was diagnosed with a grade II Astrocytoma so day after tomorrow I will officially be a 15 year survivor. I do not know if I have the gene deletion but PCV worked for me. It made one year of my live very miserable, but I think one year of 15 years and counting was a pretty good return of my investment Smile

Back then, the prognosis was not as good. My doctors said that I only had a 10% chance of living more than 10 years.

I did have a recurrence in 2005. At that time it was diagnosed as a grade III Oligodendroglioma. Unfortunately, my cancer's location is on the left motor strip so I have right sided weakness (arm and hand).

My seizures are under control and we I did have them they were extremely mild. I just cannot talk for 30-60 seconds. I know what I want to say, I just cannot say it.

Best wishes to your daughter.
_________________
Jim
Site Administrator and long-term cancer survivor
1992 Astrocytoma grade 2, left motor strip
2005 Recurrence this time said to be an Oligodendoglioma grade 3, same location.
My Story Part 1: http://cancerforums.net/viewtopic.php?p=7350
My Story Part 2: http://cancerforums.net/viewtopic.php?t=8029
Blog http://jimhawkinsport.blogspot.com/

gallawson · New User Joined: 05 Nov 2007 Posts: 3

Thanks for your comments, brainman. When my daughter was diagnosed, I searched frantically for some encouragement about the future. I found little and did not at that time, find this forum. Please post as much positive news as is possible. I in turn, promise to keep the information coming every now and then.
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Grant

brainman

Hi Grant,

I know I emailed you and suggested that you start your own topic so that people could reply to your questions and needs. However, I went ahead and spit off your posts and my reply to you and started a topic for you. If you would rather have a different title, just edit the subject name in your first post to this topic.

It is good to have something to celebrate now and again Very Happy

. Fifteen years ago right now I was in the ER room of the hospital where I worked getting pumped full of dilantin (ouch... like sandpaper in the veins) and having scans done of my head. My friend and oncologist came in to give me the news and all at once I had no more future... only the present. I was admitted and still had seizures until they started my on dilatin and phenobarbital. I took dilantin until just last year (2006) when I started to have significant memory problems. MRI was clear. So my neurologist changed my medication to Tarciva and I have not had memory problems since... at least not that I can remember Laughing

.

It will be a life-long struggle for your daughter. How old is your daughter, if you do not mind me asking. I was 38 when diagnoses. I did take PCV until the "V" part (Vincristine) started to cause neuropathy in my feet. But I kept taking the PC (Procarbazine and CCNU) for almost a year. It was the worst year of my life. I was hospitalized multiple times due to pneumonia. Take good care of your daughter. Make her take a multivitamin and vitamin C every day.

I do have routine MRIs done at least once a year. It first, it ways much more often than that. Also, the very first time I had an MRI, I almost freaked out. The only thing that kept me in that machine was the knowledge that if I really wanted to, I could get out Smile

. Now, they have to keep me from falling asleep and snoring too loud Laughing

.

Fell free to show your daughter my posts. They might be a source of encouragement to her. In fact, invite her to join the forum (if she is over 13 years old). Wish her the best from a long term survivor.

Sorry for the long post Embarassed

_________________
Jim
Site Administrator and long-term cancer survivor
1992 Astrocytoma grade 2, left motor strip
2005 Recurrence this time said to be an Oligodendoglioma grade 3, same location.
My Story Part 1: http://cancerforums.net/viewtopic.php?p=7350
My Story Part 2: http://cancerforums.net/viewtopic.php?t=8029
Blog http://jimhawkinsport.blogspot.com/

ksplat

Hi Grant
Thankyou for sharing your story about your daughter!
Welcome to this forum too! I have found the Cancerforum to be invaluable to me since my Bro - Mark - was diagnosed in Feb 07. It's like a small community of friends who are ready to offer, support, information, love & understanding.
I will keep your daughter in my thoughts & prayers.
Cheers, Aussie Angie.
_________________
Brother diagnosed with GBMIV Feb 07
Treatment: Radiotherapy, Temodal, Gliadel Wafers, Dexamethasone, Keppra, Dilantin, Clexane
Went to our Heavenly Father after a 19mth battle,, 47 years young.
23 Sep 2008
http://cancerforums.net/viewtopic.php?p=19227

"Without Faith We Have Nothing"

gallawson · New User Joined: 05 Nov 2007 Posts: 3

Many thanks for the reponses I have received. My daughter was 30 when she was diagnosed. She was on PCV for about a year and has MRI's every 6 months. She started every three months and now it is more spread out. She suffered 2 seizures since the chemo, both because of low Dilantin levels. Her meds have now been doubled, and she has been OK. However, I understand that long term Dilantin use is not good. Can anyone advise the best route to follow. She will be meeting with her neurologist in December and I would like to pose the question to him.
_________________
Grant

brainman

There are two bad things about Dilantin: 1. It makes you very tired all the time and 2. It damages the person's gums. Make sure your daughter is aware of the need for daily flossing or she could develop gingivitis easily.

Other than that, she can expect to remain on Dilatin upwards of 10 years. It is a very good seizure control medication with a long history of use so the doctors are very aware of any problems associated with it. Dilantin alone never worked for me... even and well over the therapeutic level. The doctors had to add Phenobarbital before I became seizure free. It is a big pain to have a seizure. The seizures themselves are not really all that bad. It is the fact that if a person has a seizure they cannot legally drive for at least 6 months Confused

That is a big pain in the you-know-what Razz

.
_________________
Jim
Site Administrator and long-term cancer survivor
1992 Astrocytoma grade 2, left motor strip
2005 Recurrence this time said to be an Oligodendoglioma grade 3, same location.
My Story Part 1: http://cancerforums.net/viewtopic.php?p=7350
My Story Part 2: http://cancerforums.net/viewtopic.php?t=8029
Blog http://jimhawkinsport.blogspot.com/

plugh · Regular Joined: 18 Oct 2007 Posts: 18

This may not help but there are other anti-seizure meds as I'm sure you know. I was diagnosed in July by MRI, surgery and biopsy Aug 2 (Grade II Oli - 90% removed). The neuro-oncologists are telling me not to undergo chemo until recurrence. I was given dilantin at first but had an itch reaction to it so was put on 500mg Keppra x2/day. No seizures since a month prior to surgery. The Keppra kept me very tired but ironically I could not sleep at night. Dosage reduced to 500mg x1/day and still no seizures but exercise and sleep are much easier now - I guess the risk of seizures is different for everyone. First MRI (every 3 months now) showed no change. I hope everything works out for your daughter and many thanks for your first positive post! I'll take all the hope I can get.

brainman

Yes, I am on Keppra now. My neurologist started me on that in the summer of 2005 when my seizures came back with a vengeance even though my Dilantin and Phenobarbital levels where good.

That is when I found out that the cancer had recurred. I went two years without an MRI because I did not have insurance and could not afford the MRI. However, in 2003 my yearly MRI was clear but in 2005 there was a 2cm wide by 5 cm long by 2 cm deep Oligodendroglioma grade III growing in the exact spot of the original cancer. Fortunately, by then I did have insurance and my 1 year exclusion of cancer had elapsed.

A little over a year ago, I started experiencing significant memory losses. My neurologist did an MRI which ruled out a recurrence. The EEG showed some post seizure signs so he concluded that those periods of memory loss were due to seizures. So he weaned me off of the Dilantin and started me on Lamictal.

Unfortunately, Lamictal and Keppra are not available in generic form and are much more expensive that Dilantin which is available in a generic form.

So, that is my pharmacological history Smile

. I hope it helps you to know that there are alternatives that your daughter may or may not ever have to face. As I see it, by the time she has a recurrence (if she ever does have a recurrence) they will have newer and better chemotherapy for her to use. PCV was the gold standard 15 years ago. Now it is Temozolomide (Temodar). Ten years from now... who knows?

There is always hope, especially for some one as young as your daughter Smile

.
_________________
Jim
Site Administrator and long-term cancer survivor
1992 Astrocytoma grade 2, left motor strip
2005 Recurrence this time said to be an Oligodendoglioma grade 3, same location.
My Story Part 1: http://cancerforums.net/viewtopic.php?p=7350
My Story Part 2: http://cancerforums.net/viewtopic.php?t=8029
Blog http://jimhawkinsport.blogspot.com/

Trigggl · Regular Joined: 20 Dec 2004 Posts: 25 Location: LR, Ar

*Many thanks for the reponses I have received. My daughter was 30
*when she was diagnosed. She was on PCV for about a year and has
*MRI's every 6 months. She started every three months and now it is
*more spread out. She suffered 2 seizures since the chemo, both
*because of low Dilantin levels. Her meds have now been doubled, and
*she has been OK. However, I understand that long term Dilantin use is
*not good. Can anyone advise the best route to follow. She will be
*meeting with her neurologist in December and I would like to pose the
*question to him.

I was diagnosed when I was 34 (3 years ago) and here is some info from my experience that may relate or be adviseable.

While I was on chemo, I had to take Magaise(sp) to keep my appetite. This advice is probably too late, but it's something to keep in mind. Chemo makes food taste too greasy or too salty to keep down. I couldn't eat anything with grease on it.

I was on dilantin for about two years till my eyes started twitching. I went to a neurologist and he switched me to Lamictal. It doesn't require a blood level check and doesn't fluctuate like dilantin does. It just takes 5 or so weeks to get up to a full dose safely. It's other use is for bi-polar disorder so it helps in other ways as well. It's just an oddball shape that's hard to swallow. It takes so long to get up to a full dose because a severe to life threatening rash can develop if it's started too fast. I was able to start it without complication and am doing well. I definitely feel better than when I was on dilantin.

My MRI's are now being spread out to 6 months, so we may be on a similar stage of our survivorship. To my knowledge, I haven't had any seizures since that fateful day that put me into the hospital for the diagnosis. The neurologist claimed that the eye twitching wasn't seizure activity. This was after an EKG.
_________________
Greg --> 3 years and counting
http://www.geocities.com/trigggl/
http://cancerforums.net/viewtopic.php?t=365&start=0&postdays=0&postorder=asc&highlight=

Derek

Grant,
A quick google search for this University of Chicago aritcle did not yield any results.
Do you have to purchase the article?
I have read enough about the tumour, to know I don't want to know anymore about it, but still do? (Of course I am contradicting myself here, but that's what you often do when you have someone close is affected and you are powerless to do anything about it).
Your daughter is very young to get this tumour (most are over 35), however the scary thing is it is not an old person's disease.
Being under 40 is a very good prognostic factor, my wife was 38 - like Brainman was at his initial diagnosis, and he is still here fighting fit 15 years later.
My wife, too, has all of these good prognostic factors, so you can really only live your life as normal.
Best wishes, Derek

plugh · Regular Joined: 18 Oct 2007 Posts: 18

I think possibly this is the article you are looking for?

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

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