Oligodendroglioma Grade 2 (1p19q-codeletion) treatment?

7 Posts | Page(s): 1 

Oligodendroglioma Grade 2 (1p19q-codeletion) treatment?

by Amyreda on Tue May 10, 2016 05:42 AM

Quote | Reply
Hi, My husband Tim (32 yr old) was diagnosed with an Oligodendroglioma Grade 2 about a month ago, after having a biopsy on March 28. Focal seizures (left hand and then left arm and face going numb) led us to getting an MRI scan and then a biopsy. We have gotten several opinions on what we should do for treatment and we are still not feeling certain of the "right plan". The biopsy surgeon told us to not do surgery because tumor is very close to motor strip and could leave tim paralyzed in left arm or face. He is a professional surfer and surf teacher; and I think that was taken into account. Another surgeon said they can do the surgery but there is a small risk. Tim is thinking he will put off surgery for now. With or without surgery, every doctor we have spoken to has said to do radiation and chemotherapy (one oncologist suggested Temodar). Though this seems somewhat logical, we are also very scared and confused. Why are we treating a BENIGN tumor with chemo and radiation? Are there some people that don't really "treat" (surgery/chemo/radiation) Oligodendroglioma grade 2s, and they wait and watch it?? What is the chance it will turn into a grade 3? What is the chance it won't grow or turn into cancer at all?? My husband is afraid that the chemo and radiation might cause the tumor to grow back as a higher grade cancer or the chemo might lead him to develop a different cancer like leukemia. Has anyone else shared these fears and concerns??? How did you make such huge decisions when deciding on your treatment plan? We don't know what to do, and anyone's advice who has gone through this experience would be SO appreciated! Thank you so much!

RE: Oligodendroglioma Grade 2 (1p19q-codeletion) treatment?

by rudygregory on Mon May 23, 2016 10:48 PM

Quote | Reply

My wife just completed olio surgery at Duke.  The tumor was discovered 11 years ago,  during this time she had no growth.  The only sign she had the tumor was a seizure once a month .  She had 3 seizures pretty close together which prompted the doctors to push for surgery.   I personally didnt want the surgery t happen. I was overuled by everyone.  Im just a smarter than average redneck.       My personal feeling on this is to go with the oral timador*.  This was given to my wife early.  I feel that it held back the tumor.  No sickness accompanied this therapy.      It is my opinion that the tumor should be biopsied and when and if ever it goes anoplastic* then get aggressive .  The only way they can determine this is by biopsy. Biopsy is alot less intrusive than surgery. We find out Wed and honestly if not anoplastic * Im gonna be miffed. Best wishes.   She has codeletion.  

RE: Oligodendroglioma Grade 2 (1p19q-codeletion) treatment?

by rudygregory on Mon May 23, 2016 10:51 PM

Quote | Reply

btw check out 60 minutes "breakthrough status".  the cure is coming.  Problem with this tumor is its so damn rare nobody studies it. 

RE: Oligodendroglioma Grade 2 (1p19q-codeletion) treatment?

by devonnajm on Sun May 29, 2016 09:57 PM

Quote | Reply

My husband, David, was also diagnosed back in June 2005 with a grade II oligodendroglioma w/1p19q codeletion after a massive seizure.  When we were first shown his egg size tumor, I was frightened out of my mind because we just lost a very dear friend, age of 43, with a grade IV glioblastoma.  At that time, we did not realize there were many different types of brain tumors and treatments.  We just assumed it was a death sentence.  It took 4 neurosurgeons opinions before they could decide what type of tumor my husband had.  From San Diego to San Franscisco, all had a differing opinion.  After a biopsy, the first neuorsurgeon felt it was an astrocytoma, which in his opinion, made my husband's tumor inoperable.  So he told David to go home and get his affairs in order and enjoy what little time he had left.  The second neurosurgeon also agreed it was inoperable, but that it was a oligodendroglioma treatable with radiation and chemo.  Since we had two diagnoses and two different opinions, I pressed on for a third.  The third neurosurgeon didn't actually give us a diagnosis, but referred us to a fourth neurosurgeon who agreed that it was indeed a grade II oligo and definitely operable.  So we chose to have the surgery.  Thankfully, the surgeon was able to remove the whole tumor with clean margins.  He did not have to have chemo or radiation at that time and went on for five more years before another occurance.  The odd thing about oligo's is that they have a history of coming back. So my advice is educate yourself and get as many opinions as your medical insurance will allow. 

I know first hand this is not an easy road.  Prayer and persistance are your friend.  God bless!

RE: Oligodendroglioma Grade 2 (1p19q-codeletion) treatment?

by Nleslie on Wed Jun 07, 2017 09:06 PM

Quote | Reply

My husband was diagnosed with an Oligodendroglioma in the Right frontal lobe egg/golf ball sized.  A seizure led to the discovery. This was Sept. 2005.  We had a biopsy done.  Came back as Oligo Grade II and he also had the dna deletions.  We elected to have a sugery to debulk (recommended by neuro surgeon and also MD Anderson our 2nd opinion).  He was having seizures that were not being controlled by meds'. So in November of 2005 he had debulking surgery and then in January of 2006 did 12 rounds of Temodar (NO Radiation).  The Temodar shrunk the remaining Tumor slighting during those rounds.  But even the year after as he had followups it continued to shrink/decline.  around 5 years it started slowly growing back again towards the motor track and we elected at 8 years that it was time to get it out.  Surgery again in August of 2013.  They were able to remove all visible Tumor.  He elected to wait and watch after that surgery and here we are today June 2017 (4 years later) and there's 3 spots in the same tumor cavity area that have been slowly creaping back.  2 are about .5 cm and the third is 1.5 cm.  He also had a new small spot show up on the opposite side in the left frontal lobe which is NEW.  Currently we are scheduled to have a functioning MRI late October and do surgery again over the holidays to remove the 3 spots that have grown back.  We're going to watch the 4th new one that presented itself for the first time.   My husband has been working and functioning seizure free since the August 2013 surgery.  Prior to that the residual tumor was still doing something that he had to take Keppra to keep from having seizures.  He has had a wonderful last 4 years just taking a multi vitamin and living life.   We still have not done radiation and he may do temodar after this surgery depending upon pathology reports.  Other Note i wanted to comment on was this is not a Benign Tumor.  So i don't know who told you that.  It is a slow growing one and is called a glioma (all gliomas are malignant just at different levels) and will come back at same state or increase in grade as the years go by.  My husband is going on 12 years since occurance this September and we've continued to live a full life with quality time and memories and making lasting impacts on our family, friends and community.  Stay Positive!  Blessings, NLL

RE: Oligodendroglioma Grade 2 (1p19q-codeletion) treatment?

by MeeChee1975 on Tue Jun 13, 2017 03:02 AM

Quote | Reply

On May 10, 2016 5:42 AM Amyreda wrote:

Hi, My husband Tim (32 yr old) was diagnosed with an Oligodendroglioma Grade 2 about a month ago, after having a biopsy on March 28. Focal seizures (left hand and then left arm and face going numb) led us to getting an MRI scan and then a biopsy. We have gotten several opinions on what we should do for treatment and we are still not feeling certain of the "right plan". The biopsy surgeon told us to not do surgery because tumor is very close to motor strip and could leave tim paralyzed in left arm or face. He is a professional surfer and surf teacher; and I think that was taken into account. Another surgeon said they can do the surgery but there is a small risk. Tim is thinking he will put off surgery for now. With or without surgery, every doctor we have spoken to has said to do radiation and chemotherapy (one oncologist suggested Temodar). Though this seems somewhat logical, we are also very scared and confused. Why are we treating a BENIGN tumor with chemo and radiation? Are there some people that don't really "treat" (surgery/chemo/radiation) Oligodendroglioma grade 2s, and they wait and watch it?? What is the chance it will turn into a grade 3? What is the chance it won't grow or turn into cancer at all?? My husband is afraid that the chemo and radiation might cause the tumor to grow back as a higher grade cancer or the chemo might lead him to develop a different cancer like leukemia. Has anyone else shared these fears and concerns??? How did you make such huge decisions when deciding on your treatment plan? We don't know what to do, and anyone's advice who has gone through this experience would be SO appreciated! Thank you so much!

Howdy

Please do not be scared.

My husband was diagnosed with Stage 3 Anaplastic Oligodendroglioma and has no symptoms or seizures. He is 41 years old. 'Anaplastic' means cancerous but as explained to us by award winning experts...you can have a non anaplastic tumor like this with positive co deletions.

My husband had his first surgery to remove an eggsized portion for biopsy on 12th May. He was back to work on 18th May. 

He decided to have a resection which we just got home from. Surgery was 9th June and 10th June he was walking talking and wanting to go home. He handled very well and will embark upon radiation and TMZ. 

23% of the AO tumor remains but he has no seizures only a bit of visual impairment. I have even noticed that after this 2nd surgery he is more quick witted and alert. His tumor was critically located on his brain stem and its finger like structures well into his optical, speech and mobility areas. It was so scary that he was airlifted from the first hospital who found the tumor. 

There are amazing scientific advancements out there just do your research and check the track record of your surgeons etc. My husband's medical care is being handled by University of Colorado Hospital. 

Stay strong and know you are not alone.

RE: Oligodendroglioma Grade 2 (1p19q-codeletion) treatment?

by drdtc on Fri Jun 30, 2017 12:32 PM

Quote | Reply
Some good research published last year: http://www.nejm.org/doi/pdf/10.1056/NEJMoa1500925
7 Posts | Page(s): 1 
Subscribe to this message board discussion

Latest Messages

View More

We care about your feedback. Let us know how we can improve your CancerCompass experience.