My First Post - Dad Has Oliodendroglioma 3

Hi everyone,

I was so happy to find this forum. My Dad was diagnosed last month with oliodendroglioma 3. He is in his early 60s and was showing no signs until just a few days before. He had a resection (basically as complete as can be with this type) and is now doing radiation and chemo. He seems just like his old self. His doctors seem very encouraging, but I can't stop reading the grim prognosis stats for this type of cancer. I guess I am looking for words of hope and encouragement from others. He is my hero and I just can't imagine him not being around. I appreciate anyone's experience with this type of cancer and advice on what to expect.

Thanks,
Jayne

Hi Jayne,

My husband has Anaplastic Oligodendroglioma Grade 3 and he is doing very well after 15 months of treatments.  He works full time and does everything he always has.  The Oligodendroglioma type of brain tumors if they have the right genetic markers are more favorable for treatment.  It is still no walk in the park as anything can change but we are fortunate to have somewhat better stats on this than a GBM for instance.  Everyone out there with a brain tumor is different so keep the faith there are many out there that are doing well regardless of what type they have.  We have a friend that is now over 4 years out from having the same thing and is doing well at this time.  My husband's tumor was located in the left frontal lobe and our friends was in the right frontal lobe sometimes location makes a difference also.  Keep the faith my step mother's boss was told 22 years ago he would not survive his brain tumor.  Guess what it has been 22 years and he is fine, thanks to great doctors at MA General and probably the big guy upstairs.  Best wishes to you.

Thank you so much for your reply. It was very encouraging. I am glad to hear your husband is doing so well. My Dad unfortunately does not have the favorable genetic deletion, but I am still trying to keep my spirits up as I have heard that oligos are better than other tumor types in terms of responsiveness to treatment, even without the deletion. Thank you so much for responding to me. It's a little overwhelming and so comforting to talk to others who have been through this. I still am in shock to be honest. Jayne

 

On 7/25/2008 jayne2 wrote:

Hi everyone,

I was so happy to find this forum. My Dad was diagnosed last month with oliodendroglioma 3. He is in his early 60s and was showing no signs until just a few days before. He had a resection (basically as complete as can be with this type) and is now doing radiation and chemo. He seems just like his old self. His doctors seem very encouraging, but I can't stop reading the grim prognosis stats for this type of cancer. I guess I am looking for words of hope and encouragement from others. He is my hero and I just can't imagine him not being around. I appreciate anyone's experience with this type of cancer and advice on what to expect.

Thanks,
Jayne

 

Hello there!  

Just a quick note, my dad to is my best friend, and I can't imagine life without him!!   He was diagnosed with grade IV GBM, and so far has had the surgery to remove the tumor(or at least what could be seen), has just finished his radiation and first round of temador along with.  We have a positive attitude, and also look for alternative ways such as supplements, vitamins, food, things of that sort to kind of make his odds a bit better.  Everyone who has brain tumors are so different, how they respond to the treatment and what not.  My advice to you would be stay positive, keep him positive, understand that if he is testy, aggravated, moody, arguementative, or uncharactaristicly not himself, it's not his fault.  The meds along with the fact it is a brain tumor limits his control over alot of things he would normally be able to control.  Oh, the correct spelling is OLIDOGDENGLIOMA-it's a confusingly long name.     Best of luck to you and your family-and God bless you!!!

The name is actually spelled:

oligodendroglioma

My husband was dx oligodendroglioma (stage 3) 5/6/08, surgery 5/7/08, finished 6 weeks of radiation with combination half strength Temodar (oral chemo). He had a 4 week break and now is on Temodar 5 days on/ 23 days off. He suffered a grand mal seizure in that 4 week break, he was on a seizure med Keppra. The doctors feel it was caused by the radiation induced edema on his brain. He was taken off steroids to early and abrubtly. So far the MRIs have showed no regrowth. The MRIs will be every two months for now. My husbands tumor had codeletions, which predict that the tumor will be more suceptible to chemo/rad. But when we got a second opinion another patholgy test called a MGMT was done. The doctors explained that it was a test for a certain enyzme that coats a cancer cell to protect it. You may want to have your dad's tumor tissue tested for MGMT. The doctors did state however it usually correlates with FISH or deletion 1p 19q testing. I urge you to seek second opinions on everything. You sound like you guys are on the right track for treatment. Glad the resection was very successful. That was a big hurdle. I wish you all the best, keep your chin up.  I hope my 3 year old son and myself get another year with my husband for everytime I heard everyone's brain cancer is different. It's hard not having answers and doctors who have no problem telling you those grim statistics. I have to say survivors give me hope. I hope I can help someone as much as I have gotten help from them. Some of the greatest people has I'm sure your dad is!  Make sure you check out American Brain Tumor Association for resources. I would be happy to chat or answer any qustions,share notes. You and your family are in my prayers. Go Dad!!!!

Thank you everyone for your replies. They helped so much. Dad is still doing great and has finished his rad/chemo. He will be starting the 5/23 temador at the end of September as well as getting results from the first post-treatment MRI so I will keep you posted. My best thoughts are will all of you dealing with this. Warmly, Jayne