What's your Oligodendroglioma story?

200 Posts | Page(s): Prev 1 2 3 4 5 ...1920 Next 

RE: What's your Oligodendroglioma story?

by TrustinginGod on Fri Apr 08, 2011 05:56 AM

Quote | Reply

I hope the numbers are wrong too. My husband had grade 3 anaplastic oligoden. He is now taking temador 5d. Doc still told us 3-5 years although the surgeon said he removed the whole thing. Said it could come back and if it does, will prob be grade 4. This was 7/16/10 for the surgery. I pray too that they are wrong with the expectancy. We live in Holland Ohio.

RE: What's your Oligodendroglioma story?

by TrustinginGod on Fri Apr 08, 2011 05:56 AM

Quote | Reply

I hope the numbers are wrong too. My husband had grade 3 anaplastic oligoden. He is now taking temador 5d. Doc still told us 3-5 years although the surgeon said he removed the whole thing. Said it could come back and if it does, will prob be grade 4. This was 7/16/10 for the surgery. I pray too that they are wrong with the expectancy. We live in Holland Ohio.

RE: What's your Oligodendroglioma story?

by niallsmum on Fri Apr 08, 2011 06:17 PM

Quote | Reply

My son was diagnosed with Grade 3 oglio astrocytoma in Dec'08.  He was told that the average life span for this is 3 - 5 years.  Right now, he is doing well, other than he had a seizure about a month ago, and was in hospital for four days.  His anti-seizure medication was upped from 1000  per day to 1250.   I'd also love to hear from other survivors, as I don't know what (or when?) changes to expect.   Maybe it's right that this changes to GBM, and that's why it's not often that I read of survivors of grade 3.  I would love to hear other people's stories. It's all so worrying, and yet, maybe instead of worrying about 'when' or 'what if', we should be just enjoying the present.  The statistics are very scary.  As Damon always said:    'HOPE'

RE: What's your Oligodendroglioma story?

by TrustinginGod on Sat Apr 09, 2011 03:58 AM

Quote | Reply

I agree. Not knowing is very frightening but we can't let this thing control us. We have to live life for the moment and enjoy the good times. Life isn't promised to any of us.....My husband never had seizures. His was found from him having headaches and dizziness.

RE: What's your Oligodendroglioma story?

by clclarkrn on Mon Apr 11, 2011 08:10 AM

Quote | Reply

I wish I could say my husband has had the luck that many of you have replied to the post about.  He was diagnosed with a grade II oligo in 2006.  The doctors were able to remove about 95% of the tumor and his neuro-oncologist said that most likely he would die with this tumor but not from it.  My husband was given many options for treatment, but because of his age (being 32 at the time with 2 small children) he chose to treat aggressively with 6 weeks radiation and 24 months of Temodar.  About 20-22 months into treatment he started showing progression.  In 2008 he began IV chemo which did not work.  In April 2009 he had another tumor resection which revealed that the tumor had upgraded to an Anaplastic Oligoastrocytoma.  He began another year of chemotherapy which again cleaned up the tumor.  Three months off chemo he began having recurrence.  Due to the location of the tumor, being low in the cerebellum, he is not a candidate for surgery to see if the tumor has upgraded again.

I say all that to say that oligo grade II are the less aggressive tumors to have but there is always a chance that they can change and upgrade.  My prayers are that your wife does well and will be cancer free!

RE: What's your Oligodendroglioma story?

by SuzyG on Wed Apr 13, 2011 06:57 PM

Quote | Reply

Well I was diagnosed with an Olio grade 2 in May 2005. Found out I had it from a seizure ! Surgery 2 days later (gross total resection )  no chemo or rad at that time. Wait and see after 6 years of MRI's every 3 months . Fast forward 6 yrs it has reoccured... Did about 8 rounds of Temodar ( very low doses ) because my blood counts could not handle the higher doses. Well the low doses of Temodar held the tumor off for awhile, then the last MRI showed that it was active again and had moved to the other side now, so my Oncologist took me off of Temodar and I had an appt. with a radiologist who wants me to do radiation for 5 weeks everyday... so I am going on 6+ years... cannot decide if I want to do radiation or not ( I guess it is a one time thing )  so thats my story......

RE: What's your Oligodendroglioma story?

by TrustinginGod on Thu Apr 14, 2011 03:35 AM

Quote | Reply

SuzyG,

My husband had his radiation 1 month after his surgery, they also said his was a gross total resection. He has never had a seizure so is not taking any meds for that. Cleveland Clinic said it is now possible to have a second round of radiation, has anyone else been told this? He is suppose to start his 7th round of 5day chemo this week but his oncologist wants the tumor board to review his mri this time before he starts. Said he sees a little something but is 95% sure it is nothing to worry about. Thinks it just may be from his radiation and chemo he had in Oct. It seems almost everyone that has theses types of tumors have had seizures. With my husband's being a grade 3, it makes me wonder if he could have had one and we not know. Everyone on this site seems so knowledgeable. I have so much to learn....

RE: What's your Oligodendroglioma story?

by Thanes16 on Wed Jan 25, 2012 03:32 AM

Quote | Reply

Hello everyone,

I am glad I found this website and have been able to read your postings. I, too, have had a grade 2 oligodendroglioma removed. Thankfully my neurosurgeon was able to remove the entire tumor 10 years ago. I was 21. He told me the average life expectancy is only 11 years, but he strongly stressed I should not go by the numbers, because everyone is different. I also made my own decision to not look up information on the internet. Whoops, made that mistake in the last week or so. I haven't had an MRI in 4 years, because I truly believed I had beaten oligodendroglioma. However, after reading the material on the internet I am now getting the idea this type of brain tumor is incurable. Is this true? Is it more of a question of how long you can survive? I apologize for the depressing questions. I would just like to have a little clarification. I do wish all of you the best.

RE: What's your Oligodendroglioma story?

by vwxyz on Wed Jan 25, 2012 06:21 AM

Quote | Reply

We have been told with anaplastic oligodendroglioma, grade 3, 80% dx, radiation, temodar, the time before it comes back is about 3-5 years with both deletions. (probably less with my son  because he has 1 deletion and a past "childhood" history with 8 PLUS hours of radiation from a THEN experimental bone marrow transplant.)

There is not a lot of research on this oligodendroglioma c cell because it is the minority.  The Drs. start treating it as they would a GBM. A Dr. in Canada did a strong study on this c cell, thus the success of what the docs call "the standard treatment."  After this fails "there is not a heck of a lot more that can be done for it," we were told. My sons doc is hoping temodar the second time around when it comes back will work as well as the first time. The first time he had the 6 weeks radiation with low 115mg temodar. After that they put him on 230mg temodar 5/28 for one year.

They had to lower his Temodardose because of his counts and stopped 5/28 after 12 months. So far all MRIs have been stable.  He just had another one today and we will find out the results this Thursday January 26, 2012.  I pray things will remain stable.  He looks good.  Excellent facial coloring, but has other medical issues that need to be monitered as well. His rapid heart beat is one, off the charts high cholesterol is another. He has moments when his memory is not up to par but I atribute it to he is tired. (the anti-seizure med does this to him). It is exceptionally important he eats balenced meals every day or his heartbeat will rise higher believe it or not. And we all know it is important to take the meds.  We have been told most of his life on this earth "there is no cure."  With his childhood ALL Leukemia, we were told no cure! With the (then) experimental bone marrow transplant, we had a chance 98% parents of children at the Jimmy Fund Building and the new Dana Farber building refused. We were blessed. It worked, but it took its toll on his body as he aged. When I speak of all this, it comes down on me like a ton of bricks. To be told how much time he has on this earth (he has a twin brother with thankfully no medical problems) and looking at his healthy twin brother, he asks why did this happen? Why was he born to have to go through this and then die? Life is too short as it is. The years in between he had a wonderful life with all his friends, but then they all married or left the state of Massachusetts. He grew hair, dated a lot of women from the large church he attended, put himself through college, graduated with his diploma with the American dream for the future.

 I am glad the docs found the cancer when they did or he would have been dead in 2 days.

 I am angry because they should have found it many years before but neglected to tell us of their findings on an MRI. We had 3 opinions and none of them told us of the small white mass in the cerebellum that they wrote about in their personal Doctor reports.  Nothing can change the fact that my sons life would have been better if it was addressed and treated years before when they first found it.  But even then the docs would have put a time limit on his life expectency.  To have the tumor found in the beginning, small, complete, dx, deletions, youth on your side, you can probably live much longer than reports predict. 

Wishing you all a very long healthy stable life, Jan

RE: What's your Oligodendroglioma story?

by Thanes16 on Wed Jan 25, 2012 12:39 PM

Quote | Reply

I hope the results for your son's MRI go well on the 26th. He's definitely been through a lot, but he is proving many wrong by enduring and surviving the things he has had to deal w/. You have a strong son. What's ironic is I also have an identical twin brother. Thankfully nothing like this has happened to him. He is currently a Captain in the Marine Corp, married and has 3 young sons.

I am staying upbeat as possible, but I will admit the conflicting reports on the internet momentarily shook up. I have a strong belief in those who want to live and actually do their best to move on in life will survive for an indefinite period of time. After having the tumor removed 10 years ago, I continued and finished my cross country and track and field career at Mississippi State University. The confidence/belief I had in my "victory" over the tumor truly helped me earn my degree and eventually get married and have two beautiful children. 

I appreciate the advice you have given, and I truly hope things go well for your son and your entire family on the 26th. 

200 Posts | Page(s): Prev 1 2 3 4 5 ...1920 Next 
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.