Anaplastic oligodendroglioma grade 3

Just trying to connect with anyone who may have the same diagnosis as I do and wondering how you are doing? When were you diagnosed? What kind of treatments did you have? What were any setbacks that you may have had? Did you continue to work? Etc., etc.

Report post

29 replies. Join the discussion

Hi Cathycatch,
No AO3 here. My son is dealing, very successfully, with an anaplastic astrocytoma Grade 3. If you get short on replies to your specific diagnosis, I'll be happy to share what we have done and how it has worked.

To give you a hint as to how incredibly successful my son has handled his AA3, he is on a maintenance chemo round this holiday weekend (he started Wednesday) and, because everyone else had some excuse or other and couldn't/wouldn't work, he is working 12 hour shifts every day this weekend - even while on chemo!

All the best,
Jana

Report post

Hi Jana,

I also have AA3. Do you mind if we can email each other offline? Thank you so much! It would help to know and share with someone who is experiencing what I am.

Sidney

Report post

My husband was diagnosed on 5-18 -12. We had the diagnosis at Barnes and are going to Duke for a second opinion.

Report post

Hi Cathy
I was dx in November 2010 AO3. My husband found me having a seizure in my sleep. I had a right frontal lobe oligodengroglioma, with the chromosone deletions. It was 90% resected. I had temodar for 6 months. I am currently stable and I have mri's every 3 months. I was not able to work after craniotomy or chemo. I went back to work two days a week this school year. I work as an occupational therapist in a local school setting. I also have 4 kids 15, 15, 10 , and 6. Work helped me stay on schedule and honestly to get out of bed some mornings. I have struggled with fatigue, depression, and short term memory. I am glad you are in a good place. I do have more good days than bad at this point. But that changes. I do a lot of studying and searching about this disease. I am lucky to have a local support group that meets monthly. I am also on face book and joined a closed group called brain cancer family. I have met a few of us there. I am 46, and think my hormones affect my moods at times as well as the reality of the situation we are dealing with.
Diane

Report post

Hi Cathy,

I wish you all the best.

I too had an Anaplastic oligodendroglioma grade 3 tumor diagnosed in Sept 2009 after having had a severe headache for a number of weeks. I had the tumor surgically removed shortly after the diagnosis, then had a post-surgery recovery period of a month, then radiation treatment for six weeks, followed by 6 months of a combination chemotherapy of oral temodar and procarbozine. I did not work during the month post surgery recovery or the radiation treatment as I had to have this away from the small town in which we live, but returned to full time work soon after the radiation treatment was completed while I went through the chemotherapy. I was tired during this time but it was quite possible to manage working while going through the chemotherapy. I have periodic post treatment MRI scans and all seems well so far in that I have had no recurrence of the tumor.

I believe that moderate exercise and a healthy diet during and following treatment may aid recovery. The book Anticancer: A New Way of Life by David Servan-Schreiber gives good tips regarding exercise and diet approaches as adjuncts to treatments. As I had to be in another town for the radiation treatment and so did not have my usual family and work commitments, I was able to walk for three hours every day during the radiation treatment ( I know that this of course is not possible for all with this type of tumor, either because of physical reasons or because of other commitments). I now try to exercise at least an hour each day. I also follow a low glycemic diet in an attempt to control inflammation, which is thought to play a role in the development of tumors, and take supplements such as curcumin (an ingredient of curry), Omega 3, and vitamin D3, all of which also are thought to have anti-inflammatory properties.

Best wishes, Nicola

Report post

Hi All,
Just wanted to make sure you saw the news report about the conclusions of a long term study on AO.... please see the article at

http://www.medpagetoday.com/HematologyOncology/BrainCancer/33049

The bottomline of the research is that AO patients in the 1p/19q co-deletion group were especially responsive to chemotherapy.

All the best,
Jana

Report post

I am 5 weeks post surgery for 95% removal of the Oligodenroglioma grade 2 and 5% grade 3 also in the right temporal lobe. Since that last 5% was near the brain stem the surgeon "did not want to play there". I start Radation and Temodar on the 13th for about 6 weeks from what I gather - On the books for 28 treatments. I will let you know how it goes. I also have the chromosome deletions.
Family and friends have been the best support .

I am also checking on any medical studies in my area so that others do not have to go through what we have. It does make us stronger.

I have been on leave from work since 2/13 after massive seizure in middle of night. my return to work date is currently 7/18 but I will try to push that up as long as can be released by all the MD's. I miss working out 2-3 days per week. My husband is concerned so I can not go out and walk by myself.

attitue is important and it what it is. Lee

Report post

Hi Nicola,
Since you are a curcumin users, thought you might like to hear about the latest research just reported today...

"...researchers analyzed the effects of a curcumin supplemented diet in fruit flies. Two doses of the compound was compared to control using a total of three groups of flies. Low dose was .5 gram/kg and high dose was 1 gram/kg.

It was found that the low dose and high dose “increased mean lifespan by 6.2 % and 25.8 % in females, and by 15.5 % and 12.6 % in males, respectively.” However no dose of curcumin extended the maximum lifespan in either males or females.

Furthermore the researchers sought to determine if chronic curcumin supplementation affected oxidation status of the animals. This was confirmed as levels of MDA (a marker of lipid oxidation) were lower in the curcumin-fed flies. Also super-oxdide dismutase activity was greater in the curcumin-fed flies." end of report

I also know of a number of people with brain cancer who use curcumin and all seem to report good results. One woman has been taking it for 5.5 years and attributes her non-recurrence to the curcumin. Sounds like you are doing the right thing.

All the best,
Jana

Report post

Hi, My husband has the same grade and type of tumor. What kind of treatments are ou getting and how is it going, we are just in the beginning. His tumor is in the left parietal area. I have not seen any comments on tumors in this area.

Report post

Hi KLQ,

Firstly, I am sorry you and your husband are having to do through this very scary time. This is not a pleasant experience. I will add you and your husband to my prayers.

The treatments my son got/is getting are the usual for AA3: first surgery followed by radiation and low dose Temodar daily (except weekends) for 6.5 weeks, rest for one month and then start on high dose 'maintenance' Temodar taken 5 days out of every 28 days. It is going absolutely excellently. My son has no evidence of cancer on his MRIs, healthy tissue is growing in the cavity, his blood work is actually in the normal range, he has no nausea, no fatigue and no constipation from the chemo, and he went back to work 4 days after his radiation/chemo blitz ended. The only event of any note was that in week 4 of the radiation/chemo blitz, he had a seizure in his sleep, but his anti-seizure meds were ridiculously low at the time and of course his brain was being zapped daily. Once his meds were adjusted, he had no more episodes.

I must add that from the very beginning, we have had him on a special diet/supplementation/exercise program to give his body the maximum opportunity to work with the treatments. This program was put together based on recommendations from long term brain cancer survivors, clinical nutritionists, non-attending neuro doctors and anyone else we could get sound data from. We then took these ideas to his oncologist and had them blessed. In certain cases, his oncologist helped set the dosages for the supplements. If you want a copy of that program (no cost, no strings attached), just e-mail me at jana.piscioneri@verizon.net. It is on an Excel spreadsheet, so you'll need that software to be able to read the file.

His results of this combined attack on his cancer have been outstanding. Right at the end of his radiation/chemo blitz, he jogged 3.5 miles to my house. About the time he was in his 3rd round of heavy chemo, he was jogging 10 miles around a lake. Over the Memorial Day weekend, his employer called for volunteers to work 12 hour shifts. He volunteered and worked Friday thru Monday 12 hours each day....while on his maintenance chemo. Blood work that Monday was just fine, as usual.

Bottomline is that we (he especially) never, ever once gave in. This is a lousy and dangerous disease, but with all the skills and artillery that doctors have today (which is improving nearly daily with all the research that is going on), plus all the things we can do to complement their efforts, really promising results are possible. I know of two other people with AA3 who have attacked their brain cancer with the same gusto as my son and they are having the same types of results. Just do not give in to this Beast.

All the best to you and your husband,
Jana

Report post

I have a Oligodendroglioma in 1998, on the left frontal side. Went to Dallas, Tx. I had to go thru alot of rehab. My speech, right arm, & talking. Praise God I'm still here. In 2008 I had a recurrent tumor. Did a Stereotactic Surgery in Dallas, Tx. It was a
Anaplasia Oligodendroglioma grade 3. Had chemo for 6 weeks for 6 cycles. I go every 6 months for an MRI. I have on tomorrow.
I know it will ok. I'm thankful for my time I have with my husband & 2 children & 2 grandsons.
Love & prayers, AnnJoy

Report post

Hi AnnJoy,
I gather when you say, Dallas, you mean the big Baylor cancer center downtown Dallas. That is one of the centers of excellence for brain cancer. God put you on really good pasture when He put you there.
I'm praying all went well with your MRI.
Jana

Report post

Do you experience "late side effects"? Difficult handling daily task, uncontrolled rage?
My 39 year old son had this same tumor removed in 2003... Same follow up as you.
We need psycic help....any suggestions?

Report post

Diggie, are you talking about AO3 tumor removed? Seems as if there are a couple of discussions on here about different types of tumors. I've just been dealing with this since Dec. 2010, so not having a lot of side effects so far except nausea and fatigue during chemo treatments, but otherwise feeling ok. Could be that your son is dealing with some depression issues or post traumatic stress maybe from dealing with this devastating disease at such a young age. Has he tried to seek any counseling? I think it would be worth pursuing if he is willing.

Good luck.
Cathy

Report post

Yes, AO3. He was rushed to ER near death. He was having severe head aches. At ER they removed the large tumor. His eye sight has been affected: difficult with colors, can not reconize faces, sight impaired. We are having difficulties finding the psyche help he needs.

Report post

Diggie, I was able to get case management through my health insurance. I don't know if your son has that option or not. But I can tell you that as a patient things can be overwhelming and sometimes having an advocate (like a parent) do the research for you can help tremendously. Maybe you can inquire for him about case management. They are very good for helping you find resources that can help him. Sometimes the hospital itself or the physician's office where he goes can give you good information also. I hope that helps some. I'm sorry for all the difficulties you are encountering. Is he on disability or anything like that?

Report post

On disability. Thanks for your input.

Report post

I was diagnosed after surgert 5/1/12, My full journey to date is under my profile page link.

Report post

Hi Jana,

I had my surgery at Parkland Hospital ( Dallas) with Dr Bruce Mickey. He's with UT Southwestern Medical Center.
I had my MRI July 9. I've got back the DVD & Imaging Report on Wed. I looks good to me. Just waiting for the Oncologist
to said how it went.

You all have a nice day. Love & prayers. Joyce

Report post

My leave was extended to 7/27, and return to work is 7/30.

Report post

This discussion is closed to replies. We close all discussions after 90 days.

If there's something you'd like to discuss, click below to start a new discussion.

Things you can do

Support ABTA

Together with your help, the American Brain Tumor Association will fund more research and reach more people, with the shared goal of improving, extending and ultimately saving lives. With your gift, those coping with a brain tumor diagnosis will know -- more than ever -- that they are not alone.

Donate to the American Brain Tumor Association

Discussion topics

More from ABTA

Community leaders