Grade 2 oligodendroglioma with deletions-treat or wait?

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Grade 2 oligodendroglioma with deletions-treat or wait?

by Renaelb on Wed Apr 25, 2018 01:02 AM

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I am about a month out from having surgery. They were able to remove 90%. Because of the deletions I had assumed we would start pcv chemo, but my neuro wants to wait until we see growth on the mri. I have consults with the radiation oncologist and medical oncologists in the next week or two. Curious if anyone can offer their two cents of things to think about or questions to ask,etc? Thank you!

RE: Grade 2 oligodendroglioma with deletions-treat or wait?

by Sleepykit on Wed Apr 25, 2018 11:31 AM

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Hi Reaelb, 

I am sorry you had to join this group, but i guess you know by now that its a good one to live with for years/ decades. 

  As to your question to start PCV or watch and wait; it depends really if you are categorized as high or low risk ( age and gross total resection play a role). 

The following is the Buckner protocol, its quite lengthy but worth the read if you want to want to have an idea of the decision making tree and what may await you

http://www.nejm.org/doi/suppl/10.1056/NEJMoa1500925/suppl_fi

It is the basis for the follow up study published in 2016 with the promising results; 

http://www.nejm.org/doi/full/10.1056/NEJMoa1500925

I was diagnosed over 9 yrs ago with a huge space occupying  OA 2, surgery with partial resection. I had 12 rounds of temodar that was the standard at the time. The remaining tumor was over 2 cm large and showed signs of growth 3 times over the yrs, but i refrained from further treatment as iwas doing really well and wanted to get along with my life. I have not regretted delaying radiation as i was in my early 40's at time of diagnosis and overprotective in regards to my mental capacities ;-)

Last year the tumor was reclassified as an Oligo 2, with all the deletions. Due to the promising above study, I had radiation and am currently on PC ( no Vincristine due to a polyneuropathy from my 12 rounds of Temodar after initial diagnosis).

Do you see a neuro-oncologist? If you have any further questions, fire away. 

All the best for the upcoming appointments and keep us informed. 

Kit

RE: Grade 2 oligodendroglioma with deletions-treat or wait?

by Renaelb on Wed Apr 25, 2018 12:44 PM

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Thank you- I will definitely study that link ASAP. I am 46 years old, in good health otherwise, and mine was a low grade tumor, the surgeon removed 90 percent of it

RE: Grade 2 oligodendroglioma with deletions-treat or wait?

by FrankeW on Thu Apr 26, 2018 01:24 AM

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Oligo Grade 3 here  - 98+% resected in 2014.  I have the favorable deletions also and my neuro oncologist said radiation should be delayed as long as possible so I was on Temodar pill chemotherapy for almost a year.  Just had an MRI on the 17th.  No recurrence.  I feel like I have been steered in the right direction so far.  Best wishes.

RE: Grade 2 oligodendroglioma with deletions-treat or wait?

by lamac72 on Thu May 31, 2018 03:59 PM

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On Apr 25, 2018 1:02 AM Renaelb wrote:

I am about a month out from having surgery. They were able to remove 90%. Because of the deletions I had assumed we would start pcv chemo, but my neuro wants to wait until we see growth on the mri. I have consults with the radiation oncologist and medical oncologists in the next week or two. Curious if anyone can offer their two cents of things to think about or questions to ask,etc? Thank you!

I had a grade 2 oligodendroglima with Co-deletions. My surgery said he took out 95-98% of tumor 14 hour surgery!

I had radition for 6 weeks after I healed from the surgery. That was 7 years ago.

I recently had a small growth come back this year and it was removed only 6 hour surgery. I am now on Temdor for 6-12 months. Isn't too bad only 5 days of pills per month and no hair loss!

Good luck and postitive thiniking goes a long ways in my opinion!!

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