Support group for Oligodendrogliomas

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Support group for Oligodendrogliomas

by Fleming on Mon Jan 15, 2018 12:33 AM

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My 45 yr old daughter, Michele,!is wanting to talk to other People with oligodendrogliomas in the right frontal lobe about Issues they are having since surgery, radiation and Temodar.would appreciate hearing your comments

RE: Support group for Oligodendrogliomas

by lisagebbie on Mon Jan 15, 2018 01:53 PM

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My 45 yo daughter was diagnosed April 2017 with grade II oligodendroglioma. See my previous post. My daughter's tumor was not removed, only biopsied. She received Intensity Modulated Radiation Therapy [IMRT] and is now in her third cycle of PCV treatment. She sees Dr.Howard Fine at Cornell's Weil Brain Tumor Center every other month but gets her treatment at home in Rochester NY. I'm looking for folks who were not able to get their tumor removed. By the way, out specialist recommended PCV over Temodar. Hope your at a brain tumor center. Lisa

RE: Support group for Oligodendrogliomas

by rva02 on Tue Jan 16, 2018 05:18 PM

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There's a big support group on Facebook called 

Oligodendroglioma/Low-Grade Glioma Warriors 

if she just searches for that she can find it. Several hundreds oligodendroglioma survivors on there.

RE: Support group for Oligodendrogliomas

by Mack1994 on Wed Jan 31, 2018 07:31 PM

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On Jan 15, 2018 12:33 AM Fleming wrote:

My 45 yr old daughter, Michele,!is wanting to talk to other People with oligodendrogliomas in the right frontal lobe about Issues they are having since surgery, radiation and Temodar.would "" target="_blank" rel="nofollow">http://Temodar.would " target="_blank" rel="nofollow">Temodar.would appreciate hearing your comments

Hello Fleming

I was diagnosed with oligodendroglioma of the right frontal lobe in 1994, I underwent a total resection, at the time science did not have the knowledge about the cellular morphology as is known today, such as co deletion of 1p/19 q of the short arm of the chromosomes of the tumor cell 's DNA. They also did not know about IDH and MGMT METHYLATION PROMOTER GENE. All of which are biomarkers of having shown sensitivity to chemo, radiation and surgery. 

Oligodendrogliomas are slow growing and indolent, after I had resction in 1994 I was progression free until December of 2002, I underwent another total resection of the tumor that had progressed in the same area as the first tumor, I was reffered to neurooncology and I was put on Temodar, once a day for five days every 22 days for twelve cycles, in discussio with the neurooncologist he was against radiation because of radionecrosis, as I was working and wanted to continue to do so, I had asked about the efectiveness of the temodar and at the time he told me about three to five years.

It turned out I was progression free for 10 years, what a surprise it was that after ten years my MRI showed tumor progression again within the same area as previous progression, so I underwent another resection in 2013, the pathology showed it was still a grade 2, I opted for the surgery only as I wanted to continue working, but in November of 2016 I once again had tumor progression, I had a seizure despite being on anti seizure medication. The MRI once again showed tumor progression within the same area as previous tumor progression. However this time the neurosurgeon told me he could tell just by the image that the tumor had changed and was probably a grade three, but that tissue was needed to definately know, so in February of 2017 I underwent a fourth resection, the pathology confirming what the neurosurgeon had thought, the pathology was also revealing for the favorable bio markers as I previousy mentioned. 

I underwent 33 radiation treatments, five days a week Mon thru Friday, I experienced some fatigue and hair loss to the area being irradiated, I have always had a thick full head of hair so I had to get a bit creative wth my hairdresser. but now after three cycles of lomustine , procarbizine and vincristine I have a buzz cut, as my hair was thinning and was dry and damaged despite using premium hair products.

As to my surgeries, I was out of work for 6 to 8 weeks and returned to work upon clearance by my doctors, both neurooncology and neurosugery, however my last surgey I was out for ten weeks, I was just so tired all the time and was sleeping alot, but eventually my mental and physical energy slowly returned. I went back to work and retired this past June, at age 62, a little earlier than I wanted, but my wife and I planned carefully for this possibility.

Asfar as my experience with temodar I experienced fatigue and constipation and an occasional drop in my platelets.

This has not been without other difficulties, I experieced reactive depression after my first surgery and was on anti-depressants, my depression being characterized by anger and irritabilty, as the frontal lobes are where our personality arises from, after 8 months I was feeling myself and was weaned off the anti depressants. 

Your daughter is young, research has shown if diagnosed at a younger age, the better the long term prognosis, I was 39 when diagnosed, I'm now 62,also surgery, radiation and chemo is now the recognized standard of treatment. I truly think your daughter can look forward to longevity, you just get on with life as best you can and find that there still is a lot of life to live, myself I did not get to go the the beach as we usually do every year, so I'm looking forward to swimming in the ocean again, and I genuinly do appreciate the simple things in life that in the past I took for granted. Seeing you posted on behalf of your daughter that says to me you have a close and loving relationship with your daughter and that love you have will see you through together!

 I hope I have provided you both with some useful info and insight to this whole experience.

Wishing you the best, please keep in touch.

Mack1994. 

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