What's your Oligodendroglioma story?

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RE: What's your Oligodendroglioma story?

by Lingg95 on Sat Jul 29, 2017 10:11 AM

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I got the reply anyway :) thanks I would appreciate that. Our doctor seems to beat around the bush when we ask her questions hopefully you're will tell you more.

RE: What's your Oligodendroglioma story?

by jefuchs on Thu Aug 03, 2017 04:30 PM

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I started this thread, and I haven't posted an update in a long time.

My wife passed away in January of this year.  For the last year of her life, the cancer was growing more aggressively, and nothing had any effect on it.

She lived seven years, which is considerably less than average.  From the beginning, doctors told us that her cancer appeared more aggressive than the biopsy results indicated.  Their instincts seem to have been right.

RE: What's your Oligodendroglioma story?

by Lingg95 on Thu Aug 03, 2017 07:27 PM

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Sorry to hear that. I offer my condolences to you and your families. I feel like our doctor is beating around the bush and doesn't want to tell us much. I fear that the cancer is worse than they say it is. Because of the fast progression I hope I'm wrong but who knows aye. It's good to hear other people's stories though, it gives me some insight into what to expect.

RE: What's your Oligodendroglioma story?

by tamavara on Mon Aug 28, 2017 12:18 AM

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My 21 yr old son had just finished Firefighter School and was in the last semester of Paramedicine when he suffered 2 grand mal seizures. Upon CT/MRI/Surgery he was diagnosed with Grade 2 Oligodendroglioma located on part of his motor strip. Surgeon wouldnt touch it. Got a 2nd opinion and that surgeon agreed with 1st one. Was told he had about 5 yrs to live. Of course he wasn't taking that for an answer and we went to MD Anderson,Houston and Dr Prabhu was able to remove 85% of the tumor, leaving the 15% on the motorstrip. He became a Firefighter/Paramedic and was put on seizure meds. Checkups every 3 months. 6 years ago the tumor had hot spots in it. They put him on Temodar for 13 months. Stopped the growth. 5 years later, in December of 2016 at his checkup, they found that the tumor was growing again. They will do surgery again in Sept to remove as much as they can. He is doing great, living each day to the fullest and fulfilling his dream as a Firefighter. None of us are promised tomorrow so he worries not about it. He skydives, snowskis and travels all over the world.

RE: What's your Oligodendroglioma story?

by jefuchs on Mon Aug 28, 2017 02:57 AM

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My wife had a resection by dr. Prabhu.  We expected a short man with a mustache.  Not a tall handsome guy in cowboy boots.

RE: What's your Oligodendroglioma story?

by nbarh on Mon Oct 02, 2017 04:55 PM

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Hi Shaiv,

My husband was recently dignosed in August of this year.  90 percent of the tumor was removed on 9/05/17, his was orignially thought to be a Grade 2 but after surgery patholodgy concluded a 3.  He has the favor deletion and just started radiation with chemo (PCV) to follow.  I firmly believe in food being the best medicine - even though none of the doctors provided any feedback or agreed with this thought.  My husband has been vegan previously, do you incorporate fish in your diet?  What foods do you incorporate?  Thanks

RE: What's your Oligodendroglioma story?

by nbarh on Mon Oct 02, 2017 05:03 PM

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Hi Shaiv,

My husband was recently dignosed in August of this year.  90 percent of the tumor was removed on 9/05/17, his was orignially thought to be a Grade 2 but after surgery patholodgy concluded a 3.  He has the favor deletion and just started radiation with chemo (PCV) to follow.  I firmly believe in food being the best medicine - even though none of the doctors provided any feedback or agreed with this thought.  My husband has been vegan previously, do you incorporate fish in your diet?  What foods do you incorporate?  Sorry if this post came through twice, not sure I posted correclty.  Thanks!

RE: What's your Oligodendroglioma story?

by Lingg95 on Mon Oct 02, 2017 09:24 PM

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Same as my partner, I recommend eating a minimal sugar and dairy diet and include as many greens and vegetable as possible. I’ve read so much about these being good for it plus they’re full of the vitamins and minerals needing to heal and repair etc. I only wish my partner would try eating a healthier diet. He continuously eats sugary food and dairy foods, barely eats anything else and so far it’s all been bad news for us. Also an update on my partners treatment.. he was on temozolmide but we’ve just been told it hasn’t worked at all so he’s back on PVC again the docs will do a scan in 2 months to see if it’s touching the rumour at all. Fingers crossed for us x

RE: What's your Oligodendroglioma story?

by shariv on Wed Oct 04, 2017 11:45 PM

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On Oct 02, 2017 5:03 PM nbarh wrote:

Hi Shaiv,

My husband was recently dignosed in August of this year.  90 percent of the tumor was removed on 9/05/17, his was orignially thought to be a Grade 2 but after surgery patholodgy concluded a 3.  He has the favor deletion and just started radiation with chemo (PCV) to follow.  I firmly believe in food being the best medicine - even though none of the doctors provided any feedback or agreed with this thought.  My husband has been vegan previously, do you incorporate fish in your diet?  What foods do you incorporate?  Sorry if this post came through twice, not sure I posted correclty.  Thanks!

I'm sorry your husband (and you) are dealing with this. I'm glad he used to be a vegan. It will be easier for him to go back to it! I didn't eat well and ate a lot of junk food, so it was a big change for me. I eat a whole food, plant based diet. Only food with 1 ingredient (spinach, carrots, apple etc) and nuts/ seeds. No animal products, sugar, processed food, or junk food. I juiced about 32 oz of vegetables every day. Now I eat wild caught salmon once or twice a month. I hope this helps! Let me know if you have more questions. I'm praying his tumor disappears! Shari

RE: What's your Oligodendroglioma story?

by Lingg95 on Fri Oct 13, 2017 01:54 PM

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Hi, I know this is partially off subject, but has anyone experienced a huge behavioural change with this tumour, my partner has changed so much the past few weeks he’s almost unrecognisable, he is now very short tempered and doesn’t really tolerate much unless it’s about himself, his short term memory is shocking, he barely remembers what days it is or what happened the previous day. Sometimes he will get verbally aggressive towards me and then when I’m upset about itt in anyway he seems confused as to why I am upset. He has no recollection of saying anything that would upset me and thinks I’m just drink dramatic, he won’t even apologise for his behaviour he just says ‘I do have a brain tumour you know, my brain is working properly’ it’s quite sad really. But if anyone else has experienced this what have you done to help with this??
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