anaplastic oligodendroglioma

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anaplastic oligodendroglioma

by nudmfree2 on Sun Oct 28, 2018 03:11 AM

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Anyone else with stage 3 anaplastic oligodendroglioma?

RE: anaplastic oligodendroglioma

by nudmfree2 on Sun Oct 28, 2018 03:13 AM

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On Oct 28, 2018 3:11 AM nudmfree2 wrote:

Anyone else with stage 3 anaplastic oligodendroglioma?

I am sorry, stage 4

RE: anaplastic oligodendroglioma

by AussieMarg on Fri Nov 30, 2018 09:28 AM

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On Oct 28, 2018 3:13 AM nudmfree2 wrote:

On Oct 28, 2018 3:11 AM nudmfree2 wrote:

Anyone else with stage 3 anaplastic oligodendroglioma?

I am sorry, stage 4

Yes I'm Aussie Marg and on the 08 August 2014 I was diagnosed with Anaplastic oligodrendroglioma Stage 3 brain cancer which is the highest grade of this particular brain cancer. I underwent brain ?? surgery to remove a small piece of my brain ?? tissue to be sent to palothogy at the Princess Alexandra Hospital in Brisbane Queensland Australia ????. My brain ?? cancer covered a quarter of my brain so was far too large to be removed. I underwent FIFTEEN DOUBLE doses of radiation therapy whilst in a High Care level nursing home. I was in the nursing home for six months while I recovered from the radiation treatment which really knocked me around. My brain cancer has been stable for just over three and a half years. ?? This lady September I travelled to beautiful New Zealand with my youngest son who paid for our trip in a eight metre camper van. We travelled over 5,000 kilometers in three and a half weeks. ?? OK I was exhausted when we returned to Australia ???? but as my son said "Mum you have to do this trip while you still can" I stayed with both of my Kiwi cousins, one who lives on a farm. I took my purple walker who I have christened Willie The Wheelie Walker. She's named after a lady who I knew when I was a kid living on a small crops farm at Marmor in Central Queensland Australia ????

I went salmon fishing ?? with my son and I caught the biggest salmon ner ner  ?? I sat on the seat of Willie to reel the salmon into the bank and my son landed the fish. ?? Willie doesn't have any working brakes and I can't swim so I planted my feet very firmly on the ground and hauled in the very yummy ?? salmon. 

I have told this story to try and help someone else with a recent diognoses of brain ?? cancer especially Anaplastic oligodrendroglioma Stage 3 brain cancer. 

RE: anaplastic oligodendroglioma

by FrankeW on Thu Dec 06, 2018 05:46 PM

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Me!  (Grade 3) On January 7, 2019 I will be a five year survivor!  Surgery 2-18-2014 at UCSF - Dr. Mitchell Berger, Temodar chemotherapy for one year, no seizures since surgery and no recurrence so far.  Best wishes!

RE: anaplastic oligodendroglioma

by ottoh on Fri Dec 07, 2018 06:06 PM

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Dr. Berger removed my wifes tumor as well! She's now 3 years out. He is a great surgeon!! 

RE: anaplastic oligodendroglioma

by AussieMarg on Fri Dec 07, 2018 09:17 PM

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On Dec 07, 2018 6:06 PM ottoh wrote:

Dr. Berger removed my wifes tumor as well! She's now 3 years out. He is a great surgeon!! 

May I ask you how large was your wife's brain tumour that the surgeon was able to remove all of the cancerous tumour ? I'm asking you because my Stage 3 brain cancer Ananaplastic oligodrendroglioma was far too large to remove. It not only covered one quarter of my brain but it had tenticle like structures going very deep into my brain. My brain surgery team at the Princess Alexandra Hospital in Brisbane Queensland Australia could only remove a small sample for pathology testing. Now I have what I call a "cute little dent" in my skull with three titanium plates and six screws.

Sincerely Aussie Marg. 

RE: anaplastic oligodendroglioma

by ottoh on Fri Dec 07, 2018 09:43 PM

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I want to say it was 5cm but am not sure anymore. It was the size of a small orange in her front right temporal lobe. We enrolled her in the ALA-5 clnical trial @ UCSF and Dr. Berger was the surgeon. Google the ALA-5 trials. They inject you with a chemical that when they get all that they can see of the tumor, they turn out the lights and turn on a black light that lights up the remaining pieces of the tumor to a floresent bright orange glow so they can get a lot more of the tenticles and pieces they may not have seen. They also did a scan on her brain to see what was functioning and what was'nt so they could take a margin. My wife has a cute dent as well! ;-)) If you haven't researched the use of CBD and THC oils, I would highly recommend you do. There are clinical trials going on @ GW Pharmacuticals with CBD,THC, and Temador chemo that they are having great success with. We have had her on them and I believe they are a major reason she has not had a relapse. I wish you all the best Marg and stay strong! It ain't over till it's over. There is always hope. 

RE: anaplastic oligodendroglioma

by FrankeW on Sun Dec 09, 2018 08:58 PM

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I have been using CBD oil too for the last six months.

RE: anaplastic oligodendroglioma

by AussieMarg on Sun Dec 09, 2018 11:11 PM

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On Dec 07, 2018 9:43 PM ottoh wrote:

I want to say it was 5cm but am not sure anymore. It was the size of a small orange in her front right temporal lobe. We enrolled her in the ALA-5 clnical trial @ UCSF and Dr. Berger was the surgeon. Google the ALA-5 trials. They inject you with a chemical that when they get all that they can see of the tumor, they turn out the lights and turn on a black light that lights up the remaining pieces of the tumor to a floresent bright orange glow so they can get a lot more of the tenticles and pieces they may not have seen. They also did a scan on her brain to see what was functioning and what was'nt so they could take a margin. My wife has a cute dent as well! ;-)) If you haven't researched the use of CBD and THC oils, I would highly recommend you do. There are clinical trials going on @ GW Pharmacuticals with CBD,THC, and Temador chemo that they are having great success with. We have had her on them and I believe they are a major reason she has not had a relapse. I wish you all the best Marg and stay strong! It ain't over till it's over. There is always hope. 

Hi again, 

So if your wife's tumour was approximately five centremetres across it would have been about the size of an egg. I found another lady who has the exact brain cancer that I have and even with the 1p19q deletion. This lady's brain tumour was also completely removed whereas mine was too large. I think that I have mentioned I had fifteen double doses of radiation therapy at the Princess Alexandra Hospital in Brisbane Queensland Australia. As I also have had extreme chemical sensitivities which always result in severe convulsions for the past thirty years I have to be very careful with what I breathe in, eat and drink. Apart from my extreme chemical sensitivities I can't afford the expense of medical Cannibis oil. Even IF the oil was affordable I still won't take it risk because of my extreme chemical sensitivities. What I was advised to do by Dr. Sandra Cabot was to take at least one Organic Selenium capsule. I take one in the morning and also one at night. Organic Selenium is an antioxidant which strengthens our immune system. I'm also a happy and positive person by nature so I believe it's what I'm doing as well as my very positive attitude towards life AND my brain cancer is why I'm doing so well. I have also always eaten a very healthy diet and for since August 2014 I have become even more conscious about the diet and having a healthy lifestyle.

Sincerely Aussie Marg. 

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