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Oligodendroglioma Grade 3 Healing Journey

gabolko
Posts: 4
Joined: Mar 2014

Hey you all, 

What a beautiful website.  I just wanted to stop by and post to share with you all a bit about my story and see what others have gone through in their healing.  Its amazing how we are all connected in this world.  In October of 2013 I was in a scooter accident and rushed to the ER.  They found a broken shoulder and because of where it was broken and near the spine, they legally performed a CAT scan and happened to find fogginess in the scan on my brain.  I had never had any symptoms that were related to a brain tumor, so this was shocking.  They then performed an MRI scan and announced I had brain cancer.  For the remainder of October and most of Novemeber I was in and out of the hospital.  3 MRIs later, A spinal tap, an EEG scan, and then followed by a biopsy I was shown I had an oligodendroglioma grade 3 in my left frontal temporal lobe.  This was an area where they said that if I wanted to perform a removal surgery, the most they would be able to take out would be about 40% and there were risks involved.  Instead they told me that I should begin radiation therapy immediately.

I chose not to get a surgery and also not to perform radiation.  As the side effects of both seemed threatening and could cause other massive physical ailments to my body.  Instead I invested and researched and began reached out to Dr. David Pearlmutter, writer of "The Grain Brain" also a man that through vitamins, lifestyle ideas and nutritition has cured patients with severe brain cancer.  I also reached out to the Tao of Wellness in Santa Monica, California and have been getting treatments by Dr. Maoshing Ni in acupuncture and chinese herbs.  Through diet, herbs, acupuncture, vitamins, and lifestyle I am creating a shift in my brain, as well as my life in other areas.  I have been blogging my entire healing journey if any of you all are interested in checking it out, the link is:

brainnewbeginning.blogspot.com

I also would love to interract with others who are or who have been through any similar or cancerous experience so we can share and bounce off each others stories.  I think everyones experience and bodies are all different but we are also so connected at the same time.  And, everyone has their own advice and opinions and ideas but I think most importantly it is helpful to seek out multiple types of information and then follow what our own bodies tell us to do because we are all different and the only person we truly have is ourselves and no one else can decide what our own bodies should do, including surgeons, doctors, etc...

Feel free to email me at gabolko@gmail.com - much love and healing support to you all and I look forward to sharing each others stories!

 

Gabrielle

barley1
Posts: 1
Joined: Jun 2014

Hi Gabrielle,

I am sorry to hear about what has happened to you. My mother was diagnosed with anaplastic oligodendroglioma 3 grade a  couple of months ago. She had a surgery, I don’t know if the whole tumor was removed or not. Now she has a  radiation course and after I think also a  chemotherapy. I have been researching online about this disease and also saw that a lot can be helped by making some changes to the diet, lifestyle, healthy eating etc.  I read that people recommend eating things that create alkaline environment in the body opposite the acidic one. It means eating more vegetables, fruits, ets.  not processed foods, meat or sugar.  Also I read that some supplements might help like barley grass , there was one brand mentioned barley power ,  but I have no idea what supplements and  herbs are effective? Also people say that eating seeds of apricots help, almonds and even fasting can rebuild immune system. I would like to get some supplements for my mother and anything really that could help, and was wondering what actually works as there are so many things out there and it is easily to get confused and also many people are just selling everything to just  make money even if  it doesn’t help patients! Thank you for sharing your story! I wish you to be healed and back to a healthy life and I also will have a thorough look at your blog! Thank you a lot!   

kwt
Posts: 1
Joined: Oct 2003

My daughteinlaw was told yesterday that she has anaplastic oligodendroglioma  this was after only some bloodwork and a CAT scan no biopsy has been done. They want her to start chemo on Monday. I do not feel safe with this until a biopsy is done. I lost my husband in 2003 of GMB which was diagnosed after he had a seizure and they did a MRi before but the diagnose was not made final in till the biopsy was done. I just want to make sure she is getting the proper treatment she is only 27 and has two small children.

sadinholland
Posts: 245
Joined: Apr 2011

I agree Kwt,

My husband's doctor thought his tumor was a GBM before his surgery, and it ended up being an anaplastic oligodendroglioma. I don't know how they could be sure unless they do a biopsy or resection. i would suggest a second opinion. I am so sorry your daughter is going through this. I will be praying for both of you.

 

God Bless!

 

BenLenBo's picture
BenLenBo
Posts: 145
Joined: Feb 2012

KWT,

       My tumor was removed by Surgeon's from Mayo, unable to dx tumor right from surgery.  My tumor samples were sent to John Hopkins in Baltimore, MD,

very rare, and then a genetic molecular test was done to see if I had the deletions 1p19q which I have.  Deletions determine how the radiation/chemo will  work

on this type of tumor, which has fingerlings that cross over in the brain if not totally destroyed.  I would consider a second opinion, if it was my daughter, fighting

a brain tumor.  You have to know what you are working with, to obtain the correct treatment.  My treatment facilities are Roger Maris Cancer Center, Mayo and

John Hopkins.  I have been tumor and cancer free from the day of my surgery to remove my tumor of the left frontal lobe.  Have had to side effects, and living

life as normal and healthy. 

      Just remember to Fight, Fight and Fight some more, and ask questions until you are all comfortable with the answers.

 

Benjamin

momplut
Posts: 2
Joined: Jul 2010

I am back on here after being absent for few years.  I have Oliogdendroglioma.  First diagnosed as Multiple Sclerosis in 2002.  Started on MS injections (Copaxone) in 2003.  Had issues in late 2004 where I just had a feeling the injections were not right for me, so I stopped them.  I'm single mom of 3 children, now 25(twins-boy and girl) and 30(girl)  When this first started they were 13 and 18 years old.  In 2007 after one of my every 4-6 month MRI checkups and visit to VA (I am also a US Navy veteran) I was told that one of the "atypical" MS lesions had grown and that MS lesions do not grow, so they did a biopsy.  VA diagnosed it as an Astrocytoma, howvever, being that it was right frontal/temporal lobe the VA in Pittsburgh did not have proper equipment to safely remove it so I was sent out to UPMC Pittsburgh/Hillman Cancer center where, the month after the VA biopsy, I had an awake crainectomy where they removed what they could of it.  I then underwent 13 rounds of chemo with Temodar.  The last round was in January 2009.  It has been "stable" ever since.  I went back to work after my surgeries and worked through chemo.  But, in 2011/2012 the headaches, memory issues, spasms made it such that I just couldnt continue working in my usual field any longer..... The headaches can get pretty bad.  I often cant get my words out.  I have read how some people use herbs and special diets to help.  I wish I had money to get a nutritionist or whoever could help me to show me how to do this.  So that maybe just maybe I can somehow improve my symptoms and yes, even improve them "scramble eggs" the chicken wire of cancer cells that infiltrate and sit there as a ticking time bomb just waiting to reform a tumor and start the cycle of brain cancer reatment... Can anybody point me to natural remedies/treatments somewhere???? As I mentinoed I am now not working and well, wish I could, but most of all, just want to have a better quality of life for my kids and grandkids????

Thanks

 

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