My wife just diagnosed with Anaplastic Oligodendroglioma, grade 3. I'm scared.

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My wife just diagnosed with Anaplastic Oligodendroglioma, grade 3. I'm scared.

by GiuseppeG on Mon Apr 22, 2019 06:11 PM

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Hi,  

My wife (33) had a partial resection a few weeks ago.  Recovery has been great. The surgeon was amazing, removed much of it, and aside from her scar, you'd never know she just had brain surgery. She was  ready to go back to work a week later (she insisted on it, her boss wanted her to keep resting). Then we got the Pathology report: AOD, grade 3. She has done her best to avoid Google, and was waiting to hear from the Neuro Oncologist first (we're going tomorrow), rather than preemptively worry about statistics and stories that may or may not apply to her. I wasn't so smart. This stupid cancer doesn't let up. It comes back over and over, worse than before. The word "terminal" is in every treatment article about it. She's the smartest, strongest, most positive person I've ever known, and I'm so scared for her. I can't sleep, I have to constantly fight tears and distract my mind when we're together, and can't hold it in when she's away. I don't know how I'll hold it together tomorrow, let alone through all that's ahead. How do you give the person you love hope and joy in what seems like a hopelessly horrible situation?

RE: My wife just diagnosed with Anaplastic Oligodendroglioma, grade 3. I'm scared.

by StillMe on Thu Apr 25, 2019 04:33 PM

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Hi GiuseppeG,

I was diagnosed with oligodendroglioma, grade 2 in 2016 and am feeling well three years later. Everyone's cancer is different and the experience of it is different and how it expresses itself is different. Yes, the internet is full of all kinds of things - and yes, I've looked at them - but I try to live my life day by day, moment by moment. I celebrate when I feel well and I do what I can do and fill my life with all kinds of bucket list experiences as much as possible, just in case (hey, many people never get around to doing this - ever!). And when I don't feel as well I try to figure out why and re-balance my life and enjoy rest. It is quite a journey, but my experience has definitely NOT been all hopeless and horrible - in fact, I've discovered a great deal about myself and have experienced an incredible amount of love and support along the way. 

It's totally normal to be scared - try to be gentle with yourself as best you can. You will need to take care of yourself in order to help your wife deal with her diagnosis. My suggestion is to get into weekly counseling - it's what my husband has done/is doing, and it helps over time. You might want to find a support group - my husband has a prayer group he's been a part of that meets weekly.  You could find one at your place of worship, if you have one, or through the hospital or maybe a local cancer organization. I'd suggest starting to exercise (or continuing if you already do) regularly - it really helps relieve stress and puts you in a good frame of mind. Eat a healthy diet (more on this in a moment). If you have kids, try to learn about what they need - it's sometimes different than what adults need and it can affect them differently. They'll need your help.

Although I totally get wanting to "give the person you love hope and joy." I can hear in your message how much you love your wife. She totally needs your love! But also try to remember that while you are on this journey with her, part of it is HER journey alone. No matter how much you love her, you can't do the journey for her (as much as you might want to.) But you can accompany her, you can be there with her, finding out what SHE needs. You don't really ever "give" another person joy, in some senses - you can help her DISCOVER joy, you can learn to better be able to open your eyes to the joy in the journey you are on with her (and I can tell you, there IS joy to be found!), and help her to do the same. 

Little miracles are everywhere, when you look for them. Learning how to be thankful in the midst of crisis is one of the most amazing miracles I have experienced on this journey.

It's okay to be scared. It really is. So, so normal. But you want to support yourself and your wife so that neither of you gets stuck in that fear, because fear is a crappy place to live out of. You don't have to live there, but it takes a lot of effort, everyday to choose a different path. Hope really is a choice, in many ways. The best way to help your wife have it (which it really sounds like she does) is for you to nuture it in yourself - again, I suggest counseling, meditation, support groups/friends, exercise - and really good nutrition.

The doctors will tell you, maybe, that there's not much you can do. I think that's not true. I chose to change my diet completely the day I was diagnosed and my husband cooked it for me and changed his diet with me. We now eat an all-organic, ketogenic diet. I believe it helps - not only because food can be seen as medicine you eat 3 times a day, but also because it gives me something I can do to help myself. Look up David Servan-Schreiber and his book "Anti-Cancer: A New Way of Life." It really got me tuned in to what nutrition could do for me in my journey. I also work with a nutritional group called Nutritional-Solutions (mentione in Servan-Schreiber's book) to do blood tests to fine tune ways to get my A1C and blood sugar down. I take supplements helpful to people with brain cancer. I go to physical therapy and massage therepy every week to help muscles that have been affected by the tumor; I do neurofeedback and take melatonin to help with sleep.

Try not to think of it as "terminal," no matter what the articles say. We are all "terminal" in one way or another - no one really knows how long they will live. It comes down to HOW you live and the attitude you bring to it. If we change our attitudes, we change our lives. I look at my disease as a challenge, but also as a blessing on many levels because I've allowed it to change me for the better. I look at it as sort of a chronic illness I have to manage, not a death sentence.

Do I wish I hadn't had to deal with an oligodendroglioma? Yes and no. It's scary. It's a challenge. It's a hassle. It's caused pain to my loved ones and it has changed their lives as well as mine. But the changes have brought good with the bad, and we wouldn't be "us" without them. I love us, and who we have become - and are becoming.

You can do this. You are not alone. Take a deep breath and enjoy the feeling of the exhale. Take it one moment at a time and really LIVE each moment. 

RE: My wife just diagnosed with Anaplastic Oligodendroglioma, grade 3. I'm scared.

by bdana on Thu Apr 25, 2019 05:25 PM

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Hi GiuseppeG,

I was diagnosed with a Grade 3 anaplastic astrocytoma in an inoperable area. I had a biopsy and the standard treatment. I was diagnosed in August, 2013 and have had no recurrence. The most reassuring thing I heard was from my radiation oncologist.  He told me that his goal was to get me from life-threatening situation to a place where I would be living with a chronic condition - pretty much like diabetes or high blood pressure.  I finished my treatments five years ago next month.  Brain tumor survivors are living longer and longer and the research is advancing faster and faster so I am very hopeful that I will live to see a treatment that holds these tumors in an inactive state.  I have doctors I trust and a husband who is my rock.  All is not hopeless.  Chin up and carry on! I will be holding you and your wife in good thoughts.

Belinda

RE: My wife just diagnosed with Anaplastic Oligodendroglioma, grade 3. I'm scared.

by tdevore on Thu Apr 25, 2019 06:14 PM

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my wife had surgery 5 years ago for an Oli and is doing well. This is the best site on the web to speak with others about treatment and to get support and find out what others have done. god bless you and good luck. sign up to be on the email forum.

https://braintrust.org/groups/oligo/

RE: My wife just diagnosed with Anaplastic Oligodendroglioma, grade 3. I'm scared.

by FrankeW on Fri Apr 26, 2019 02:18 AM

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I am a 5 year, 5 months survivor of Oligodendroglioma Grade 3 brain cancer.  Gross total resection.  Was on Temodar for a year.  No recurrence so far.  Keep positive!  Take care, Franke

RE: My wife just diagnosed with Anaplastic Oligodendroglioma, grade 3. I'm scared.

by AussieMarg on Sat Apr 27, 2019 12:38 PM

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On Apr 22, 2019 6:11 PM GiuseppeG wrote:

Hi,  

My wife (33) had a partial resection a few weeks ago.  Recovery has been great. The surgeon was amazing, removed much of it, and aside from her scar, you'd never know she just had brain surgery. She was  ready to go back to work a week later (she insisted on it, her boss wanted her to keep resting). Then we got the Pathology report: AOD, grade 3. She has done her best to avoid Google, and was waiting to hear from the Neuro Oncologist first (we're going tomorrow), rather than preemptively worry about statistics and stories that may or may not apply to her. I wasn't so smart. This stupid cancer doesn't let up. It comes back over and over, worse than before. The word "terminal" is in every treatment article about it. She's the smartest, strongest, most positive person I've ever known, and I'm so scared for her. I can't sleep, I have to constantly fight tears and distract my mind when we're together, and can't hold it in when she's away. I don't know how I'll hold it together tomorrow, let alone through all that's ahead. How do you give the person you love hope and joy in what seems like a hopelessly horrible situation?

I was diagnosed with Anaplastic oligodrendroglioma Stage 3 brain cancer on the 22nd August 2014 at 2.30 pm. I was so scared for my life and freaked out when I realised that I had to phone my three sons who were living in different states to me at the time. I underwent brain surgery to remove a small piece of the cancerous tumour as it covered one THIRD of my brain and was impossible to remove. A 16mm by 6mm by 6mm was removed to check that the diognoses was 100 % correct. I opted for no chemotherapy as I have severe chemical sensitivities which always result in convulsions  The Princess Alexandra Hospital in Brisbane gave me fifteen DOUBLE doses of radiation therapy whilst in a High Care level nursing home. I escaped fron the nursing home six months later to live by myself and my dearly loved Maine Coon X cat who was in a cattery for eleven months to the day. Last year in September I was well enough to go to New Zealand with my youngest son. We travelled in a rented camper van and had a great time. We covered 5,000 kilometers in three and a half weeks. I also have an under active thyroid gland and BLASTED kidney stones which has depletion my energy levels. At the moment my brain cancer is the least of my worries  It's the kidney stones along with Diabetes 2 which give me the most grief at the moment, especially the kidney stones. I have the 1p19q heriditory depletion which means that I will live a few more years than people who don't want to this depletion 

Being scared is a normal part of adapting to either having cancer or a loved one who has been diagnosed with brain cancer. I still have a few items on my wishlist that I intend to use. I want to go horse riding and go for a ride on a Harley Davison old style classic bike. I know who to go to as she's already invited me. So as soon as I'm rid of the blasted kidney stones I'm going. 

Sincerely Aussie Marg. 

RE: My wife just diagnosed with Anaplastic Oligodendroglioma, grade 3. I'm scared.

by schmidtdvm on Sun Apr 28, 2019 03:49 PM

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I am 10.5 years out after being diagnosed with anaplastic astrocytoma grade 3. There is hope and life beyond this.

RE: My wife just diagnosed with Anaplastic Oligodendroglioma, grade 3. I'm scared.

by Shell2018 on Sun Apr 28, 2019 05:30 PM

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Schmidtdvm ; Wow  your story is so encourage, 10yesrs and 5months!!!!! My 28years old daughter has diagnosed AA3 last August, had 90%+ resection, RT and TMZ,  current is on 6mo TMZ treatment. I want to know if you take any supplement after the STD treatment? Have you ever tried Cocktail therapy?

Thanks and best wishes.

Shell

RE: My wife just diagnosed with Anaplastic Oligodendroglioma, grade 3. I'm scared.

by Shell2018 on Sun Apr 28, 2019 05:31 PM

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Schmidtdvm ; Wow  your story is so encourage, 10yesrs and 5months!!!!! My 28years old daughter has diagnosed AA3 last August, had 90%+ resection, RT and TMZ,  current is on 6mo TMZ treatment. I want to know if you take any supplement after the STD treatment? Have you ever tried Cocktail therapy?

Thanks and best wishes.

Shell

RE: My wife just diagnosed with Anaplastic Oligodendroglioma, grade 3. I'm scared.

by ksavage523 on Sun Apr 28, 2019 10:26 PM

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I am so so sorry to hear this, I will keep you both in my prayers. I was diagnosed in January 2010 with an AID. I went through 6 weeks of radiation with on Chemo (Temodar) followed by 1.5 years of Temodar. I am cancer free to this day and live every day like it never happened ( though every time I wash my hair I am reminded ??) my wife at the time was 7 month pregnant with our first child and it is/was much harder on her than it was on me, I think and cancer survivor would say that it’s tougher on the spouse/significant other and family. Don’t google! The published material is historical and new advances are coming out every year. Trust in God, pray and live everyday to its fullest. I will PM you my email if you ever want to talk. Be strong, have faith that the Lord will pull you both trough it . Ken
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