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Oligodendroglioma Grade II - Update

AshleyWF's picture
AshleyWF
Posts: 46
Joined: Aug 2011

It has been a while since I have been around, thought I would post an update on me and Jordan.

 

Jordan was diagnosed three years ago with Oligodendroglioma Grade II. He had a partial removal and has been on the wait and see program since then. There has been no growth, no effects from surgery other than.... he is now able to have children! Shortly after Jordans surgery we found out we were pregnant. We now have a 15 month old son, Kane! :)

 

All Jordan's MRI's have been clear. He was back to work just over a month after surgery. We bought our first home, we live life everyday like we may not have the next! Jordan has the odd headache and had a short term on a steroid (headaches were constant for a while). He is now off them and the headaches have disapeared. I think it may have been the stress of a new colic baby in the house! ha!

 

Would love to touch base again with everyone we were in contact with when first diagnosed. Hear how everyone is doing.

 

Ashley

sadinholland
Posts: 248
Joined: Apr 2011

My husband was diagnosed in 2010. Congratulations on your new baby and new home.I am  glad to hear all is well and no recurrence. My husband is still in the fight, now on Lomustine for recurrence. Good to hear from you! Praise God for all being well for you guys! Enjoy life and each other! God Bless

cindysuetoyou's picture
cindysuetoyou
Posts: 514
Joined: Dec 2009

Hi Ashley and Sadinholland. 

I haven't been on this board in a long time. Like maybe two years? I remember you both and I am so glad to hear that your loved ones are still fighting! And special congratulations to you, Ashley, on the birth of your son. Such wonderful news!

I'm guessing you both know/remember that David lost his battle on October 15, 2012. It feels like yesterday. I'm going on with life but I will never be the same. My life is full of blessings, but some of the sparkle and shine has faded. I don't think I will ever really recover from David's death. 

But I do take a huge amount of comfort and joy, knowing that your loved ones are winning the battle. 

 

Love and blessings to you both, always!

Cindy

in Salem, Oregon. 

 

Rymatt4
Posts: 1
Joined: Jun 2015

I'm new to this whole thing.  i was diagnosed on 10/31/14 with an astrocytoma.  Six weeks later 12/16/15 I was at Brigham Womens Hospital in Boston getting the tumor removed.  Only 90% could be removed.  Keppra was not a good drug for me.  I had Keppra rage.  So they have me on Vimpat for seizures.  I hope not to be on anti seizure medicine for the rest of my life.  There is not a day i don't think about Oli.  Two weeks after my surgery 1/3/15, when I was to be in recovery my husband had a stroke.  No lie.  He said my hospital bill caused his stroke.  LOL.  Not funny at all I know.  I am on the wait and see and monitor regime as well.  I have two young boys and worry for their future.  I want to live a long life.  I didn't ask for this and I don't want this.  Yes I still have some issues, anger issues but I am getting help for that.  I went back to work on Wenesday this week.  3 hours a day for two weeks to increase slowly. I find I am extremely tired and still have headaches.  Not sure if anyone else experiences this.  My first mri after the surgery showed no growth.  I go back for the next one in August. 

Thanks for listening.  I needed to get this off my chest.  Thank you!

Carol 

Oli2
Posts: 2
Joined: Jun 2015

I am 53 years old.  I have had an oligendioglioma since January 2010 and had 2 craniotomies.   Last year I had proton therapy and I am now on oral chemo.   I am taking oral chemo (5 days on 23 days for twelve months.  I am going in my 10th month now and I must say that I am feeling great.  No tumor growth.  Ihave 3 kids 18-23 and try to stay positive.  The more I look on the internet on what could happen etc.  the worse I feel.  Therefore, I started Yoga, eat healthy, get out of the house with or without family and try to limit my computer time to 1 hour or so per day.  OK enough about me.  Best wishes to all people battling cancer and cancer survivors.   Carin

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