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GBM Survivor

SaraD
Posts: 1
Joined: Jun 2018

I was just reading some of the posts in the brain cancer topic section. I noticed that people are lookiing for survival stories...well, I guess I am one! I was diagnosed with stage 4 GBM located in my medulla oblingata (brain stem) in January 2001. I was 6 months pregnant. Go forward 17 years and I am still alive and my son is an honor student going into his senior year of high school. Putting it that way makes it sound so easy, but it was anything but. My son and I are both walking miracles. Actually, he's a walking miracle, I am in a wheelchair because the tumor affected my right side (right arm & leg). I don't know what the secret is to beating cancer. There are a few things thay definitely do help.

1 - always ask questions

2 - always have someone with you at doctor appointments and take notes. You are given a lot of information and its difficult to remember everything

3- never lose hope  Cancer cannot take away your hope and faith. The doctor told me that I probably wouldn't live more than 2 years. He also said there's always hope.

4 - have a good support system. Your family & friends want to help. Let them!

5 - Rest when you need too, but don't stay down for long

If anyone would like more details, please let me know. I don't mind talking about it.

Keep Positive!!!

 

 

Lilywh
Posts: 1
Joined: Jul 2018

Hi Sara,

Your story is such an inspiration and gave my husband hope. We got married on July 8, 2017, in February 2018 I came home to find him having a stroke. It turned out his brain was bleeding and he needed immediate brain surgery to reduce swelling and remove a large blood clot. The neurosurgeon told us he had an inoperable AVM (Arteriovenous Malformation) and would likely need radiation down the line. Because his right side and speech was impacted, he started physical, occupational, and speech therapy. Fast forward 5 months, he was getting excruciating headaches and one day was worse than others, he was rushed to a different nearby hospital and was bleeding again. They performed a second craniotomy and this time the neurosurgeons found a tumor that turned out to be grade 3 Glioma, and not an AVM like we had thought. They were able to remove about 90% of the tumor and he will begin treatment in about a month. He is 27 and looking for survival stories as he would like to live a long life and have children. Your story is amazing and really cheered him up. I’d love to hear more about your journey if you‘re willing. Hoping everything is going well for you. Feel free to reach out at Lilywrenhen@gmail.com 

suncali81
Posts: 1
Joined: Aug 2018

Sara D;

Thank you for ypur story. Can you tell me where you treated? Was itin NYC? My spouse has been recently diagnosed with GBM and we re looking for the best treatment. 

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