Questions about glioblastoma resection, radiation afterward

Posted by tracyknabel @tracyknabel, Oct 1, 2016

Hi. My husband was dx in Nov 2015 with grade IV glioblastoma. He had a biopsy but never a resection. (The tumor was in the thalamus region.) He began chemo and 6 weeks of radiation. He finished chemo in August. As of Sept 6th, the tumor has grown somewhat (encompassing the hippocampus) and the neuro-oncologist wants the resection done. His neurosurgeon thinks he has time however and should consider maybe more radiation. My question is this: why does my husband have to wait a year from the time his radiation ended to have another round of radiation done? And is it true that resection can cause the tumor to grow even faster? (The thalamic tumor cannot be removed.) Thank you for reading this.

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@colleenyoung

Ah Montana! I love that place and space. That's quite the greeting from your best friend and therapy!

@susanaz will love that you named the Optune device "Neptune". She actually gave her tumors names. I'll let her explain why. She tells it best.

Safe travels back to Mayo tomorrow. What's on tap for this visit?

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@tommydb, fabulous idea you're taking Neptune the planet and/or Neptune the mythological sea god for a whirl! Either way, anytime we can get a bit creative with our rogue cells, i think our journey becomes more like an adventure than a plain old medical crisis. My pineal tumor's name is Pinena, mostly because I Iike the alliterative sound. My smaller but mighty schwannoma's name is Pollyanna, just like the children's classic story, who serves as my everyday reminder to find things to be grateful for each day. Happy travels back to Mayo (aka The Emerald City). p.s. my best therapist is also from the school of canine!

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@colleenyoung

Tommy, I'm interested to hear how you think being a patient getting an MRI may shape or change your work as an MRI tech?

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We’ll, thanks to my tumor I’ll never do another MRI. I’m officially retired now at 59. Now I’ll spend a lot of time on Flathead lake (so beautiful) doing fishing tournaments etc

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@colleenyoung

Ah Montana! I love that place and space. That's quite the greeting from your best friend and therapy!

@susanaz will love that you named the Optune device "Neptune". She actually gave her tumors names. I'll let her explain why. She tells it best.

Safe travels back to Mayo tomorrow. What's on tap for this visit?

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MRI etc,…….sleep:))

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@colleenyoung

Ah Montana! I love that place and space. That's quite the greeting from your best friend and therapy!

@susanaz will love that you named the Optune device "Neptune". She actually gave her tumors names. I'll let her explain why. She tells it best.

Safe travels back to Mayo tomorrow. What's on tap for this visit?

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MRI plus a few appointments I don’t remember.

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@IndianaScott

Good day, @dfelix I am Scott and it is nice to e-meet you here. I am sorry for the travails your sister is undergoing. I send peace, strength, and courage. My wife fought GBM for 14 years. After her diagnosis her tumor remained slow growing, then it suddenly accelerated. Due to the location and other considerations the only intervention she chose was an early resection. Even when her tumor got more aggressive at Stage IV she chose home hospice as her option. She defied the doctors' best guesses of 6 months or less and won her war for 14 months. Unfortunately I have no advice on newer technologies, but I am sure they are legion! I know Dr. Daniel Lachance at Mayo Rochester has been involved in some truly phenomenal research on DNA fighting approaches to brain cancer.

I was her 24/7 caregiver during her war so if you have any caregiving questions feel free to ask.

Peace!

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My sister has GBM and she would love to walk with her dog (he cries and whines) like she used to, but her balance is off. Do you have any ideas what she can use to walk through the woods by her home? Thanks

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I don’t know how big the dog is. My parents have a little poodle and a carriage “fig stroller” for her. Holding on to that stroller with 360 wheels, helps them feel stable when they walk the dog. Wishing you and sister the best. 😊

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@dfelix

My sister has GBM and had surgery and chemo and tumor has come back. Looking for a good FDA study or some newer technology. Or just some advice from people with similar experience. Thanks

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There is a recent review article on Glioblastoma entitled, ´Glioblastoma: Current Therapies and Recent Therapeutic Advances´at personalize my medicine dot com
You may find it useful.

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