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parker80138
@parker80138
Posts: 8 Joined: May 02, 2016

Anaplastic astrocytoma: Can anyone recommend a great neurosurgeon?

Posted by parker80138 @parker80138, May 2, 2016

Can anyone recommend a great neurosurgeon for my 34 year old daughter that was just diagnosed with anaplastic astrocytoma on April 29, 2016. She has Kaiser insurance and we are trying to get authorization to go outside their network for treatment. Thanks!

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Colleen Young, Connect Director
@colleenyoung
Posts: 7881 Joined: Jul 23, 2014
Posted by Colleen Young, Connect Director @colleenyoung, Jul 23, 2016
In reply to @parker80138 "Hi - Thanks for asking. Lot's of activity since the initial diagnosis...." + (show)
@parker80138

Hi – Thanks for asking. Lot’s of activity since the initial diagnosis. Here is a summary.

My 34 year old daughter was diagnosed with AA in April. She had two surgeries to resect the tumor. The first surgeon was not the best choice but we ended up finding a very good team at CU Denver Anschutz Medical Center which happens to be where she works. They used technology that is literally on the leading edge of brain surgery. She was the first patient to have inter-operative MRI used during her awake craniotomy in the state of Colorado and the surgeon estimates less than 25 have been performed nationally. They also used neuro-navigation, awake cortical mapping, and fluorescein dye to illuminate the tumor during the resection. That surgery was June 1st and she has returned to her job full time while participating in the standard Temodar and radiation treatments. She is dealing with some aphasia but it seems to be getting better as each week passes and her speech pathologist thinks she will make a full recovery with the aphasia.

We have also hired Dr. Hartmut Stecher in Seattle. He is the founder of a company called Cancer Treatment Navigator (http://www.cancertreatmentnavigator.com). Dr. Stecher is a biochemist, Ph. D. that specializes in immunotherapy options like dendritic cell based therapies, T-cell based therapies, cancer vaccination strategies, cytokine therapies, and recombinant antibody therapies. Hopefully we never have to use his services. If she does have a recurrence we want to be ready to act quickly.

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Thanks for the update @parker80138. She, and you, have been through a lot! And she has been able to return to work full time already. So glad to hear. Also glad that you’re prepared to act quickly for what the future might bring.

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bjh369
@bjh369
Posts: 60 Joined: Dec 25, 2018
Posted by bjh369 @bjh369, Sun, Jan 6 10:26am

I had a surgery team and a great Doctor from Barrows Brain and Spine here in Arizona.

Liked by Colleen Young, Connect Director

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carol55
@carol55
Posts: 4 Joined: Mar 20, 2018
Posted by carol55 @carol55, Sun, Jan 6 8:09pm
In reply to @bjh369 "I had a surgery team and a great Doctor from Barrows Brain..." + (show)
@bjh369

I had a surgery team and a great Doctor from Barrows Brain and Spine here in Arizona.

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bjh369, the moderator suggested I contact you. My husband was diagnosed March 1, 2018, had radiation, took Temozolomide for 6 months concurrent with the Optune cap. We have been very pleased with the Optune cap. It takes awhile to get use to and it is a team effort but well worth it. The Novocore Company is very supportive and informative. Feel free to ask me any questions you might have.

Liked by Colleen Young, Connect Director, Merry, Volunteer Mentor

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bjh369
@bjh369
Posts: 60 Joined: Dec 25, 2018
Posted by bjh369 @bjh369, Sat, Jan 12 8:05pm
In reply to @carol55 "bjh369, the moderator suggested I contact you. My husband was diagnosed March..." + (show)
@carol55

bjh369, the moderator suggested I contact you. My husband was diagnosed March 1, 2018, had radiation, took Temozolomide for 6 months concurrent with the Optune cap. We have been very pleased with the Optune cap. It takes awhile to get use to and it is a team effort but well worth it. The Novocore Company is very supportive and informative. Feel free to ask me any questions you might have.

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Dr Taro Kaibara and his team did my surgery from Barrows Brain and Spine. They did a great job.
Bobbe
Glioblastoma patient.

Liked by Merry, Volunteer Mentor

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