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HIghPlainsBrain
@kansastumor

Posts: 4
Joined: Jun 30, 2016

Recently dx with Anaplastic Astroctyoma - was your treament successful

Posted by @kansastumor, Jun 30, 2016

Looking to learn about other individuals experience with AA tumors. I recently finished 6 weeks radiation/temedar, with relatively few side effects. I am being treated at KU Med in Kansas City KS. I haven’t been given a very clear picture of my prognosis, which I understand is different for everyone. I am female, 33 years old. My tumor was located in the right frontal lobe, about the size of an egg. Had a successful surgery (I think) there was too much swelling in the post surgery MRI to know how much of tumor was left, I know it was not a 100% resection.

REPLY

Hi there. My husband has a Grade 3 AA, left temporal lobe, the tumor was 8cm large. He’s had two surgeries, one partial resection at first the second more aggressive. He completed 6 wks temodar/radiation then did 10 months temodar as a follow up. We’re in Baltimore so we go to Johns Hopkins. His first surgery was June 2011, the second was January 2014. His MRI’s are still clear at 2+ years, and we go every three months. You look young so I wanted to write back to you… it’s a scary process. My husband was 42 when he was diagnosed.

Welcome @amiceman.
What a lovely message of hope you write to @kansastumor. You may wish to join our little group talking about anaplastic astroctyoma on this discussion thread https://connect.mayoclinic.org/discussion/can-anyone-recommend-a-great-neurosurgeon-for-my-34-year-old-daughter/ where you’ll also meet @parker80138 @121861 @dmedina71 @egee202 as well as @kansastumor.

How did you find Mayo Clinic Connect?

@colleenyoung

Welcome @amiceman.
What a lovely message of hope you write to @kansastumor. You may wish to join our little group talking about anaplastic astroctyoma on this discussion thread https://connect.mayoclinic.org/discussion/can-anyone-recommend-a-great-neurosurgeon-for-my-34-year-old-daughter/ where you’ll also meet @parker80138 @121861 @dmedina71 @egee202 as well as @kansastumor.

How did you find Mayo Clinic Connect?

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Thank you for the compliment, i appreciate that! I will join the other group as well. I found Mayo Connect after subscribing to the Mayo “Living with Cancer” newsletter. As a caregiver I’m always seeking resources to help myself through this journey.

Hi Ms. Kansas, 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 Colorado and my the surgeons estimate 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. Is she does have a recurrence we want to be ready to act quickly. I hope you are feeling better and continue to get the best care available at KU Med.

@amiceman

Hi there. My husband has a Grade 3 AA, left temporal lobe, the tumor was 8cm large. He’s had two surgeries, one partial resection at first the second more aggressive. He completed 6 wks temodar/radiation then did 10 months temodar as a follow up. We’re in Baltimore so we go to Johns Hopkins. His first surgery was June 2011, the second was January 2014. His MRI’s are still clear at 2+ years, and we go every three months. You look young so I wanted to write back to you… it’s a scary process. My husband was 42 when he was diagnosed.

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The brain is likely the most complicated organ for all of our bodies
operations. You know it from what you’ve witnessed, as do I from when I
had ‘pressure on the brain’ due to forceptual delivery at birth. If a
mistake is made during surgery, it’s seldom able to be corrected. Although
my neurosurgeon team of Jones, Naffzeiger and Brown in 1946 after 3 hours
of operation, came to my mother and father and said; “if the slightest
mistake is made with any of our tools, he can be parilized for life, lose
his speech, hearing, vision and other abilities–what do you want us to
do?” My parents answered “close him up.” The third surgeon did the dirty
work of doing that. However, in the process, he severed a vein (which I
believe was a gift from GOD. That called the other surgeons in to repair
it–but after that “my seizures were able to be controlled with anti
seizure medications as hard as it was at times. I’d seek a second or even
third opinion on something like this, from the most reknowned doctors
available.

irvkay312

How are you doing with the continuing temedar treatments? I hope you are still tolerating with little or no side effects. My daughter completed the first 6.5 weeks of radiation/temedar and she is going to start the next round of temedar at triple the original dose on a 1 week treatment, 3 weeks rest interval next week. She will also have her first post-surgical MRI next week. She returned to work full time just a few weeks after the surgery and she has two young boys at home so she is always tired.

How are you doing?
I have the same case like you

https://cancercompass.com/message-board/message/all,5254,23.htm?mid=677683#677683
I recommend to you to open this link ..you will found many cases like us …wish you the best

@hamada

How are you doing?
I have the same case like you

https://cancercompass.com/message-board/message/all,5254,23.htm?mid=677683#677683
I recommend to you to open this link ..you will found many cases like us …wish you the best

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Hi @hamada, welcome to Connect. We look forward to getting to know a bit more about you. What treatments did you have for Anaplastic Astroctyoma? How are you doing now?

Thanks everyone for your words of hope and sharing. I am done with radiation, and I am currently on 12 month cycle of 320 MG temadr. So far my MRI’s look good. My oncologist said I probably wouldn’t see any more noticeable changes on them as the majority is gone and not we are dealing with it on a molecular level. God Speed everyone

@kansastumor

Thanks everyone for your words of hope and sharing. I am done with radiation, and I am currently on 12 month cycle of 320 MG temadr. So far my MRI’s look good. My oncologist said I probably wouldn’t see any more noticeable changes on them as the majority is gone and not we are dealing with it on a molecular level. God Speed everyone

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So good to hear from you @kansastumor. How are the side effects on Temodar (temozolomide)? Are you tolerating it well?

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