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Posts (8)

Dec 18, 2016 · Inoperable Brain Tumor in Brain Tumor

I think a second opinion is the smart and safe way to proceed. Depending on the location and the size of the mass there may be no safe way to resect the tumor but finding a good neurosurgeon and arranging to send him/her the MRI would provide you peace of mind that two specialists concur on the diagnosis.

My daughter is 34 years old and has had two surgeries to remove a 5.5cm mass from the left frontal lobe region. She had the initial chemo and radiation regimen and is about to start her 3rd monthly chemo treatment at 3x the dose she had during the post surgical treatments. This will last for 12-18 months. I hope your sister agrees to that second opinion soon but she will ultimately need to make that decision and everyone will need to accept her wishes and move forward. Best of luck!

Dec 16, 2016 · Inoperable Brain Tumor in Brain Tumor

Hello @spammy – I am also sorry to hear about your sister. My daughter was also diagnosed was AA about 6 months ago. We live in Denver and can recommend a very good neurosurgeon at University of Colorado Anschutz Medical Center but I am not sure where you are living? I also noticed that you stated the tumor was inoperable? Have you got a second opinion on the original diagnosis?

Sep 21, 2016 · Recently dx with Anaplastic Astroctyoma - was your treament successful in Brain Tumor

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.

Jul 22, 2016 · Anaplastic astrocytoma: Can anyone recommend a great neurosurgeon? in Brain Tumor

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.

Jul 22, 2016 · Recently dx with Anaplastic Astroctyoma - was your treament successful in Brain Tumor

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.

May 3, 2016 · Anaplastic astrocytoma: Can anyone recommend a great neurosurgeon? in Brain Tumor

Thank you for the response Trivon. I am searching for a neurosurgeon that only works on brain tumors not a neurosurgeon generalist. I am glad Dr. Levine was able to help you with your back though!

Thanks again!

May 2, 2016 · Anaplastic astrocytoma: Can anyone recommend a great neurosurgeon? in Brain Tumor

Thank you for the reply. I am sorry to hear you are going through the same thing we are right now. Her health care provider is Kaiser and we were hoping to get a referral outside Kaiser for the surgery but they denied our request today. I guess we are going to have to trust the surgeon will get as much of the tumor out without causing any damage to any important motor tracts. She is having open enrollment right now and she intends to select Blue Cross as her new provider starting July 1. Unfortunately she needs surgery ASAP and it’s currently scheduled for June 2. If she needs additional surgeries at least our options will be much greater starting July 1.

I hope your daughter is doing well!

Thanks again

May 2, 2016 · Anaplastic astrocytoma: Can anyone recommend a great neurosurgeon? in Brain Tumor

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!