Anaplastic Astrocytoma possibly turned GBM

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Anaplastic Astrocytoma possibly turned GBM

by Katie725 on Mon Dec 04, 2017 08:27 PM

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A while back, I posted on here about my husband's diagnosis of AA. It's in the left frontal lobe and effecting his ability to find words. For a year he was kicking butt at treatments and the tumor had shrink considerably. 3 weeks before I had our baby girl (June this year) he suddenly had relapse symptoms.

At first they thought radiation necrosis because of all the inflammation, then they said no it's starting to grow back. A second opinion came with the news that they think it's changed into glioblastoma. We started right away doing biweekly Avastin with nightly temodar, maximum amounts of Keppra, dexamethasone and cannabis oil.

In the first days after getting him on the meds it seemed like he had a dramatic improvement. Now he's declining again. He's having seizures in his face, having a very difficult time getting even off the couch, and speech is almost non-existent. This all just since September!

We have his next scan next week and I'm just a bundle of nerves. I know what the prognosis is for GBM, and I know I'm probably going to lose him. I'm having a horrible time trying to cope. I'm not really sure what the point is of this post other than reaching out to other people who get it.

Love and light to you all. I hate this disease.

Katie

RE: Anaplastic Astrocytoma possibly turned GBM

by modesta on Mon Dec 04, 2017 08:35 PM

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Katie, I get it - i am sooooo sorry - I wish I know what to say - prayer for you and yours

RE: Anaplastic Astrocytoma possibly turned GBM

by ottoh on Mon Dec 04, 2017 08:59 PM

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Katie,my wife has gone through two operations for GBM. We thought we were going to loose her as well. If your insurance will cover it, go to either MD Anderson, Duke University, Or UCSF. We have been to all three and it has been my experience that you need to go to the people who really know what they are dealing with. We are going in tomorrow for another MRI and I expect it will be a clear one. We found that the THC and the CBD oils really helped her to get off the Keppra and the Dex. There are many clinical trials you can enroll him in, you will just need to do a lot of reading to see if he qualifies. We were enrolled in the CVR trial at MD Anderson where they geneticlly modified her T cells. She has been clear for the last year and a half and we always keep our fingers crossed. You might just try upping the dose of THC and CBD to help him with all the symptoms. Don't give up!!! More people are suriving this than they tell you! All the best to you. May God guide you and heal your husband! Aloha

RE: Anaplastic Astrocytoma possibly turned GBM

by nanxyyz on Tue Dec 05, 2017 06:24 PM

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I'm so sorry Katie, there aren't words that will make your stress go away. But I send postive vibes to you all. My mother fought stage 3 AA for 13 years, last year it unfortunately progressed to GBM. We had her in trials and similar medications, tumor shrinking and eventually started growing again. The last months we tried was Avastin, but it did not work. We lost her October 31st, 2017. It happened so fast, and it's been difficult to accept. There are people out there that have outlived the statistics, and I hope his case is one of them. 

Best wishes,

Nancy

RE: Anaplastic Astrocytoma possibly turned GBM

by ksavage523 on Fri Dec 08, 2017 02:34 AM

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The statistics are not what the Dr’s tell you, they are getting better every year. The data on GBM’s is 5-7 years old and that is what they have to go by. Like others have said, if your insurance covers it go to a top research hospital. I went to Columbia 7 years ago with a stare 4 glioblastoma which a local hospital told me was inoperable and they removed 98% of it and I am still cancer free ( after radiation and 2 years of tenodar). Know that God Is the only one who truly heals and gives the Dr’s there knowledge. My prayers are with you and your family. You may also want to read this article: https://www.chrisbeatcancer.com/wp-content/uploads/2013/01/A God Bless

RE: Anaplastic Astrocytoma possibly turned GBM

by dibari22 on Tue Dec 12, 2017 11:57 AM

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On Dec 04, 2017 8:59 PM ottoh wrote:

Katie,my wife has gone through two operations for GBM. We thought we were going to loose her as well. If your insurance will cover it, go to either MD Anderson, Duke University, Or UCSF. We have been to all three and it has been my experience that you need to go to the people who really know what they are dealing with. We are going in tomorrow for another MRI and I expect it will be a clear one. We found that the THC and the CBD oils really helped her to get off the Keppra and the Dex. There are many clinical trials you can enroll him in, you will just need to do a lot of reading to see if he qualifies. We were enrolled in the CVR trial at MD Anderson where they geneticlly modified her T cells. She has been clear for the last year and a half and we always keep our fingers crossed. You might just try upping the dose of THC and CBD to help him with all the symptoms. Don't give up!!! More people are suriving this than they tell you! All the best to you. May God guide you and heal your husband! Aloha

I agree with @ottoh here. Get to a to facility ASAP. Mayo Clinic, UCLA, UCSF, MD Anderson... I'm biased, but I suggest Mayo in Rochester.

Get to experts at the very top of the field.

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