Anaplastic Astrocytoma

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Anaplastic Astrocytoma

by helpmysis on Mon Aug 24, 2015 02:38 PM

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My identical twin sister had surgery to remove a brain tumour on August 11, 2015. They were able to remove 90% of it, but there are still some "fingers" left. After pathology came back we were informed it was a grade 3 anaplastic astrocytoma. She will be having radiation in 3 weeks. The plan is to do the radiation and then a wait and see approach with MRI's every 2 months. If the tumour starts to grow chemotherapy will start.

She has the option for a clinical trail where they adiminister chemotherapy at the same time as radiation therapy to "hit the cancer hard".

We wondering if anyone has had experience with the use of both chemo and radiation at the same time? Benefits and disadvantages?

Please if anyone can tell us of their course of treatment and the success of it and pros and cons.

If there are any other options for treatment?

Our family is brand new in this new scary world of brain cancer. The prognosis of 2-3 years is extremly disappointing and scary. But we have read on these message boards that this prognosis is much better in others.

Please help, any information would be wonderful.

Thanks!!

RE: Anaplastic Astrocytoma

by Michaeljf on Mon Aug 24, 2015 06:59 PM

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On Aug 24, 2015 2:38 PM helpmysis wrote:

My identical twin sister had surgery to remove a brain tumour on August 11, 2015. They were able to remove 90% of it, but there are still some "fingers" left. After pathology came back we were informed it was a grade 3 anaplastic astrocytoma. She will be having radiation in 3 weeks. The plan is to do the radiation and then a wait and see approach with MRI's every 2 months. If the tumour starts to grow chemotherapy will start.

She has the option for a clinical trail where they adiminister chemotherapy at the same time as radiation therapy to "hit the cancer hard".

We wondering if anyone has had experience with the use of both chemo and radiation at the same time? Benefits and disadvantages?

Please if anyone can tell us of their course of treatment and the success of it and pros and cons.

If there are any other options for treatment?

Our family is brand new in this new scary world of brain cancer. The prognosis of 2-3 years is extremly disappointing and scary. But we have read on these message boards that this prognosis is much better in others.

Please help, any information would be wonderful.

Thanks!!

My beautiful wife diagnosed and operated on for Grade3 AA in June 2015. They also removed 90% of the tumor. She is 42 years old, and in great health. She is currently on radiation and chemotherapy treatment (temador). She is finishing up her 6th week of treatment. I don't understand why both in combination are a "clinical" trial, and seems to be the standard of care for grade 3AABelieve me, all of this is new to me.

My wife has the MGMT gene, which is a positive for temador treatment, something no one told me, until we discovered it ourselves. So scary. Ignore the "google" and statistics, and help your sister be one of the survivors. My wife is doing well through the treatment, and we hope for the best, when we do a follow up MRI.

So tough, you are not alone.

RE: Anaplastic Astrocytoma

by Dodgerblue on Tue Aug 25, 2015 02:00 AM

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I was dx 12/8/13 4cm x6cm tumor in rt Parietal lobe, craniotomy 1/8/14 all visible tumor removed, AA3 pathology results 1/24/14.  Early Feburary started 6 weeks radiation IMRT w/ concurrent low level chemotherapy.  Month off chemo following end of radiation.  6 months of of higher dose chemotherapy 5 days on/ 23 days off schedule.  My understanding is that that is standard treatment of newly diagnosed patients.  Wait and watch is more common for grade 2 astrocytomas.  I suggest seeking treatment at a highly regarded brain tumor center.  I live in Ct., but go to Dana Farber in Boston for their specialty in Neuro-oncology.  I was 38 when first DX, and I'm now 20 months in with no recurrence.  I have have met many grade 3 and GBM(grade 4) survivors who have beat the odds and are long term survivors.  Any questions feel free to message me.  The beginning is scary, but things can get back to normal, somewhat.  Best of luck,,

Dodger

RE: Anaplastic Astrocytoma

by Michaeljf on Tue Aug 25, 2015 02:38 AM

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Dodgerblue,

Thank you for taking the time to inspire the rest of us.

RE: Anaplastic Astrocytoma

by Bee_Rich on Wed Aug 26, 2015 07:22 PM

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I had concurrent temodar & radiation for my diffuse, infiltrative AA. While not so pleasant, I would recommend it, if it might give better results. My tumor shrank some and has been mostly stable since I finished 12mos. of temodar in Jan 2014. I think my biggest issue has been the long term fx of tumor necrotic tissue. Mostly balance, limb strength and some sensitivity to sound. NO says I could be good for many years, or not. no way to predict. I do try to stay on a ketogenic diet and exercise is important. Currently hoping to get back to taekwando, after a fall, concussion took me out some weeks ago.

I'll take that. :-)

RE: Anaplastic Astrocytoma

by Bee_Rich on Wed Aug 26, 2015 07:27 PM

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forgot to mention the fx of anti-seizures are significant too. Very fatiguing, afternoon naps are very helpful. I take Keppra & Vimpat plus other drugs that wipe me out. Again I'll take the side fx, if they keep me alive and mostly functional! keep positive and laugh along with the crying.

RE: Anaplastic Astrocytoma

by Michaeljf on Wed Aug 26, 2015 07:34 PM

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On Aug 26, 2015 7:27 PM Bee_Rich wrote:

forgot to mention the fx of anti-seizures are significant too. Very fatiguing, afternoon naps are very helpful. I take Keppra & Vimpat plus other drugs that wipe me out. Again I'll take the side fx, if they keep me alive and mostly functional! keep positive and laugh along with the crying.

Bee Rich, Thank you for your reply. All information is helpful.Fight on! Live on!

RE: Anaplastic Astrocytoma

by helpmysis on Wed Aug 26, 2015 07:49 PM

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On Aug 26, 2015 7:27 PM Bee_Rich wrote:

forgot to mention the fx of anti-seizures are significant too. Very fatiguing, afternoon naps are very helpful. I take Keppra & Vimpat plus other drugs that wipe me out. Again I'll take the side fx, if they keep me alive and mostly functional! keep positive and laugh along with the crying.

Thank-you very much for your input. We are looking into the Dana-Farber cancer intitute.

Thank-you, for your support we appriciate it:)

RE: Anaplastic Astrocytoma

by helpmysis on Wed Aug 26, 2015 07:58 PM

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On Aug 25, 2015 2:00 AM Dodgerblue wrote:

I was dx 12/8/13 4cm x6cm tumor in rt Parietal lobe, craniotomy 1/8/14 all visible tumor removed, AA3 pathology results 1/24/14.  Early Feburary started 6 weeks radiation IMRT w/ concurrent low level chemotherapy.  Month off chemo following end of radiation.  6 months of of higher dose chemotherapy 5 days on/ 23 days off schedule.  My understanding is that that is standard treatment of newly diagnosed patients.  Wait and watch is more common for grade 2 astrocytomas.  I suggest seeking treatment at a highly regarded brain tumor center.  I live in Ct., but go to Dana Farber in Boston for their specialty in Neuro-oncology.  I was 38 when first DX, and I'm now 20 months in with no recurrence.  I have have met many grade 3 and GBM(grade 4) survivors who have beat the odds and are long term survivors.  Any questions feel free to message me.  The beginning is scary, but things can get back to normal, somewhat.  Best of luck,,

Dodger

Thank-you for your reply we are looking into the Dana-Farber cancer institute for more information.

Thank-you for your support:)

RE: Anaplastic Astrocytoma

by jazzkool on Wed Aug 26, 2015 08:44 PM

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My 48 year old son has somewhere in between a Stage II and Stage III anaplastic Astrocytoma.   First operation was in June 2008 and second was June 2012.  Tumor is regrowing and MDs want him to start on radiation, but the tumor is very near the brain area that controls communication skills and he is afraid to start radation at Hopkins.  He is also being seen at NIH.  What I am trying to get him to do right now is STAY on the Ketogenic diet and take the supplements and drugs that Ben Williams has taken.  (Ben is a 20 year survivor of GBM.)   He is taking some of Ben's supplements but none of the drugs.  (BTW, Ben Williams puts out an annual summary on the net of supplements and drugs that are currently helpful in retarding tumor growth and he has written a book on his experience in beating GBM). 

I recommend that you check Ben out on the net and buy his book.  Also, Dr. Thomas Seyfried, a professor at Boston College, is a strong advocate of going on the ketogenic diet to stop the return of the tumor.  His video on the subject is on the internet.  He is strongly opposed to radiation treatments.

As you can note, my son has lived a lot longer than he was expected to, so I would be skeptical of a life expectancy of 2 to 3 years, even though there is a Stage III rather than Stage 2 tumor involved.  We have classified this as a Stage II and 1/2 because of the blood work after the second operation that put his tumor in a more dangerous category. 

Hope this is helpful.

Dick

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