How long did you survive gbm?

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How long did you survive gbm?

by pooliepoo on Sun Jul 28, 2013 05:31 PM

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At the six month mark and have reacurrance and am on avastin. Have random headaches itching from the heat here in oregon . I became allergic to temodar and now wonder what options I have to kick this crap in the you know what any thoughts ?

RE: How long did you survive gbm?

by SarahGrey on Mon Jul 29, 2013 01:52 AM

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hey poolie,

so sorry to hear...  :(   what about the novocure device?  is basically just "a helmet" with electrodes and magnets.  you don't eat or injest anything and it's supposed to be as effective against gbm as chemos.  just sucks because you have to keep your head clean shaven and wear the device most of the day but...  hey, if it helps...

all the best, sarah

(PS - my husband survived 13 months post diagnosis)

RE: How long did you survive gbm?

by Bulley1 on Mon Jul 29, 2013 02:52 PM

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Don't give up. We're going on 3 years here. Dan has been on Avastin twice. Currently no treatment. MRI's every two months. Feeling blessed. Pam

RE: How long did you survive gbm?

by kat54 on Mon Jul 29, 2013 03:42 PM

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20 years here. no chemo, two surgeries 1993 & 1995 , radiation 6 wks in 1993 and stereotactic radiosurgery 1993.

pathology slides verified johns hopkins. m d anderson, dana farber Boston and Brigham & women's Boston. 

Many are surviving 10 or more years. my full story is under bios at yasg.com Kathleen Rhodes.

Prayers for a  successful treatment for you.  Kathleen

RE: How long did you survive gbm?

by jon4156 on Tue Jul 30, 2013 01:45 PM

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Do you know if the recurrence is operable?  The one thing that many long term survivors seem to have in common is multiple surgeries to remove the tumor.  While we can't trivialize the risks of surgery, resection is the best defense.  Avastin is typically the next step if surgery is not possible or if you decide against it.

Novocure is approved for recurrence and will help control the cancer since it acts by disrupting cellular division of the cancer cells.  It is burdensome in the context that it requires constantly shaving your head and wearing the device at least 20 hours per day.  See first link below.

Finally, you might look into the poliovirus vaccine clinical trial that is going on at Duke university if you elect to have surgery.  See second link below.  It's only at Phase-1 and I think you have to be careful with such trials since you are certainly a guinea pig, but this one appears to be having very good results.

http://www.novottftherapy.com

http://clinicaltrials.gov/ct2/show/NCT01491893

 

RE: How long did you survive gbm?

by Bruce_Edward on Thu Aug 01, 2013 09:38 PM

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Hi, My daughter, now 25 is at the 5 1/2 year mark and is doing well! She's enjoying life and planning her wedding! She has the Lord's favor in her healing!!!

Bruce

RE: How long did you survive gbm?

by psbrown on Fri Aug 02, 2013 09:46 AM

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wow!! very exciting!! thanks for the encouraging words,  feels so scary sometimes

RE: How long did you survive gbm?

by jeg983 on Fri Aug 02, 2013 09:56 PM

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Dear Poolepoo

yesterday was 5 years.

My Brain Cancer was diagnosedAugust 1, 2008. At the same time I was diagnosed with a malignant melanoma on my leg.

There was initial concern that the melanoma on my leg had metastasized to the brain. So brain surgery was held until determination of the spread of the melanoma.

Leg and groin melanoma redacted August, 2008, lymph nodes showed no sign of cancer.

Brain redaction late September 2008. The Surgeon said "we got got all that they could see. 

Underwent Radiation and oral chemo (themodar) September 2008 to Nov 08

The MRI in Dec 08 showed anexplosive growthof the GBM and was told that I had only months, not years.

At that time Avastin was still in trials and was not FDA approved until late spring of 2009.  By that time I had been on Avastin and Carboplatin since my first Chemo, by IV -Dec 17,2008.  I received carbo every 4 weeks and Avastin every two weeks.

I was told that since the FDA had not approved Avastin for GBM that since my prognosis was so poor that Greentech did not charge, at least initially.

They tell me that the chemo side effects are not cumulative but I don't believe it.  The side effects of the Carbo really bothered me, additionally the gbm had not shown any growth for over a year.  With the approval of my oncologist the Carbo was stopped July of 2010.  The Avastin was continued every other week until June 2011 when it as agreed that the BC was in remission.  (You know what remission, it's probably still there but we can't see it.)

The most recent MRI shows no growth. (I will continue getting MRI's every other month.)

I write this in late August 2011. 

 I am slowly coming out of the cloud.  Every week I seem to have a little more energy, and more importantly more enthusiasm. I am still having trpuble with a"lack of disipline, to do the things I should do.


The best of everything to you and yours.  God Bless.

John Ed

 

Cancer diagnosedAugust 1, 2008-Two primary cancers

         GBM in Brain

         malignant melanoma on leg

 

Leg and groin redacted August, 2008, Nodes were clear.

 

There was initial concern that the melanoma on my leg had metastasized to the brain.

 

Brain redaction September____2008

 

Radiation and oral chemo (themodar) September 2008 to Nov 08

 

First Chemo by IV -Dec 17, 2008Carboplatin and Avastin

 

last carboJuly 14, 2010

 

Last avastinJune 15, 2011

 

There were 66 doses of Avastin

There were 16 doses of carboplatin

 

Avastin was injected every other week. (twice a month)

Carbo was injected once per month

MRI's, once every two months.

Blood and urine tests, once a month

RE: How long did you survive gbm?

by ourVictory on Mon Sep 02, 2013 04:49 PM

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3 years this week since being diagnosed 9/2010 and still under standard treatment plus some out of the hospital treatments that might be not contraindicated by my Neuro- Oncologist-NO- whom I make aware of most of them like the blue scorpion venom, guanabana among others...

RE: How long did you survive gbm?

by Glitzy12944 on Mon Sep 02, 2013 07:08 PM

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My husband is currently at 14 months.  He had a recurrance in January and started the Avastin but the tumor continued to grow with the Temodar and Avastin.  We stopped treatment in May and he's been on hospice the past three months.

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