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I_Promise's picture
Posts: 218
Joined: Aug 2011

I would like to start a thread about survival; I lost a great deal of online friends to brain cancer and I would like this thread to be a beacon of hope for the newly diagnosed. I remember when my sister was diagnosed I went into panic mode. My own life did not seem worth living. I was crying non stop. I refused to accept (I still do) this horrible diagnosis. My sister is my super hero.

I will start: my youngest sister at the age of 28 was diagnosed with AA3 in August 2011. She had two surgeries, radiation and chemotherapy. This spring she graduated from her PhD in Mathematics, found a great paying job a months ago. She travels, runs 5K every day, has a boyfriend. There are no signs of the monster except the patch of baldness where she sustained radiation.


I also know a facebook friend who got diagnosed with AA3 three years ago and got accepted to medical school. He also does not have any deficits and lives his life to the fullest.

Finally, a collegue of mine was diagnosed with AA2 more than five years ago. He still skies every week end during the winter, works full time, has two children and a wife.

Can you post your survival story/announcement?



BenLenBo's picture
Posts: 145
Joined: Feb 2012

I am a survivor, just finished another 3 month MRI, clean, and have been clean since September 2011.  I do have the deletions 1p19q,  6 weeks radiation and

Temdor, after 99 % removal of left frontal lobe.  Finished extensive  6 months of Temodor (at a higher dosage) July of 2012.  I have been cancer free and

remain a survivor.  Oncologist stated at last MRI, to consider myself cured.  My treating facilities are Roger Maris Cancer Center, Mayo and John Hopkins, who

have seen survivors 20 and 30 + years out.  I now begin 6 month MRI's for a few years and then yearly after, take no medications, and totally healthy.

I never had and deficits and live my life to the fullest.  I attribute my success to wonderful family support, fantastic Oncologists, great Neurosurgeons, and

the best medical facilities in the country.  I have a fantastic job, employer was 100% supportive, great friends to hang with, and the ability to do anything

I wish.

Prayers for all who are newly diagnoised and for those fighting brain tumors- keep FIGHTING!

Posts: 248
Joined: Apr 2011

I check yet his site often, hoping to read a post from ones that were here when I joined in 2010. My husband was DX with an Anaplastic Oliodendroglioma Grade 3. Surgery gross total resection, chemo,radiation. Doing ok now. Doctor appt coming up soon. His reports have been stable so far. I pray they woll continuer to be.

I_Promise's picture
Posts: 218
Joined: Aug 2011

I am glad you are both doing great!

all my love,



Mary N.
Posts: 100
Joined: Jun 2013

My large b cell diffuse non-hodgkins in my brain was diagnosed in Jan 2010.  I was given about three months, maybe a year.  This has now been 3 1/2 years.  I am driving, was working after 9 months, enjoy life, gardening and grandchildren.  I do have to keep on with my chemo Rituxan each month and high dose MTX every 4 months and an MRI before the high dose.  After about 9 months with very frequent chemo my tumors (one was gone the other no more activity).  I was very weak at first but have gotten stronger each year.  It is interesting how much there is an adjustment between hanging on with the thought that you might die at anytime and now where I feel really normal except for the days out for the chemo.  I must admit that my thinking about what is important has changed a great deal.  I don't take life or experiences for granted so am determined to live each day.  I feel God has blessed me greatly and my prayers and prayers from other have been very important.  I so love the identical twin boys born Sept 2010 who are now getting close to 3.  These grandsons are so precious because it was felt by the doc's I wouldn't see them.  Life is special and precious and if one looks for it there are wonderful surprises from a beautiful iris to a gorgeous sunset to unspeakable kindness given by others.  Blessings.

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