WOW THIS IS AMAZING  THANKS A BUNCH TO MY COMPUTER ANGELS WHO WATCH OVER
ME....
 
 I just saw this 2000 or 2001 picture, of some of us meningimates enjoying
ourselves at Brain Tumor Awareness Week in Washington, DC ,  somehow it just
popped right up in my "To and From Subject box" on the top of my current
sandostatin message for you BOB in a thing called a picture Shoebox?   I
don't know where it came from, where it went now or how it happened....lol

Now its gone after I picked and only got to click two pictures.   i hope they
both come through to you all below

   Its me, Anne McGinnis Breen on the left in my serious but stylish  "gray
matters" pants suit, lolol
with Delia Camacho from NYC in the middle in her gorgeous "big hair" wig, the
one that made her so famous when she tore it off her head with one hand in
Senator Arlen Spectors' (R PENN) doctors office to show the bald parts of her
scalp and her multiple surgical scars of so called "harmless" meningioma
treatments for the past twenty years from age 19 to 41 to the resident
neurosurgeon doc from the Cleveland Clinic who was there for the year in
Washington on rotation to get a taste of the washington politics of our major
health care issues and to watch over Sen Arlen Spector, a meningioma survivor
who we never did get to meet that time with Lloyd Morgan  and I read Arlen's
case has advanced to some regular type lymphoma cancer now   BOY O BOY
  it seemed like one of the best perks I could imagine of being in high
political office, he had his own personal neurosurgeon on staff right in his own
Washngton DC office with our tax money.....even made me start to think about
running for office myself, this was already  after my second surgery   
lol       and Andrea Defeo from Connecticut is on the other side in a
white jacket outside a restaurant front door in Georgetown where I think we ate
that night with Cindi taking the picture of us three
together                                    \
           



View full size




Dear Bob,
Boy O boy, I remember your name hon,  you have had Gamma Knife and two other
treatments of SRS a radiosurgery type of radiation and it still came back.  
that is brain radiation three times in ten years hon...whoa   is that past
your cummulative lifetime radiation limit yet? How many rads so far?  How is
your own hair doing BOB?  Thanks again for including a detailed medical time
line hon, it really helps alot to sort the true bt survivors from the salepeople
selling vitamins and/or food products on here...





View full size

Here we are again just across the river in a chinese restaurant in Arlington,
starting on the left, Delia Camacho, Anne McGinnis Breen, Cindi Rixey Scott and
Andrea Defeo wearing white on the right. That was so much fun!   I do hope
some of you will plan to go this year and keep on getting louder, cuz they never
seem to listen to me about Mifperistne at all.

  That year Hillary Clinton made a surprize unadvertised visit and spoke about
our ongoing health care needs for a chronic condition after we retire or no
longer can work at BTAWeek at our NABTA luncheon on Capitol Hill.  She was
great then, and she still knows what she is talking about for our health care
options, even if you don't really like her personality style, she is so serious
and directly to the point all the time, just like me, lol     


   
 BOB I Love ya a bunch but what about asking your doctors to try avastin or
mifepristone" or some other more standard whole brain chemotherapy now?   Is
that what sandostatin is like? OUCH?   one of the injected alpha 2 interferons
or something?  Big shots monthly of Lupron hormones always kept my Dads PSA
down low and helped him fight his prostate cancer successfully for many years
without radiation or surgery, before the multiple myloma (Bone and Blood cancer)
and other strong chemo drugs finally got to him at the end, he was 87   

gbyay   Anne Breen

-----Original Message-----
From: Bob Weldon <rweldon@...>
To: Meningioma@...
Sent: Mon, 18 Feb 2008 7:12 am
Subject: sandostatin



Has anyone been on a trial of Sandostatin.........monthly intramuscular
injection, to stop recurrence?????????????  I am starting monthly injections
this week.

 

Bob

 

PS:  Am I the only guy in this group????????????????  My mother wanted a
girl, and I keep getting things that are more common to females!!!!

 


1999 - Parasagittal meningioma, fist sized, resected at Columbia Presbyterian
MC,  NYC (Dr. Robert Goodman)

2001 - regrowth and new growth resections (Dr. Robert Goodman, CPMC)

2001 - Gamma Knife - at Columbia Pres. NYC (Dr. Robert Goodman & Dr. S.
Issacson)

2003 - new growth and regrowth resections - 2003 at MUSC in Charleston, SC (Dr.
Stephen Haines)

2003 - Radiosurgery (SRS) and chemo (Hydrea) at MUSC (Drs. Jenrette and Tremont)

2006 - surgery for recurring meningiomas (Dr. Patel, MUSC)

2006 - SRS  for other small sites  + Hydrea started again  (Dr. Jenrette &
Dr. Giglio)

2007 – MRI shows increase in one M - Hydrea increased

2007 – some growth in 2 of 4 recurring tumors – possible surgery or Gleevec

2008 – Jan - Gleevec stopped due to rash

2008 – Jan. – starting monthly injection of Sandostatin to try to stop
recurrence

 

 

Also have Multiple Sclerosis (diagnosed 1986)


 

"Opportunity Always Lies Ahead"

 


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