Adult Brainstem Tumor Poll
Update: 8/23/99
 

Here’s the latest update info re the adult brainstem tumor poll results.  This poll is a "living document", constantly in flux.  If you would like to contribute, please email me at mailto:donarich@earthlink.net.  This information depends on interested people like yourself to make it work.

You will see a number of 10+ years survivors, let's have a round of applause.

All adults with brainstem tumor (in the pons, medulla, or midbrain), have you or your caregiver posted? We now have a total of 72 responses, male and female, internationally. SOME NEWS:  there is now an adult brainstem tumor mailing list, under the umbrella of the Big List (Braintmr) and if you are interested in becoming a member - the volume is not large - please let me know.

Please remember, if you are reading this, we are still alive and fighting.  The intention of this entire adult bsg poll is to simply prove how long some of us can continue to live despite the statistics. The statistics are dreadful for brainstem tumors; but partially because data is so slim.  This information has been in the gathering process since September of 1998 and continues to be gathered with your help.

(We dread making any edits to this report involving loss - but please do advise  if such information comes to light. Out of deepest respect for those of us who have gone on ahead, please see the mortality data in the In Memoriam section.  If you know of one of us who has passed on, please post me.)
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You may find this easier to assimilate if you print it.

Please note the years of survival.  A little simple math will show you that these brainstem tumors are not always so quickly lethal.  Yes, Virginia, there is hope.
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72 TOTAL: 47 females, 25 males

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47 FEMALES

Age at Diagnosis    Year of Diagnosis                                  City/State or Country

31 '89 Ft.Lauderdale,FL
42 '97 Ft.Myers, FL
49 '98
29 '95 Rochester, NY
29 '97
34 '97 W.Hartford, CT
47 '94 Austin,TX
42 '98
n/a '92
15 '97 U.S.
54 '98 U.S.
64 '97 U.S.
15 '88 U.S.
63 '97 U.S.
17 '94 U.S.
28 '94 Lorain,OH
43 '86 Metarie, LA
43 '96 U.S.
25 '98 Toronto, Canada
12 '89 U.S.
26 '98 U.S.
26 '98 Orlando, FL
25 '89 Miami, FL
n/a '95 U.S.
n/a '99 U.S.
45 '93 U.S.
33 '96 U.S.
42 '97 U.S.
28 '98 U.S.
47 '92 Norway
30 '96
45 '94 Marion, NC
48 '98 El Dorado, AR
23 '93 U.S.
38 '97 Los Angeles, CA
25 '96 Hong Kong
40 '92 Pt. Jervis, NY
54 '98 Indianapolis, IN
30  '97 Battle Creek, MI
37 '96 Marion, IA
42 '98 Denver, CO
56 '98 Overland Pk, KS
29 '99 Melbourne, Australia
18 '79 Austin, TX
26 '87 Bowie, MD
40 '98

 
 

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25 MALES
 
 

Age at Diagnosis    Year of Diagnosis                      City/State or Country 

49 '98 Billings, MT
 3  '82 Chicago, IL
41 '91 Albuquerque NM
28 '98 U.S.
48 '98 Minneapolis, MN 
56 '95 U.S.
33 '91 Nanuet, NY
19 '94 U.S.
39 '94 Perth, Australia
21 '95 Indiana
46 '96 U.S.
67 '97 Vacaville, CA
31 '88
29 '93
27 '97 St. Paul, MN
34 '97 U.S.
38 '99 Sydney, AU
60 '99 Narromine, AU
31 '98 Roshold, WI
26 '98 U.S.
32 '98 Arizona
39 '99
32 '98 U.S.
27 '92 Houston, TX
48 '90 Angels Camp, CA

 

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IN MEMORIAM:

Age at Diagnosis/Yr Diagnosed/YrDeceased /City-State-Country                          Name

22 '96 '99 Holland Jeroen van der Erf
n/a '96 '99 U.S. Kevin Brooks
48 '98 '99 Middleton, WI George Larscheid
14 '90 '99 U.K. Paul Walker
19 '98 '99 Hong Kong Jaime Leung Chi Mei
37 '98 '99 U.S Autumn Hoeschen
39 '98 '99 U.S. Mike Garcia
23 '98 '99 U.S. Amy Poore
55 '98 '99 Belgium Francois Cauberghs
69 '98 '99 Yakima, WA Paul Belzer

 

Responses come from all over the world: Belgium, Hong Kong, Australia, British Isles, Germany, Holland, Brazil, China, France, Costa Rica, Brazil, Italy, Norway, Spain, Switzerland, etc.

Thanks, everyone. All comments are welcome. If you cannot recognize yourself or your loved one on this list, then I don't have your information, at least I don't have it correctly: name, gender, age at diagnosis, and year of dx.

***Also, separately, we are requested as part of fundraising campaign for Duke University Brain Tumor Center to provide city/state or city/country information if you would not object.  Please consider sending this data, on behalf of all bt patients. Funding means research, means more chance at real cure. There is strength in numbers.   Please.

Special thanks to:

All inquiries and postings are welcome.

Dona Ross, Fort Myers, FL, diagnosed 7/97 at age 42, pilocytic astrocytoma (pons, medulla, 4th ventricle, cerebellum)
mailto:donarich@earthlink.net