Adult Brainstem Glioma Poll
Update: 4/30/99
 

Heres the latest update info re the adult bsg poll results.  As you know, this poll is a "living document", constantly in flux.   You will see a number of 10+ years survivors, let's have a round of applause.

All adults with brainstem glioma (tumor in the pons, medulla, or midbrain), have you or your caregiver posted? We now have a total of 64 responses, male and female. For the very first time, in this one month interim, we lost more people than have been newly diagnosed. Should we be happy or sad??

Please remember, if you are reading this, we are still alive and fighting and this info only reflects mortality data in the In Memoriam section, not in the statistics for life. 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 need also to acknowledge our losses, and since the last update Autumn Hoeschen, Mike Garcia and Amy Poore are remembered as survivors who have succumbed to the beast we fight daily. We dread making any edits to this report involving loss - but please do advise me if such information comes to light.
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.
*************************************************************

64 TOTAL: 41 females, 23 males

**********
41 FEMALES
(age at diagnosis and year of diagnosis)

31 - '89
42 - '97
49 - '98
29 - '95
29 - 97

n/a- n/a
47 - '94
42 - '98
n/a -'92
n/a - n/a

15 - '87
54 - '98
64 - 97
15 - '88
63 - '97

17 - '94
29 - '94
43 - '86
43 - '96
25 - '98

12 -'89
26 - '98
26 - '98
25 - '88
n/a- 95

n/a- 99
45 93
33 96
42 97
28 98

47 92
30 96
45 94
48 98
23 93

54 98
38 97
25 96
40 92
54 98
30 97

*******************
23 MALES
(age at diagnosis and year of diagnosis)

31 84
41 - '91
28 - '98
n/a - n/a
69 98

56 - '95
33 91
39 98
19 '94
21 - '95

46 - '96
67 - '97
31 - '88
29 - '93
27 97

34  - '97
55 98
60 99
31 98
26 - 98

32 98
39 99
32 98
 
 

IN MEMORIAM:

22 - '96 99
n/a- 96 - 99
48 98 99
14 90 99
19 - '98 99
37 98 99
39 98 99
23 - '98 99

Responses come from all over the world: Belgium, Hong Kong, Australia, British Isles, Germany, Holland, Brazil, China, France, Costa Rica, Brazil, Italy, Iceland, Spain, 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.  It is my intention to update next time to include this data (city/state/country info).

Special thanks to:
 

All inquiries and postings are welcome.

Dona Ross, Fort Myers, FL, diagnosed 7/97 at age 42, pilocitic astrocytoma (pons, medulla, 4th ventricle, cerebellum)
E-mailto:donarich@earthlink.net or dona@braintrust.org