Comments. If you answered "OTHER" to any questions, explain here.

4. Patient is my brother.
7. I'd love to see the results of your survey when you complete it!
12. My son died at age 11 - 9 months after diagnosis. To this day - 6 months later - we still haven't received a return phone call from his main doctor.
15. I will be starting a non-profit to provide goods, services and support to parents who have to live in the hospital with children who have BT's or other brain traumas. Contact me for more info: henry@aatcmn.com
24. The Musella Foundation and Virtual Trial offer a safe realistic exchange that is monitored appropriately but not too much!
30. I would very much like to find a real world support group, but the closest one is over 1 hr away in the evening rush hour traffic.
31. N/A
33. not applicable
35. In # 23, I was not sure who "helpful" was directed at. For my husband or other participants as I mostly lurk and only very seldom respond.
45. none
46. I havent participated in any groups, online or real world. I research multiple sources to confirm or discredit information I find online. I believe my Dr. truly knows the best methods, treatments and practices and consult openly with any and all questions and concerns. I am fully answered and satisfied with the answers given and long term plans.
52. I'm troubled by the lack of patient participation in the on-line support groups. I hope to find a way to bring more patients back into the ranks of participators in these online forums. In my opinion patients have stopped participating because they view these patient support groups as over-run by grieving care-givers and former caregivers who are preoccupied with death and dying. What I need as a patient is support in getting back to the best life I can live. I don't want to deal with people who can't get over the fact that everyone has a terminal condition -- called ""life." I don't think other patients want to deal with that attitude either. What is the solution? I don't know.
56. Without the online support group my father would not have had the hope nor the information to battle his tumour and wouldn't have survived 16 months. Our local hospital was refusing him both radiation and chemo in favor of Quality of Life for 3 months. He wanted to fight and the knowledge from this online group as well as the support kept us going and informed.
57. On the first page, our type of tumor isn't exactly listed. My husband was diagnosed from an MRI with a brain stem glioma. Few months later, he needed surgery after radiation, and the biopsy path report called it an "astrocytoma with pilocytic qualities".
73. Questio 33. Did not answer "ohters", but is is difficult to give a general answer: some books are trsutful, others stink. As you get informad by reliable sources, and discuss the experiencie of other people, you get a sense of what you shpuld not listen or read. Found littele in magazines, and newspapers are very littel reliable (you get the news, but you have to research on it, because they most often get the story wrong.
79. Thanks!
84. I think that nearly every one benefits in a support group. Certainly with the greater availability of computers today, the online groups are more convenient; one can chat from home, no sitter, no travel, etc. Some of my closest friends are those I met in our support group, 17 years ago. It does take an effort to reach out to newly diagnosed and another effort to participate on their part. I was president of a real world support group, run by parents. We handed out info to newly diagnosed parents that included booklets from ABTA, and other reliable sources and a pamphlet and newsletter from our group. Sad to say, after 10 years no one had the time to take over the daily runnings of the group. I believe the computer has had an effect, but hopefully the online groups provide the comraderie.
88. n/a
96. Al Musella's site is excellent. I have visited it frequently; have met Al at various meetings. The Central NJ support group is a great vehicle for expression and sharing.
108. Family ethnicity is interracial (Blk/Wht) Diagnosis: 1994 - 2003 Oligodendroglioma 2003 - 2005 Anaplastic Astrocytoma 2005 - 2006 GBM
109. Unfortunately doctors do not listen & some never find out about support groups even when you ask "BEG" for some help.
117. My boyfriend was diagnosed with GBM grade IV in October 2005. We live together but file separate tax returns. At the time of diagnosis, he was the sole income provider while I was in graduate school. Within 8 months after diagnosis he was laid off from his job as a computer programmer. He is still on a monthly chemo schedule. He is now on medicaid and collecting social security of less than $10,000 per year. I completed graduate school and work for a pharmaceutical company and earn $75,000 per year and take care of all of the expenses for our family.
122. I am a 3 year survivor of a brainstem ependymoma. My wife died 9 months ago of a Glioblastoma. She was taking care of me when she was diagnosed. The roles reversed and I became her caregiver until she passed away. It's been three years of absolute hell.
125. One clarification: In the first page, my age (55) is a current age and not how old I was at the time of diagnosis. Similarly, my doctor's age was estimated at that time (almost twelve years ago). Good luck with your project!
128. it would be nice to moniter the effects of particular trials as they accrue. One way the online groups help is talking about promising therapys like cpt-11/avastin. They are able to prod there doc. into at least looking into it.
134. My sister was my caregiver, actually she does continue to be in alot of ways. Any online websites were visited by her. I trusted her to do it, because she is such a great sister and her husband is also so wonderful. They have been awesome to me and my children.
136. my mom actually passed away two years ago in 05 but there was no where to indicate
137. I've never brought up anything online to my doctor. So #41 is N/A.I don't have anything else to add.
159. This survey is too USA-centric. The ethnicity list is USA-centric. The gross income questions are vague - are you talking American dollar? Do we global inhabitants have to convert our currency to USD$ equivalent - now let me see, what were the currency conversion rates back in 1996... ? I appreciate that by sheer population size the USA has the most BT's, and probably also the most funding for BT research, but I can't help feeling like a leper on some US sites! Think Global, Folks... Cheers, Andrew Cool Adelaide, South Australia andrew@cool.id.au Oligo Astrocytoma Gr2, dx May 96, sx Jun 96, Rad'n Jul-Aug 96. Drugs : Depakoke 1000mg dly
160. White South African
162. for me (somewhat pragmatic), online sites help to inform and give me some hope. (misery loves company), but the facts ive gained, via others experiences...are mostly scary. a dx of gbm is truly - a fate worse than death.
166. Im Muslim, form Macedonia (South-East Europe)
168. Multie Racial A.A., A.I., German, Porguse
173. You gotta use humor! It's a necessity! Thanks.
174. I want to thank Al Musella for providing these resources
176. I have changed neuro oncologists as the first one was not open to any of the support group ideas (using melatonin and other supplements)
179. I wish there was a sight just for males with with a BT. Even when an email message requests for responses only from rom males, guess who responds overwhelmingly - female care givers. I can't be the only male BT patient who visits the boards. It would be nice to chat with other male BT patients about common issue without all the know-it-all females chimming in.
181. not applicable
184. I like them, Thank you for the work you do with them. We need more public awareness of brain tumors, I see and hear them all over. I know many in my small little 30 mile area where I live. You see all the other famous kinds. Help.
189. Type of tumor = skull base chordoma. Great survey, if you publish online, please klet me know:L uswoods5@gmail.com. Thanks.
190. I look at the list as a double edge sword. Learned so much about treatments, doctors, medications, and many aspects of the disease. Communicated with some of thye most amazing caring individuals. On the other side have also been exposed to the havoc these tumors create on the lives of the people who suffer from bt's, the treatments involved to keep them in check and the families who are so adversly affected.
191. For the ages, I wasnt sure if you meant now or at diagnosis. I put in our ages at diagnosis because my husband passed away last May from his tumor.
205. Thank you Virtual Trials for being our main resource. You are a significant positive piece of the journey and puzzle. It amazes me the effort that you put into your site - there is not doubt your heart is in a wonderful place. Peter Narbus
207. none
216. I didnt even know there was a real world supprt group this was not something I was offered. Actually I have only now been offered counselling by my GP after all my treatment has finished and I am still feeling very fatigued.
218. n/a
224. I was/am so very happy to have had the resources of medical professionals easily accessed. Like most people, I was shocked at the diagnosis and most people I knew either knew of terrible stories or brushed me off.
225. The effects of my husband tumor has totally changed our life. We are going through a very rough period and do not have a support system. We have only each other and a few friends.
227. All of this has to do with treatment related information. One of the most important types of information has to do with survivor stories; how other survivors are dealing with ther situations, how your situation compages with others and what people do to become healed as well as cured.Also there is relatively little opportunity to develop ongoing shared critical perspectives concerning insurance covergae, drug costs, and the like.
229. I would really like to add a little humor now and then. it helps you heal and it helps you laugh!
232. N/A