| # | Date Completed | 1 | 2 | 3 | 4 | 5 | 6a / 6b | 7 | 8 | 9 | 10 | 11 | 12 | 13 | 14 | 15 | 16 | 17 | 18 | 19 | 20 | 21 | 22 | 23 | 24 | 25 | 26 | 27 | 28 | 29 | 30 | 31 | 32 | 33 | 34 | 35 | 36 | 37 | 38 | 39 | 40 | 41 | 42 | 43 | 44 | 45 | 46 |
| 1 | 08/01/2007 | 11/03/1992 | Glioblastoma Multiforme | Relative | M | Married | 46/53 | 3 | 4 | 0 | USA | Suburban | 13 | 13 | 6 | 6 | 6 | Y | Y | N | N | 5 | 5 | 5 | 5 | 5 | 5 | 5 | 5 | 4 | 4 | 4 | 4 | 4 | 3 | Y | Y | N | Y | N | N | 3 | We found treatments that we would not have found otherwise - resulted in over 8 years of extended survival after being told nothing was available and patient would die in weeks. | no | |||
| 2 | 08/01/2007 | 05/27/2006 | Glioblastoma Multiforme | Child | F | Divorced | 44/74 | 1 | 3 | 0 | USA | City | 1 | 1 | 2 | 3 | 1 | Y | N | N | N | 4 | 0 | 4 | 0 | 4 | 5 | 0 | 4 | 4 | 0 | 3 | 4 | 3 | 3 | N | Y | N | Y | N | N | 1 | By sharing information with others going through the same thing, listening to their stories and what treatments have failed or succeeded for them. | Arguing about personal opinions | n/a | n/a | |
| 3 | 08/01/2007 | 04/13/2006 | Anaplastic Astrocytoma | Relative | F | Single | 32/35 | 1 | 4 | 0 | USA | Suburban | 1 | 1 | 4 | 5 | 3 | Y | N | N | N | 4 | 0 | 5 | 0 | 3 | 5 | 0 | 2 | 4 | 0 | 4 | 3 | 2 | 2 | Y | Y | N | Y | N | N | 2 | I allowed me to overcome the doom and gloom statistics found online and given by the doctors. They also allow me to plan for future treatments and to have more confidence in what the doctor's plan is. They also help you feel not so alone because many people do not understand the challenges facing brain tumor patients b/c they often look "normal." | Sometimes it's hard to filter out non-credible information. | N/A | N/A | Patient is my brother. |
| 4 | 08/01/2007 | 12/13/2006 | Glioblastoma Multiforme | Child | F | Married | 38/57 | 2 | 4 | 0 | USA | Rural | 5 | 5 | 4 | 6 | 3 | Y | N | N | N | 4 | 0 | 5 | 0 | 4 | 4 | 3 | 4 | 4 | 0 | 4 | 4 | 3 | 3 | N | Y | N | N | N | N | 3 | The online support groups that I joined after my Mom was diagnosed with GBM have been a lifeline for me--mentally and emotionally. The groups are available at any time of day or night, which is very important with a busy and erratic schedule of balancing work and family life. | No. My opinion is that everyone is entitled to their opinions and that we all make our own decisions. I don't let any conflict in the groups affect my use of the groups and their resources. | I have not joined any real world support groups due to time constraints. | I have not joined any real world support groups due to time constraints. | |
| 5 | 08/01/2007 | 01/29/1986 | Anaplastic Astrocytoma | Spouce | M | Married | 50/51 | 2 | 3 | 0 | USA | City | 2 | 2 | 1 | 2 | 2 | Y | Y | N | Y | 4 | 5 | 4 | 5 | 4 | 5 | 5 | 4 | 3 | 4 | 3 | 4 | 2 | 2 | N | N | Y | Y | N | N | 3 | People with similar experiences sharing info. Have learning from others experience and able to share my experience. | No - just know that there is a need to verify everything and see how it might apply to the special circumstances that happen in each situation. | People with similar experiences sharing info. Have learning from others experience and able to share my experience. Having been doing this for 20 years, sharing is a major benefit of participating. Very healing for me. | Nothing serious, as with life personalities don't always mesh well. | |
| 6 | 08/01/2007 | 03/21/2005 | Glioblastoma Multiforme | Spouce | M | Married | 65/59 | 2 | 4 | 0 | USA | City | 8 | 6 | 2 | 2 | 2 | Y | Y | N | N | 4 | 4 | 5 | 4 | 4 | 5 | 5 | 3 | 4 | 3 | 5 | 4 | 4 | 3 | N | Y | N | N | N | N | 2 | By knowing what treatments others are getting, I can feel more comfortable that the treatment plan prescribed by my doctor is current and mainstream. | There is an incredible amount of advocacy of CAM treatments by various posters. Makes me feel guilty that I, as the caregiver, am not doing all that should be done for my BT spouse. | They talk about real-world problems and how to deal with them using local services. Able to refer newly diagnosed to local sources of treatment expertise. Morale-boosting to physically see long-term suvivors that are doing well. | None, except it is distressing to have the group leader start a session by anouncing the passing of former attendess that we have gotten to know. | |
| 7 | 08/01/2007 | 12/05/2006 | Glioblastoma Multiforme | Spouce | F | Married | 55/55 | 1 | 4 | 0 | USA | Suburban | 9 | 6 | 3 | 3 | 1 | Y | N | N | N | 4 | 0 | 4 | 0 | 4 | 5 | 0 | 4 | 3 | 0 | 3 | 4 | 4 | 2 | Y | Y | N | Y | N | Y | 3 | Helps me to understand terminology, learned from experiences of others, helps me know what questions to ask, provides support with people in similar situation, the information and experiences on different protocols allows me to have meaningful participation in treatment decisions, different perspectives honored | I did have one off-group email that was offensive. | na | na | I'd love to see the results of your survey when you complete it! |
| 8 | 08/01/2007 | 01/23/2007 | Glioblastoma Multiforme | Spouce | F | Married | 47/54 | 1 | 3 | 0 | USA | City | 9 | 9 | 2 | 3 | 5 | Y | N | N | N | 5 | 0 | 5 | 0 | 4 | 5 | 4 | 4 | 4 | 0 | 5 | 5 | 3 | 1 | N | Y | N | N | N | N | 3 | Invaluable information. Gave me information, Could hear how others dealt with BTs, what their experiences were with all aspects including treatments, meds, emotional life, logistics, doctors, BT centers etc. Advice on BT centers and Drs.- could find out how people liked their doctors. Lots of emotional and practical advice and support. Some scientific help with articles, websites, journal abstracts. | None. | N/A. Wish my husband would attend one. | N?A | |
| 9 | 08/01/2007 | 05/30/2005 | Glioblastoma Multiforme | Child | F | Married | 42/74 | 2 | 2 | 0 | USA | Suburban | 1 | 0 | 4 | 3 | 2 | Y | N | N | N | 2 | 0 | 3 | 0 | 4 | 4 | 0 | 2 | 4 | 0 | 4 | 3 | 3 | 3 | N | N | N | N | N | N | 2 | |||||
| 10 | 08/02/2007 | 02/08/2007 | Glioblastoma Multiforme | Spouce | F | Married | 33/35 | 2 | 3 | 0 | USA | Suburban | 4 | 2 | 1 | 2 | 2 | Y | Y | N | Y | 4 | 4 | 4 | 4 | 4 | 3 | 4 | 3 | 4 | 3 | 4 | 4 | 3 | 3 | Y | Y | N | N | N | N | 2 | Preparedness for all the possibilities. Dissolves some of the uncertainty. We are not alone. Broader knowledge of treatments and side effects. Motivates involvement in raising awareness and funds. | Do not like to read personal attacks arising from varied opinions. Sometimes no response to my post about emotions means others may not connect with it, leaving me insecure about having posted those emotions and wondering why they are different. Insecure at times about fitting in even though it is expressed that all are accepted. | Face to face interaction with people in similar circumstances. The ability to actually see how they are impacted, even if that is just a scar...seeing how the scar is healing or has healed. Encouraged by the long-term survivors. Realization that my husband fairs well in comparison to others' deficits, and appreciation for it. Rewarding to see how my presence helps the others in some way. Additional interaction with the NO and team of doctors and nurses at the hospital. | I was speaking with a brain tumor patient and her cognitive functioning was impacted by the surgery and treatments. I explained that my husband also has trouble finding the right words sometimes even though his was located on the right temporal lobe and not the left like that for those I was speaking with. They had indicated that the left temporal lobe affects speech, thoughts, etc. I was simply making a statement of fact based on observation that in no way was intended to put my husband down. The lady proceeded to defend him by saying that any time they start cutting things out of your brain, that could happen! I felt she misunderstood me and did not want to compound the issue by trying to explain myself further. I will now simply LISTEN to the patients and converse more with the caregivers. | |
| 11 | 08/02/2007 | 06/15/1994 | Oligodendroglioma - High Grade | Parent | F | Divorced | 58/39 | 3 | 3 | 0 | USA | City | 0 | 0 | 3 | 2 | 6 | Y | Y | N | N | 5 | 3 | 5 | 2 | 4 | 5 | 4 | 3 | 4 | 3 | 4 | 4 | 2 | 2 | N | Y | N | N | N | N | 1 | Interaction with others on the same path is supportive and educational. | No | We belong to a real world support group at our medical center but we rarely attend. We do not like the way it is structured or the leaders of the group. | Yes. See #45 | |
| 12 | 08/02/2007 | 04/12/2006 | Glioma - High Grade | Parent | F | Married | 46/11 | 2 | 3 | 0 | USA | Suburban | 5 | 5 | 3 | 0 | 3 | Y | N | N | N | 5 | 0 | 5 | 0 | 5 | 5 | 0 | 5 | 4 | 0 | 4 | 5 | 4 | 1 | Y | Y | N | N | N | N | 1 | Forthright answers to very blunt questions from other people going through it. The medical community is too concerned about gathering data for their trials to consider my son as a person rather than a number. My online support family has been the ONLY ones who care about my son and our family. | Online support groups canhave some not so stable members. You just need to try not to take every thing personally when someone is having a melt down. | Not at all. I never found one. | N/A | 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. |
| 13 | 08/02/2007 | 11/30/2005 | Glioblastoma Multiforme | Spouce | M | Widowed | 63/59 | 2 | 4 | 0 | USA | Suburban | 5 | 1 | 2 | 3 | 2 | Y | N | N | Y | 4 | 0 | 4 | 0 | 4 | 4 | 3 | 4 | 4 | 0 | 4 | 5 | 3 | 2 | Y | Y | N | Y | N | N | 3 | They have been an excellent source of information, direction, and support. | No | No help whatsoever | Only that I could never find one that we were able to get to, even though we live in a major suburb of Washington, D.C. | |
| 14 | 08/02/2007 | 06/07/2005 | Glioblastoma Multiforme | Relative | F | Divorced | 62/60 | 2 | 4 | 0 | USA | Suburban | 2 | 1 | 2 | 3 | 1 | Y | N | N | N | 3 | 0 | 5 | 0 | 3 | 5 | 0 | 3 | 3 | 0 | 3 | 3 | 3 | 3 | N | N | N | N | N | N | 2 | Better abale to understand the disease and its progressin. Able to help me talk with my sister about treatments I am seeing diuscssed and people' reactions to them. A place where I can relate to the people going through similar things. | No | Not used | N/A | |
| 15 | 08/02/2007 | 01/12/2007 | Anaplastic Astrocytoma | Parent | M | Divorced | 41/12 | 2 | 4 | 0 | USA | City | 1 | 0 | 2 | 4 | 2 | Y | N | Y | N | 5 | 0 | 5 | 0 | 3 | 3 | 5 | 4 | 4 | 0 | 3 | 4 | 3 | 3 | Y | N | N | N | N | N | 4 | Meeting other families dealing with same issues, have same questuions, also health professionals offering counsel and advice.Very warm and helpful. | People sometimes get int o ridiculously heated arguments. It's also tough to read about children who pass away as my own son struggles to survive. It's hard not to experience a degree of "survivor's guilt/" | There are no real world support groups in my state. (MN) | No | 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 |
| 16 | 08/02/2007 | 05/03/2004 | Glioblastoma Multiforme | Spouce | F | Married | 61/61 | 2 | 3 | 0 | USA | Rural | 4 | 4 | 3 | 2 | 3 | Y | N | N | N | 4 | 0 | 3 | 0 | 4 | 5 | 4 | 5 | 4 | 0 | 3 | 3 | 2 | 2 | Y | N | N | N | Y | N | 3 | Learn a minimal from Specialist's in person but Research same & more possible effective treatments. | Yes. Have had only 3 individuals being negative to my possible suggestions even with my stating I'm not an Expert but only a Wife, Caretaker, Advocate & R.N. to Husband with GBM IV and after some Research have recommended they contact Specialist's (no charge) for further clarification & possible recommendations. | N/A | N/A | |
| 17 | 08/02/2007 | 10/20/2005 | Anaplastic Astrocytoma | Relative | F | Married | 44/39 | 1 | 3 | 0 | AUS | City | 7 | 7 | 3 | 6 | 5 | Y | N | N | Y | 5 | 2 | 4 | 3 | 4 | 5 | 2 | 4 | 4 | 4 | 4 | 5 | 4 | 4 | N | Y | N | Y | N | N | 2 | people with similiar situation have experienced same problems - access to drugs in US better than Australia so more information | very confronting to see very sick people when not at that stage | |||
| 18 | 08/02/2007 | 04/22/2004 | Glioblastoma Multiforme | Parent | F | Married | 41/7 | 0 | 1 | 0 | USA | Rural | 4 | 5 | 2 | 6 | 6 | Y | Y | N | N | 5 | 5 | 4 | 4 | 4 | 5 | 5 | 4 | 4 | 4 | 3 | 4 | 4 | 3 | Y | N | N | N | N | N | 3 | Online support groups help validate my emotions. It is a place to go where people understand what you are facing. They are a place to discuss options with people that have been through similar or same experiences.They help investigate all possibilites for treatments. | No | Online support groups help validate my emotions. It is a place to go where people understand what you are facing. They are a place to discuss options with people that have been through similar or same experiences.They help investigate all possibilites for treatments. | No | |
| 19 | 08/02/2007 | 09/15/2002 | Anaplastic Astrocytoma | Parent | M | Married | 50/14 | 1 | 4 | 0 | USA | Suburban | 6 | 6 | 2 | 1 | 2 | Y | N | N | N | 4 | 0 | 4 | 0 | 4 | 4 | 3 | 4 | 3 | 0 | 4 | 5 | 4 | 2 | Y | Y | N | Y | N | Y | 3 | They provide a forum to exchange ideas and experiences. Pubmed has been extremely useful in formulating a treatment plan. | I sometimes am frustrated by the superficial nature of many on-line threads. I really wish there was more scientific meet to the discussions and less "please pray for a good MRI". It's important for many people to get emotional support from "support groups"--I frankly am not looking for that. I'm fortunate enough to get support from family and friends and instead seek intellectual support so to speak. Personally, I am sometimes off-put by the religiosity of contributors or the talk of "angels" but it's easy to skip messages not to my taste/interest. I am generally very skeptical of alternative/complementary medicine but I get irritated by the arrogance of a physician who almost seems to take pleasure in crushing people's hope. | |||
| 20 | 08/02/2007 | 05/10/2006 | Glioblastoma Multiforme | Child | F | Single | 29/54 | 1 | 2 | 0 | UK | Suburban | 0 | 0 | 2 | 2 | 2 | Y | N | N | N | 5 | 3 | 5 | 3 | 5 | 5 | 2 | 5 | 5 | 1 | 5 | 5 | 2 | 2 | Y | Y | N | Y | N | N | 3 | |||||
| 21 | 08/02/2007 | 08/20/2004 | Glioblastoma Multiforme | Spouce | F | Widowed | 62/64 | 2 | 3 | 0 | USA | Rural | 6 | 2 | 3 | 4 | 2 | Y | N | N | N | 5 | 0 | 5 | 0 | 4 | 5 | 3 | 4 | 4 | 0 | 4 | 5 | 3 | 2 | Y | N | N | N | N | N | 3 | provide DETAILS that the real world omits. What to expect in the next stages. More on day to day living and how to cope. More understanding. How to deal with insurance, filing for disability, how to get more help for homecare, more caring. Too many physicians are hardened and afraid to get involved because of the ending. | no | n/a | n/a | |
| 22 | 08/02/2007 | 06/28/1997 | Juvenile Pilocytic Astrocytoma | Parent | F | Married | 50/22 | 3 | 3 | 0 | USA | Rural | 6 | 8 | 1 | 1 | 1 | Y | N | N | N | 5 | 0 | 5 | 0 | 4 | 5 | 0 | 4 | 4 | 0 | 5 | 3 | 4 | 4 | Y | Y | N | N | N | N | 3 | The support group referred me to the Friedman doctors at Duke (Henry and Allan) and we chose to go there for the second surgery. Duke was more successful at getting ALL of the tumor, doing an awake craniotomy and going deeper into the speech area without any permanent damage. Dr. Henry Friedman does EMAIL - usually answering your notes within a single day and sometimes within minutes from his Blackberry now. That is just incredible and VERY stress relieving when you are upset or confused or worried. | just sorting through 'too much email'. sadly - there are so many folks with this illness - to belong to the main brain tumor group is impossible to keep up with unless its critical to your survival. | not readily available in the rural area we live in. | n/a | |
| 23 | 08/02/2007 | 08/10/2005 | Anaplastic Astrocytoma | Parent | F | Married | 51/19 | 2 | 2 | 0 | USA | Suburban | 2 | 2 | 1 | 0 | 1 | Y | N | N | Y | 3 | 0 | 4 | 0 | 3 | 3 | 3 | 3 | 4 | 0 | 0 | 2 | 2 | 2 | N | N | N | N | N | N | 3 | To find out how real people have dealt with problems, not just read someones take on what might help | no | I went to one meeting. The Drs that talked went over everyone's head. I wish they had just answered peoples questions | ||
| 24 | 08/02/2007 | 04/23/2005 | Glioblastoma Multiforme | Patient | M | Single | 52/52 | 1 | 2 | 0 | USA | City | 9 | 5 | 3 | 6 | 6 | Y | N | N | Y | 5 | 0 | 4 | 0 | 4 | 4 | 4 | 4 | 4 | 4 | 4 | 4 | 4 | 3 | N | Y | N | Y | N | N | 2 | Better understanding and help to build confidence. | Occasional Spammers and overly noisy opinions. | N/A | no | The Musella Foundation and Virtual Trial offer a safe realistic exchange that is monitored appropriately but not too much! |
| 25 | 08/02/2007 | 05/04/2006 | Glioblastoma Multiforme | Spouce | F | Married | 60/54 | 3 | 1 | 0 | USA | Suburban | 2 | 0 | 2 | 6 | 6 | Y | N | N | Y | 5 | 0 | 5 | 0 | 4 | 5 | 3 | 3 | 3 | 0 | 4 | 4 | 3 | 2 | Y | Y | N | Y | N | Y | 1 | I don't think he would still be alive or in such good health if not for the information & guidance I've found in these groups. Personally, I feel the support & understanding of the BT community has been what keeps me sane & optomistic. | Yes. Some are clearly money oriented. In other groups I am frustrated by either the "know it all" attitude or the complete opposite: "no active participation & just wants others to tell them what to do". | |||
| 26 | 08/02/2007 | 09/25/1996 | Anaplastic Astrocytoma | Patient | F | Married | 33/33 | 0 | 4 | 0 | UK | Rural | 2 | 2 | 3 | 2 | 4 | Y | N | N | N | 5 | 0 | 4 | 0 | 4 | 5 | 2 | 3 | 4 | 0 | 4 | 5 | 3 | 3 | Y | Y | N | Y | N | N | 2 | information has heped me modify my treatment plan, particularly in regard to supplements and 'off-label' medications.also good to hear other peoples' experiences. | sometimes the things I read frighten me | n/a | n/a | |
| 27 | 08/02/2007 | 07/30/1996 | Juvenile Pilocytic Astrocytoma | Parent | F | Married | 46/18 | 2 | 4 | 0 | ISR | City | 6 | 4 | 1 | 1 | 1 | Y | N | N | N | 4 | 0 | 4 | 0 | 5 | 4 | 4 | 4 | 3 | 0 | 3 | 4 | 3 | 2 | Y | Y | N | Y | N | N | 3 | very informative, explaining, instructive, source of new ideas and things to research and follow-up | can get too intense, argumentative, emotional/depressing, ahve to be careful | helpful - note that I did not answer questions related to real world support groups in this survey because we have not belonged to one in about a decade, but at the time of the original diagnosis it was very very helpful to meet other families and to sit and talk together with people who understood | not really | |
| 28 | 08/02/2007 | 12/07/2006 | Glioblastoma Multiforme | Parent | F | Married | 43/14 | 1 | 2 | 0 | CD | Suburban | 2 | 2 | 4 | 4 | 4 | Y | N | N | N | 4 | 0 | 4 | 0 | 5 | 5 | 5 | 4 | 4 | 4 | 4 | 4 | 4 | 4 | Y | Y | N | Y | Y | Y | 3 | we live in Canada so we are about 20y behind the U.S. in research. Being part of the online support group has given me information on other treatments that are being used and access to more current information. Our NS does not seem to have any of the current information on what the top U.S. hospitals are using and everything suggested is dismissed as "not scientifically proven" | It's difficult to hear about others that are suffering but this is an extremely difficult road. | We do not have any pediatric support groups. | ||
| 29 | 08/02/2007 | 07/17/2005 | Glioblastoma Multiforme | Spouce | F | Widowed | 53/55 | 2 | 2 | 0 | USA | City | 5 | 5 | 1 | 2 | 1 | Y | Y | Y | Y | 5 | 4 | 5 | 5 | 4 | 5 | 5 | 4 | 4 | 4 | 4 | 3 | 3 | 3 | N | N | N | N | N | N | 3 | as an education tool to keep informed about the disease, treatments, results. | no | as a safe place to express feelings and comfort others dealing with these diseases | no | |
| 30 | 08/02/2007 | 12/07/2006 | Anaplastic Astrocytoma | Parent | F | Married | 51/26 | 1 | 3 | 0 | USA | Suburban | 5 | 4 | 2 | 2 | 3 | Y | N | N | N | 4 | 0 | 5 | 0 | 4 | 5 | 0 | 3 | 4 | 0 | 5 | 5 | 3 | 3 | N | Y | N | N | N | N | 3 | 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 | 08/02/2007 | 07/30/2002 | Anaplastic Astrocytoma | Spouce | F | Married | 42/44 | 1 | 4 | 3 | USA | City | 6 | 5 | 1 | 1 | 2 | Y | N | N | N | 0 | 0 | 4 | 0 | 3 | 5 | 2 | 3 | 4 | 0 | 5 | 0 | 3 | 4 | Y | N | N | N | N | N | 3 | feeling of "we are not alone" !Someone is there to support u and share positive info with u........ | not really | N/A | N/A | N/A |
| 32 | 08/02/2007 | 01/12/2005 | Glioblastoma Multiforme | Spouce | F | Married | 47/50 | 1 | 2 | 0 | UK | Suburban | 9 | 5 | 1 | 1 | 2 | Y | N | N | N | 5 | 0 | 5 | 0 | 4 | 5 | 0 | 5 | 4 | 0 | 4 | 4 | 3 | 3 | Y | Y | N | Y | N | N | 3 | It has given me the opportunity to speak to people who are travelling the same journey as ourselves, rather than just doctors who can go home at the end of the day. It's also educated me about the various treatments available throughout the world. | No bad experiences | There are no real world support groups where we live in the UK | na | |
| 33 | 08/02/2007 | 08/08/2002 | Glioblastoma Multiforme | Spouce | F | Widowed | 59/55 | 1 | 1 | 0 | USA | Suburban | 1 | 0 | 2 | 3 | 2 | Y | N | N | N | 5 | 5 | 5 | 0 | 4 | 5 | 0 | 4 | 4 | 0 | 4 | 4 | 3 | 2 | Y | Y | N | Y | N | N | 2 | I have become more knowledgeable and better able to understand the whole picture of the brain tumor journey | no negative experiences. | not applicable | not applicable | not applicable |
| 34 | 08/02/2007 | 05/23/2006 | Anaplastic Astrocytoma | Spouce | F | Widowed | 51/55 | 1 | 3 | 0 | USA | City | 13 | 9 | 2 | 3 | 2 | Y | Y | N | Y | 5 | 4 | 5 | 4 | 4 | 5 | 4 | 4 | 4 | 4 | 4 | 5 | 2 | 2 | Y | N | N | N | N | N | 3 | Knowing we were not alone in this, provided good info on side effects and treatment options, felt like we were in the know about all choices available. Personal support for my decisons were reinforced by the group whichwere very helpful | no not really but tuned out some discussions on herbs and alternatives I thought wre waste of money | I went to a caregivers group which was very helpful because they got how hard it was to be the caregiver and feel so alone and face the death of a spouse | the real world brain tumor group combine those with benign tumors and those who had curative surgery, there really was not a connection with someone who had an inoperable tumor like my husband...there was no support in that group for us | |
| 35 | 08/02/2007 | 06/15/2006 | Glioblastoma Multiforme | Spouce | F | Married | 62/65 | 2 | 4 | 0 | USA | Rural | 4 | 2 | 3 | 3 | 5 | Y | N | N | Y | 5 | 0 | 2 | 0 | 4 | 5 | 0 | 2 | 4 | 0 | 5 | 4 | 2 | 0 | Y | Y | N | Y | N | Y | 2 | I have gained a lot of knowledge in alternative treatment options. I have gained a lot of knowledge about conventional treatment options I have found additional resources from the bt lists I have been able to share with my husband issues related to his that others have posted I have been able to give my husband hope from survivor stories I have been able to give my husband a better quality of life by following up on supplements mentioned on lists I have been able to share my knowledge with others in my community with newly diagnosed bts, although I am not aware that any have followed up on information I have given them. | No | None in a rural area. Not willing to travel for one. | NA | 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. |
| 36 | 08/02/2007 | 02/25/2004 | Lymphoma | Child | F | Married | 48/68 | 3 | 4 | 0 | USA | City | 7 | 6 | 2 | 3 | 2 | Y | N | N | N | 4 | 0 | 3 | 0 | 3 | 5 | 4 | 3 | 4 | 0 | 4 | 4 | 3 | 2 | N | N | N | N | N | N | 3 | It's helped to manage my expectations of what to expect during various treatments and now that my mom is facing hospice care. | No. But I wish there was more information about her type of brain cancer - CNS Lymphoma. The on-line group almost never posts. | I went to two meetings of a support group immediately after my mother was diagnosed. It helped me to learn more about the disease and helped me feel that I was not alone. My mother also went to a cancer support group for several years, though no one else had brain cancer. | No | |
| 37 | 08/02/2007 | 06/22/2005 | Glioblastoma Multiforme | Patient | F | Married | 52/52 | 1 | 3 | 0 | USA | Suburban | 4 | 4 | 1 | 1 | 1 | Y | N | N | N | 5 | 5 | 5 | 0 | 3 | 5 | 0 | 4 | 3 | 0 | 4 | 4 | 4 | 3 | Y | N | N | N | N | N | 4 | It is helpful to know I am not alone in this journey. Also, helpful to hear about the experiences of patients who are further along in the journey than I am. People are very supportive and willing to help, and that is great. The only negative part is that you become attached to patients who ultimately die, and that's painful...it can cause me to be a little "down" for a while, but the benefits far outweigh the disadvantages. | I stopped attending an online suppor group chat room because I felt like the moderator ignored me completely--she seemed to pick up on everyone else's comments, but always bypassed mine. I felt invisible, even though the other ladies in the group were very nice. As you know, the moderator makes a lot of difference!!! | Would join a real-world group if one was available, but haven't found one. | N/A | |
| 38 | 08/02/2007 | 04/21/2005 | Glioblastoma Multiforme | Spouce | F | Married | 53/59 | 1 | 1 | 0 | USA | Suburban | 2 | 1 | 1 | 3 | 0 | Y | N | N | Y | 0 | 0 | 0 | 0 | 4 | 0 | 0 | 1 | 0 | 0 | 4 | 4 | 4 | 4 | Y | N | N | N | N | N | 3 | |||||
| 39 | 08/02/2007 | 04/21/2005 | Oligodendroglioma - Low Grade | Parent | M | Married | 46/26 | 2 | 3 | 0 | USA | Rural | 4 | 5 | 1 | 3 | 3 | Y | N | N | Y | 5 | 0 | 5 | 0 | 4 | 4 | 2 | 3 | 3 | 0 | 4 | 4 | 3 | 2 | N | N | N | N | N | N | 4 | Two main ways: 1. knowledge of treatment approaches at major brain tumor treatment centers around the USA (and world) 2. knowledge (both scientific and hearsay) concerning alternative treatments using herbs/vitamins and over the counter pharmaceuticals. | There can be a fair amount of one-sided beliefs expressed from both sides of the debate on conventional versus alternative medicine. I find that most reasonable thinking people (including doctors) are somewhere in the middle. | N/A | N/A | |
| 40 | 08/02/2007 | 01/30/2006 | Glioblastoma Multiforme | Child | M | Married | 39/68 | 2 | 4 | 0 | USA | Suburban | 6 | 6 | 2 | 2 | 1 | Y | N | N | N | 5 | 0 | 5 | 0 | 4 | 5 | 0 | 5 | 4 | 0 | 4 | 4 | 3 | 2 | Y | N | N | N | N | N | 4 | They helped me learn that the statistics are only an average and that patients can live past these time periods. | no | n/a | n/a | |
| 41 | 08/02/2007 | 11/01/1989 | Glioma - Low Grade | Patient | F | Married | 31/31 | 3 | 4 | 0 | USA | Suburban | 5 | 6 | 1 | 4 | 1 | Y | Y | N | Y | 3 | 5 | 3 | 5 | 4 | 3 | 3 | 3 | 2 | 4 | 4 | 4 | 3 | 2 | Y | N | N | N | N | N | 3 | connection on, and affirmation of, issues I deal with | overwhelming, at times, can get very negative and depressing. Sometimes people are inappropriate, oversharing, or looking for too much. | connection on, and affirmation of issues I deal with and, in some cases, friendships | overwhelming, same as with online, especially with people that conciously or unconsiously dominate the group with their own issues. | |
| 42 | 08/02/2007 | 05/03/2003 | Glioblastoma Multiforme | Spouce | F | Married | 63/65 | 2 | 1 | 0 | USA | City | 6 | 6 | 3 | 1 | 1 | Y | N | N | N | 5 | 0 | 5 | 0 | 4 | 5 | 0 | 4 | 5 | 0 | 4 | 3 | 3 | 3 | Y | Y | N | N | N | N | 3 | Dr. Musella is my hero & I love it when he posts. I have gathered sooooo much info from this forum - knowledge is strength & power. Without this info we would have had to go into this journey blindly. | ||||
| 43 | 08/02/2007 | 01/22/2007 | Mixed Glioma | Patient | F | Married | 38/38 | 1 | 1 | 0 | USA | Suburban | 4 | 2 | 1 | 2 | 0 | N | N | Y | N | 3 | 0 | 0 | 0 | 2 | 0 | 0 | 0 | 0 | 0 | 2 | 2 | 1 | 1 | Y | N | N | N | N | N | 2 | just thinking about partipating in one, but have not yet | N/A | N/A | N/A | |
| 44 | 08/02/2007 | 11/14/2006 | Oligodendroglioma - High Grade | Patient | F | Married | 32/32 | 1 | 4 | 0 | USA | Suburban | 4 | 2 | 3 | 5 | 2 | Y | Y | N | N | 4 | 5 | 4 | 5 | 4 | 5 | 5 | 3 | 3 | 3 | 4 | 5 | 3 | 3 | Y | N | N | N | N | N | 3 | Support groups (real and online) help me to feel less isolated. They give me an opportunity to learn from those who are farther along in this journey than I am... and I also get the chance to provide support and compassion for others... it's nice to be able to "give back" a little! I've also benefited from suggestions made by other patients and have received guidance on the types of questions I should be asking my doctors. | Not really. It's hard to deal with the deaths of individuals I've come to know and care for... but that sadness is part of life and is a reality in this BT world. | I love the chace to meet others in my community who are struggling with this disease. We're able to help one another out in practical ways... offering driving assistance, recommending local resources, etc. | No... other than the same mentioned above. It's difficult to see other BT patients declining and then passing away. | |
| 45 | 08/02/2007 | 11/22/1998 | Oligodendroglioma - Low Grade | Spouce | F | Married | 40/40 | 1 | 3 | 0 | USA | Suburban | 4 | 4 | 1 | 3 | 3 | Y | Y | N | N | 5 | 5 | 5 | 5 | 5 | 5 | 5 | 3 | 4 | 4 | 4 | 5 | 3 | 3 | Y | Y | Y | N | N | N | 2 | make better, more information decisions; formulate better questions to ask doctors; enabled me to offer doctors some suggestions for alternatives; empowered me to be an a more equal footing with doctors and their staff when discussing care and options; provide a sounding board | no because I am a very good researcher and am good at distinguishing the BS from the info of value | Great to meet people, exchange information, and for my husband to tell his story to others, as he does not participate in any online support groups. | none | none |
| 46 | 08/02/2007 | 07/25/2003 | Oligodendroglioma - High Grade | Patient | M | Single | 35/35 | 2 | 2 | 0 | USA | City | 2 | 2 | 1 | 3 | 0 | Y | N | N | N | 0 | 0 | 0 | 0 | 3 | 2 | 3 | 2 | 0 | 0 | 2 | 3 | 3 | 3 | Y | N | N | N | N | N | 4 | N/A | None | N/A | Nope | 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. |
| 47 | 08/02/2007 | 11/03/2003 | Glioma - High Grade | Patient | F | Married | 32/32 | 1 | 2 | 0 | USA | City | 4 | 1 | 3 | 4 | 3 | Y | Y | N | N | 5 | 2 | 5 | 1 | 4 | 5 | 3 | 4 | 4 | 1 | 4 | 4 | 4 | 3 | Y | Y | N | N | N | N | 3 | When I was initially diagnosed, the online support group was my ONLY form of support and inofmation. Since I have a brain stem tumor, my local doctor were clueless about my treatment plan and prognosis. Honestly don't think I could have made it through the first few weeks/months without this groups support. | Every once in awhile people try to push religion via personal emails more than I like, but I would get that any where. | Real world support groups have not helped me at all. | We have one local support group here in St LOuis and people there are not educated about the brain tumor world at all. They listen to their doctors and do not loook else where for traetment. I have suggested the online support group to many people in the group as well as mentioned the online resources. | |
| 48 | 08/02/2007 | 07/23/2005 | Oligodendroglioma - Low Grade | Patient | M | Married | 42/42 | 2 | 3 | 0 | USA | Suburban | 4 | 4 | 1 | 2 | 3 | Y | Y | N | Y | 4 | 5 | 4 | 4 | 3 | 4 | 5 | 4 | 3 | 4 | 3 | 0 | 2 | 2 | N | N | N | N | N | N | 3 | Hard to hear about the deaths that have happened. | Nice to get a real hug from people you build a relationship with. | |||
| 49 | 08/02/2007 | 12/25/2006 | Glioblastoma Multiforme | Spouce | F | Married | 39/37 | 2 | 2 | 0 | USA | City | 5 | 5 | 2 | 2 | 3 | Y | N | N | Y | 4 | 0 | 5 | 0 | 5 | 5 | 0 | 4 | 4 | 0 | 4 | 5 | 4 | 3 | N | N | N | N | N | N | 4 | It gives me someone to talk to that understands what I am feeling and dealing with as a caregiver. I also learn alot of new information regarding clinical trials etc. | Just some occassioanl bickering between one caregiver who thinks he know everything and likes to tell the doc of the group that he doesn't know what he is talking about. | |||
| 50 | 08/02/2007 | 11/08/1999 | Medulloblastoma | Parent | F | Married | 47/16 | 1 | 2 | 0 | USA | City | 2 | 4 | 1 | 2 | 4 | Y | Y | N | N | 5 | 4 | 4 | 4 | 4 | 5 | 5 | 4 | 4 | 4 | 4 | 4 | 3 | 3 | Y | Y | N | N | N | N | 3 | Support Group - Helped find a medication that we used off label to stop my son throwing up daily for the first 4 1/2 years (2 1/2 years off treatment). This was from a parent that had experienced similar symptoms in her son. From website - was able to obtain more information about a chemotherapy drug, one of two suggested at my son's relapse with Medulloblastoma, we chose the 2nd of the doctor's choice based on information we obtained and he remains tumor free since 5/2001 :-)!!!! | Mostly just the bickering which most moderators try to stop it in their tracks. Also, we did have a fraudulant participator on the pediatice brain tumor onlin support group. She was actually 16 y/o and had all the sob stories and people sent her "daugter" who was "dying" all kinds of gifts. We have a few doctors and other experienced people online that spotted some problems pretty quickly with her stories and started investigating so it was stopped pretty quickly. | Our real world support groups have been mostly about having FUN!!! and forgetting about BT's for an evening or a weekend. We are fortunate to be in Orlando and have support groups form Give Kids the World which provides lots of attraction tickets and fun events as well as parents night out. Another support group that is affiliated with Candlelighters (www.basecamp.org) which offers parents night out and lots of other events, parties and overnight "camps" for the kids. Also, a new group has started recently that is also affiliated nationally Starlight/Starbright Foundation, which has offered lots of fun events for the kids. | NOPE | |
| 51 | 08/02/2007 | 02/27/2003 | Gliosarcoma | Spouce | F | Married | 41/42 | 1 | 3 | 0 | USA | Suburban | 4 | 0 | 1 | 3 | 1 | Y | N | N | Y | 4 | 0 | 2 | 0 | 4 | 4 | 4 | 5 | 4 | 0 | 4 | 3 | 2 | 2 | Y | Y | N | N | N | N | 3 | It makes us aware of how the 'road' goes - it also shows us most of what we are going through it part of the deal - whether we like it or not. If we have a question it is nice to be able to ask those who are going thru the same thing - it may possibly be a question someone may also find useful answers to. | Sometimes the online support group members treat the site as a way to say 'hi' to their fellow bt fighters, however, it is really more for the flow of information. I would rather see more info re: treatments, side effects, recurrent tumor issues, etc. | Cannot convince husband, with bt, to go to a real world support group. | n/a | |
| 52 | 08/02/2007 | 11/15/2006 | Glioblastoma Multiforme | Spouce | M | Married | 40/41 | 1 | 4 | 3 | USA | Suburban | 7 | 7 | 2 | 1 | 2 | Y | Y | Y | N | 4 | 4 | 5 | 4 | 5 | 5 | 4 | 5 | 4 | 4 | 4 | 5 | 4 | 3 | Y | Y | N | Y | N | Y | 3 | There is a rich collection on various of topics. For Brain butor treatment, I rely on professional online resources (PubMed, Clinicaltrials.gov, etc.) | Not really. But sometime differences in opinions resulted in personal attacks. | It is comforting to talk with real people who are fighting the same disease together with you. | Not really. | |
| 53 | 08/02/2007 | 10/07/2005 | Glioblastoma Multiforme | Spouce | F | Married | 71/73 | 2 | 3 | 0 | USA | Suburban | 2 | 2 | 1 | 2 | 1 | N | N | N | N | 3 | 0 | 3 | 0 | 3 | 4 | 0 | 1 | 3 | 0 | 3 | 3 | 1 | 1 | N | N | N | N | N | N | 2 | Even though I am silent, I have been a member since early 2006 and find it helpful to hear that I AM NOT ALONE! | NO | n/a | n /a | |
| 54 | 08/02/2007 | 07/18/2006 | Glioblastoma Multiforme | Spouce | F | Married | 36/38 | 1 | 4 | 0 | USA | City | 5 | 5 | 1 | 1 | 4 | Y | N | N | N | 4 | 0 | 5 | 0 | 4 | 5 | 0 | 4 | 4 | 0 | 4 | 2 | 3 | 3 | N | Y | N | N | N | N | 2 | The online groups are a wonderful resource. It's sometimes difficult to immerse myself in the pain that comes through the emails, but this is our reality so we must live in it and through it. The messages of survivors and hope is always welcome. | no. | n/a | n/a | |
| 55 | 08/02/2007 | 12/26/2003 | Glioblastoma Multiforme | Child | F | Married | 38/67 | 2 | 2 | 0 | CD | Suburban | 2 | 2 | 3 | 2 | 2 | Y | N | N | N | 5 | 0 | 5 | 0 | 4 | 5 | 2 | 5 | 4 | 0 | 4 | 4 | 4 | 3 | Y | Y | N | Y | N | Y | 2 | Online support groups offer personal experiences with specific hospitals, doctors, and treatments so that you can better evaluate your current treatment plan as well as prepare for future treatments. They also help you deal with the lonliness or dispair that comes with the diagnosis of this terrible disease. You truly realize that you are never alone and that is amazing at 3 am! So much accumulated knowledge with a group this large as well as a wonderful, caring group of people truly here to help anyone who needs it. | The only negative comment with online groups is the bickering. When you are fighting this disease or helping someone you love battle it you ( should) realize that life really is too short for such negativity. In regards to websites - there are alot of websites making wonderful claims and looking professional but in reality many of them are out for the almighty $$. | n/a | In our local support group it was made up of only low grade bt's. They had little or no hope for GBM patients so we opted to avoid the negativity or looks of pity that were apparent on the face of the support group leader and some patients. | 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. |
| 56 | 08/02/2007 | 04/15/2002 | Mixed Glioma | Patient | M | Single | 42/42 | 2 | 4 | 0 | USA | City | 2 | 0 | 1 | 2 | 2 | Y | Y | N | N | 0 | 0 | 2 | 5 | 3 | 3 | 5 | 4 | 2 | 4 | 3 | 4 | 3 | 3 | Y | N | N | N | N | N | 3 | It is important to distinguish between the two. Websites like those provided by organizations like the NIH, Brain Trust etc. provide generally reliable information. I look at the NIH site for information on clinical trials, for example. "Private-citizen" websites have to be taken more carefully. I find that these almost invariably express the bias of the owner/author. I am very leery of sites that offer information for sale. I also take most of what I read in online groups very carefully. These are open forums for discussion and it is up to the consumer to separate the useful from the bad. Finally, gone through two brain tumors. During my treatment for my first, in 2002, I found groups like the MIT-hosted BRAINTMR very helpful, primarily because there was a lot of patient participation. Now, since my recurrence in Nov. 2006 to the present, I find these groups, most particularly the Yahoo! group brain-temozolomide, to be very caregiver-oriented now. That isn't bad in itself, but not particularly helpful for patients. | Not really, but having a lot of experience with the internet and doing business on-line, I don't have very high expectations of anything on-line. I think that most government sites, like the National Cancer Institute's, most "professional non-profit" sites like the North American Brain Tumor Foundation's, meet and usually exceed expectations. Other, non-professional websites and online support groups have to be carefully evaluated by the user. A lot of people caring for a person with a brain tumor or with a brain tumor themselves, are very vulnerable. They can be vulnerable to outright on-line scam artists. They can also be vulnerable to less overt forms of pressure. | "Real-world" person-to-person support groups are, in my opinion, are very helpful because they are real. Talking face-to-face with other cancer patients allows me to help others, sometimes just by being there listening to their stories and sometimes by sharing mine. Being there for other patients helps me help myself through this experience. | Yes. Sometimes people come to support groups looking for answers in others that they really need to find in themselves. These people get frustrated and tend to act out in the groups. These people are troubling and troubled, but sometimes they come, after some time, to change their attitudes. As for me, it is my responsibility to help if I can and to do no harm. | 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. |
| 57 | 08/02/2007 | 04/22/2006 | Glioma - Low Grade | Spouce | F | Married | 39/39 | 1 | 3 | 2 | USA | Suburban | 2 | 2 | 2 | 2 | 3 | Y | N | N | N | 5 | 0 | 5 | 0 | 4 | 5 | 0 | 2 | 4 | 0 | 4 | 3 | 3 | 2 | N | Y | N | N | N | N | 3 | It's like an intensive course that brought me up to speed on what to watch out for with neuro symtoms, what options we might have, what questions to ask, how valuable it is to seek other opinions, how helpful alternative treatments can be. My husband (patient) does not participate, but I inform him of everything I find out that can help us. Oneline support group posted strong recommendations for other practitioners who we could consult with. One is a neurosurgeon/oncologist at another NYC hospital. The other is a nutritionist expert in bt patients. Both recommendations were GREAT and they became important members of our health care team. It's been one year since diagnosis, and we never heard of the names of these 2 other practitioners anywhere else outside the support group. Imagine if I didn't join? This is not particular to my husband's case, but everyone's - Our main NO obviously has many patients to treat and think about. She cannot possibly spend the time we need answering our questions, mulling over possibilities. She is bound to patient privacy and cannot share her other patient's experiences and what worked and didn't work. So, the support group online is INVALUABLE to learn about other patients and take away what might work for us today, file away what might work later on. And it feels really good to be able to help others by sharing our experiences and decisions. | Not personally. | I haven't found a real world support group in my local area that I can attend. I am in north shore of suffolk. And my husband has no interest or energy in joining or socializing in a support group. | n/a | 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". |
| 58 | 08/02/2007 | 01/19/2004 | Oligodendroglioma - Low Grade | Patient | F | Married | 36/36 | 1 | 4 | 0 | USA | Suburban | 6 | 8 | 1 | 3 | 2 | Y | N | N | N | 5 | 0 | 5 | 0 | 3 | 5 | 0 | 3 | 4 | 0 | 5 | 4 | 4 | 3 | Y | N | N | N | N | N | 3 | |||||
| 59 | 08/03/2007 | 07/10/2006 | Oligodendroglioma - Low Grade | Spouce | F | Married | 39/46 | 1 | 4 | 0 | USA | Suburban | 2 | 2 | 2 | 4 | 4 | Y | N | N | N | 5 | 5 | 2 | 2 | 5 | 5 | 3 | 4 | 4 | 3 | 4 | 4 | 3 | 3 | Y | Y | N | N | N | N | 2 | |||||
| 60 | 08/03/2007 | 01/05/2007 | Glioblastoma Multiforme | Patient | F | Married | 46/46 | 1 | 4 | 0 | USA | Suburban | 8 | 8 | 1 | 2 | 1 | Y | N | N | N | 5 | 0 | 5 | 0 | 4 | 5 | 0 | 2 | 4 | 0 | 4 | 5 | 3 | 3 | Y | Y | N | Y | N | N | 1 | Mainly research and sharing of tx / trial info. | ||||
| 61 | 08/03/2007 | 05/29/1997 | Oligodendroglioma - High Grade | Patient | F | Single | 46/46 | 1 | 3 | 0 | CD | City | 1 | 2 | 3 | 3 | 1 | Y | Y | N | Y | 4 | 4 | 3 | 4 | 3 | 2 | 3 | 2 | 4 | 4 | 4 | 4 | 3 | 2 | Y | Y | N | N | N | N | 3 | When I was first diagnosed I was seeking information and the websites were very helpful in finding and sorting out information. I found the online sites helpful but only participated a little. I learned a lot from reading other peoples postings and questions. | No. | It was helpful to feel that I was not alone and to have other people who had survived a brain tumour to talk too. I did find that quite quickly I was the one supporting the new members of the group as my experience and medical background(I am a nurse) was helpful to other people in the group. | After about a year or so I was one of only two of the original group members who were still able to attend the group. I found that quite depressing and felt guilty that I was doing so well and going bck to work. | |
| 62 | 08/03/2007 | 03/15/2006 | Anaplastic Astrocytoma | Spouce | F | Married | 38/36 | 2 | 3 | 0 | USA | Rural | 5 | 4 | 3 | 4 | 3 | Y | N | N | N | 4 | 0 | 5 | 0 | 4 | 5 | 0 | 4 | 4 | 0 | 4 | 4 | 4 | 2 | N | Y | N | Y | N | N | 2 | Became aware of different treatment options | None | N/A | N?A | |
| 63 | 08/03/2007 | 12/29/2005 | Glioblastoma Multiforme | Spouce | F | Married | 55/33 | 2 | 2 | 0 | USA | Rural | 2 | 0 | 4 | 6 | 6 | Y | N | Y | Y | 4 | 2 | 4 | 2 | 3 | 3 | 3 | 3 | 3 | 3 | 3 | 4 | 3 | 3 | N | N | N | N | N | N | 3 | mainly learning new trials and venting complaints | no | Only support group I've attended was to meet and see David Bailey | NO | |
| 64 | 08/03/2007 | 01/19/2004 | Glioblastoma Multiforme | Spouce | F | Married | 45/45 | 1 | 1 | 0 | USA | Suburban | 6 | 2 | 1 | 4 | 3 | Y | N | N | N | 5 | 0 | 5 | 0 | 5 | 5 | 0 | 5 | 4 | 0 | 4 | 5 | 4 | 4 | Y | Y | N | N | N | N | 3 | meeting people who are going throught the same problems. Caregivers and BT patients have insights that Drs. cannot provide | no | |||
| 65 | 08/03/2007 | 03/03/1991 | Glioblastoma Multiforme | Patient | M | Divorced | 52/52 | 3 | 1 | 0 | USA | City | 2 | 0 | 1 | 2 | 1 | Y | Y | N | N | 5 | 1 | 0 | 3 | 5 | 0 | 0 | 1 | 2 | 1 | 5 | 4 | 0 | 0 | N | N | N | N | N | N | 2 | |||||
| 66 | 08/03/2007 | 10/13/2006 | Glioma - Low Grade | Relative | F | Married | 50/44 | 1 | 2 | 0 | USA | Suburban | 2 | 2 | 2 | 2 | 4 | Y | N | N | N | 4 | 0 | 5 | 0 | 5 | 5 | 0 | 4 | 4 | 0 | 4 | 4 | 3 | 3 | N | Y | N | N | N | N | 2 | Information about symptoms, side effects of chemo and other meds. Ecourages advocacy for patient. Encourages venting. | no | N/A | N/A | |
| 67 | 08/03/2007 | 11/09/1995 | Anaplastic Astrocytoma | Patient | M | Married | 59/59 | 3 | 3 | 0 | USA | City | 5 | 9 | 0 | 0 | 2 | Y | N | N | N | 4 | 0 | 0 | 0 | 4 | 4 | 0 | 0 | 4 | 3 | 3 | 3 | 3 | 2 | Y | N | N | N | N | N | 3 | |||||
| 68 | 08/03/2007 | 07/05/2000 | Mixed Glioma | Parent | F | Widowed | 57/36 | 1 | 3 | 0 | USA | Suburban | 5 | 1 | 5 | 2 | 2 | Y | N | N | N | 5 | 0 | 5 | 0 | 4 | 5 | 0 | 3 | 4 | 0 | 4 | 5 | 2 | 3 | N | Y | N | N | N | N | 2 | Information, consideration, methods of understanding, a sense of not being alone, and understanding have definitely helped me deal w/my son's illness. Virtual Trials has definitely contributed on a professional level, and I believe is a postitive experience for people lucky enough to have found it. Being an active member, it is nice to not be alone with this disease. | NO | N/A | N/A | |
| 69 | 08/03/2007 | 08/31/2004 | Glioblastoma Multiforme | Spouce | M | Widowed | 53/50 | 3 | 4 | 0 | USA | Suburban | 6 | 2 | 1 | 2 | 3 | Y | N | N | N | 4 | 0 | 4 | 0 | 4 | 5 | 0 | 4 | 3 | 0 | 3 | 4 | 3 | 2 | Y | N | N | N | N | N | 3 | |||||
| 70 | 08/03/2007 | 05/08/2001 | Mixed Glioma | Patient | F | Divorced | 53/53 | 2 | 4 | 0 | USA | Rural | 1 | 0 | 1 | 2 | 1 | Y | N | N | N | 4 | 0 | 0 | 0 | 3 | 4 | 0 | 3 | 3 | 0 | 3 | 3 | 2 | 2 | Y | N | N | N | N | N | 3 | Helped me see I am not alone. I live in a rural area and attend a cancer support group meeting monthly, but I am the only BT survivor there. | NO | N/A | N/A | |
| 71 | 08/03/2007 | 06/26/2006 | Craniopharyngioma | Patient | F | Single | 36/36 | 1 | 1 | 0 | UK | Suburban | 1 | 0 | 1 | 0 | 2 | Y | Y | N | N | 4 | 0 | 5 | 4 | 3 | 5 | 4 | 2 | 4 | 4 | 4 | 1 | 2 | 2 | Y | N | N | Y | N | N | 3 | Would feel very lonely otherwise as I'm based in the UK and there's no online support group for cranios here. Also was good to realise it's not a death sentence. | Some peoples responses are unecessarily negative and thoughtless. | Rehab, free support, meeting fellow sufferers, counselling etc. | No | |
| 72 | 08/03/2007 | 04/19/2006 | Glioblastoma Multiforme | Parent | M | Married | 49/21 | 1 | 3 | 0 | USA | Suburban | 8 | 8 | 2 | 3 | 0 | N | N | N | Y | 0 | 0 | 0 | 0 | 4 | 0 | 0 | 4 | 0 | 0 | 4 | 4 | 3 | 2 | Y | N | N | Y | N | N | 3 | Found information about the disease found best treatment facilities, and places for second opinions searched clinical trials, used Pubmed to review research and clinical trial results | No, we haven't used support groups per se. we do look at ABTA, NABTA and this site | NA | NA | |
| 73 | 08/03/2007 | 05/20/2002 | Glioblastoma Multiforme | Relative | M | Married | 45/38 | 2 | 4 | 0 | SP | City | 8 | 8 | 1 | 6 | 2 | Y | N | N | N | 4 | 0 | 5 | 0 | 4 | 5 | 0 | 3 | 4 | 0 | 4 | 5 | 4 | 2 | N | N | N | N | N | N | 2 | Access to information taht would be impossible to find by oneself in a limited time and a stressful situation. By tha support of discssing issues with people in similar situation. | No. | Not joined. | Not Joined. | 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. |
| 74 | 08/03/2007 | 07/12/1993 | Anaplastic Astrocytoma | Patient | F | Married | 49/49 | 3 | 3 | 0 | USA | Suburban | 7 | 5 | 2 | 0 | 2 | Y | N | N | N | 5 | 0 | 5 | 0 | 3 | 4 | 3 | 4 | 4 | 0 | 4 | 4 | 3 | 2 | Y | N | N | N | N | Y | 2 | sharing feelings openly without risk of hurting nthose you love, getting a wide variety of responses from others travelling the same road | they tend to repeat the same controversial discussions every 6 months as new patients join | I went twice and found it way too depressing | ||
| 75 | 08/03/2007 | 07/14/2001 | Glioblastoma Multiforme | Spouce | F | Widowed | 57/56 | 2 | 4 | 0 | USA | Suburban | 7 | 6 | 3 | 2 | 2 | Y | N | Y | N | 4 | 0 | 5 | 0 | 4 | 5 | 0 | 5 | 4 | 0 | 4 | 5 | 4 | 2 | Y | N | N | Y | N | N | 4 | As a caregiver, it was helpful to hear what other caregivers were going through. Also helpful to hear what treatments other people were getting and what helped them. | The only negative experience I has was having one past caregiver tell me not to respect what my husband wanted, but to ignore his wishes and send mri's etc to Duke for evaluation. I did not think it was appropriate for her to make that statement. | |||
| 76 | 08/03/2007 | 01/25/2003 | Oligodendroglioma - Low Grade | Patient | M | Married | 58/58 | 1 | 1 | 0 | USA | Suburban | 4 | 2 | 1 | 2 | 0 | N | N | N | N | 4 | 0 | 4 | 0 | 3 | 5 | 0 | 4 | 3 | 0 | 3 | 3 | 3 | 3 | Y | N | N | N | N | N | 3 | |||||
| 77 | 08/03/2007 | 06/23/1986 | Anaplastic Astrocytoma | Friend | F | Divorced | 61/60 | 1 | 1 | 0 | USA | Suburban | 0 | 0 | 1 | 1 | 1 | Y | N | N | N | 5 | 0 | 5 | 0 | 4 | 5 | 5 | 0 | 4 | 0 | 5 | 3 | 3 | 1 | N | N | N | N | N | N | 2 | My friend who is a resident in the nursing home where I work has felt she's benefited by hearing about other people and how they are getting along after surgeries, etc. She likes knowing there are "others out there." | There was one person on the Big List who sounded a bit unreal......it was just a bit uncomfortable, that's all. | N/A | N/A | |
| 78 | 08/03/2007 | 12/08/2002 | Anaplastic Astrocytoma | Spouce | F | Married | 49/41 | 1 | 3 | 0 | USA | Suburban | 8 | 8 | 1 | 3 | 1 | Y | Y | Y | Y | 3 | 5 | 5 | 5 | 5 | 5 | 5 | 4 | 4 | 5 | 5 | 4 | 4 | 3 | N | N | N | N | N | N | 3 | learn about other treatment options, how others have coped with situatioins | no | learn about other treatment options, how others have coped with situatioins being with other people conferences have a chance walk we have a great support group | no | |
| 79 | 08/04/2007 | 02/15/1989 | Anaplastic Astrocytoma | Spouce | F | Married | 50/60 | 1 | 2 | 0 | USA | City | 2 | 1 | 3 | 5 | 4 | Y | Y | N | Y | 5 | 4 | 5 | 3 | 4 | 5 | 3 | 4 | 4 | 3 | 4 | 4 | 3 | 3 | Y | Y | N | Y | N | N | 4 | My husbands tumor was diagnosed, treated, etc. in 1989. I was totally lost and alone until finding an online group of other BT families, caregivers, etc. That was in 1998 and I truly feel it saved my life. At least my sanity. There is no place on earth where you will find others who actually "get it". This beast is like no other cancer. people look and say, "oh he looks great, he's all cured now, right?" | Never any really horrid experiences as we are all so protective of each other. As in life there are people who try to take advantage, offer false hope, etc. | There are lovely people at the BT support group offered by our neuro oncs hospital. Its very hard for me to share how I really feel in front of folks new to this journey. After 20 years we've seen the worst of the worst. I have no desire to take hope when there is every possibility that there may be some from them.all situation are different. Plus its just too hard to arrange for help at home or evenharder to take my husband along. Online I get instant love and understanding from the best people on earth. | AS above I do not get alot of help from live group discussions. I tried group theraphy once and hated that also. Maybe its just me. | Thanks! |
| 80 | 08/04/2007 | 10/28/1999 | Mixed Glioma | Spouce | F | Married | 38/43 | 3 | 4 | 0 | USA | City | 7 | 2 | 1 | 1 | 1 | Y | N | N | Y | 3 | 0 | 5 | 0 | 4 | 5 | 0 | 3 | 4 | 0 | 0 | 4 | 0 | 0 | Y | N | N | N | N | N | 3 | The online group has been most important as a source of personal support for me. Like many spouses of people with brain tumors, I often feel very alone as though no one else has ever struggled with what I am going through. The support group for spouses changed that. Especially at the time that I discovered it, it really changed my life. It especially helped me recognize some of the subtle changes in my husband's personality. I almost thought I was imagining things until I heard of others with the same or similar experiences. | The only negative experience revolves around differences in personal experience. Sometimes people of different experiences--for example, if their spouse died very quickly--will fail to understand or affirm the experiences of spouses of long term survivors. This has the potential for being very hurtful since the support group is supposed to be a place where all of us are free to share our feelings honestly. I guess it is sometimes hard to put yourself in someone else's shoes when you are sufferring. Also, we assume that since we have BTs in common, we will be automatic friends almost--but of course we may have many differences too that work againt common understanding. | N/A | N/A | |
| 81 | 08/04/2007 | 04/13/2004 | Glioma - High Grade | Spouce | F | Married | 42/49 | 3 </ |