I communicate with at least 5 other ASPS ladies who do not post on here. There is a reason for this. You guys need to remember that everyone's body is different and reacts differently to this disease. Coming down on people for what they do for treatment is irresponsible. I will get my advice from one of the best cancer hospitals in the country, I no longer see a need to be on here.
I wish everyone the absolute best. No one deserves this terrible cancer and I hope everyone keeps truckin' along with what they decide to do for treatment, and kicks its ass.
LCMA
ASPS patients not posting.
Re: ASPS patients not posting.
LCMA, thank you for rising this subject and it would have been very helpful to hear from other people too.
it is ultimately everyone's personal decision about the extend of the participation. There are few people like me, Ivan, Bonni etc. that here for a long time and we really feel responsible to let people know everything we have learned so far including mistakes that we made in our treatment management. You do not expect us not to let someone know about the treatment options available and the time/size dependent limitations that are there if we are aware of it, right? It would have been equal to non-providing the help to someone in need. Being in denial is the last thing that helps when dealing with ASPS and we always try to let people know from the best of our knowledge if we see that they miss on some valuable options (without speculation about the expected benefit from the treatments that are not proven or not tried as the reality is it can harm someone instead of helping when it does not work as expected). I am trying to remove or correct all forward looking statements about expected benefit of the treatments if there are no case based (anecdotal) or published (pier reviewed) evidences that it works as it said.
I know that there are many people that do not post here as everyone's comfort zone is different, some of them contact me and other members directly, some never do and it is normal. The statistics is that from the 100% people reading the board only about 20-30% are usually active (registered and posting) members. I am glad that they read this board on an everyday basis (as I can see this activity) and get to know what our people here do with what result so they can adjust their plans accordingly and I wish to everyone a best of luck. I have to say though, that if anything positive comes from their treatments, it would have been helpful to other people to hear about that, as you should give back to community when you benefited from its efforts at some point of the ASPS journey.
The information on this board is not intended to replace a medical advise but to be shared between the members with the goal of further discussion with your doctor. Everyone should realize that there are no oncologists that see ASPS patients on an everyday basis anywhere and only pooled cross-border knowledge can reach any level of statistical significance. Please, read all the latest publications about ASPS that are collected in a library section of the main page and in the ASPS related publications section of the forum to be able to better understand your situation and treatment options available out there.
it is ultimately everyone's personal decision about the extend of the participation. There are few people like me, Ivan, Bonni etc. that here for a long time and we really feel responsible to let people know everything we have learned so far including mistakes that we made in our treatment management. You do not expect us not to let someone know about the treatment options available and the time/size dependent limitations that are there if we are aware of it, right? It would have been equal to non-providing the help to someone in need. Being in denial is the last thing that helps when dealing with ASPS and we always try to let people know from the best of our knowledge if we see that they miss on some valuable options (without speculation about the expected benefit from the treatments that are not proven or not tried as the reality is it can harm someone instead of helping when it does not work as expected). I am trying to remove or correct all forward looking statements about expected benefit of the treatments if there are no case based (anecdotal) or published (pier reviewed) evidences that it works as it said.
I know that there are many people that do not post here as everyone's comfort zone is different, some of them contact me and other members directly, some never do and it is normal. The statistics is that from the 100% people reading the board only about 20-30% are usually active (registered and posting) members. I am glad that they read this board on an everyday basis (as I can see this activity) and get to know what our people here do with what result so they can adjust their plans accordingly and I wish to everyone a best of luck. I have to say though, that if anything positive comes from their treatments, it would have been helpful to other people to hear about that, as you should give back to community when you benefited from its efforts at some point of the ASPS journey.
The information on this board is not intended to replace a medical advise but to be shared between the members with the goal of further discussion with your doctor. Everyone should realize that there are no oncologists that see ASPS patients on an everyday basis anywhere and only pooled cross-border knowledge can reach any level of statistical significance. Please, read all the latest publications about ASPS that are collected in a library section of the main page and in the ASPS related publications section of the forum to be able to better understand your situation and treatment options available out there.
Olga
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Bonni Hess
- Senior Member
- Posts: 1677
- Joined: Mon Aug 14, 2006 11:32 pm
- Location: Sammamish, WA USA
Re: ASPS patients not posting.
Thank you Olga for your well written response to LCMA's message in which she expresses feelings of dissatisfaction towards our Board. You have echoed my thoughts on the issues which LCMA raised and done an excellent job of addressing her concerns. Having closely worked together with Yossi Landesman and you on the founding of the CureASPS organization and our excellent Web site, and as a very active and involved CureASPS Board of Directors member and Discussion Board participant, I have always felt that the critically important goals and purpose of this DISCUSSION Board are to provide a forum where there can be an open and honest sharing of verifiable researched and anecdotal treatment information by ASPS patients and their families. There is no reason for any opinions or advice that are offered to be viewed in an adversarial way. The only adversary that we have is this insidious disease, and we should all be working together to battle it, instead of battling with those who are only trying to help. Because it is a DISCUSSION Board, the sharing and discussion of personal input, advice, and opinions based on research, personal observations, and personal experiences have always been, and should continue to be, encouraged without anyone having to be concerned about someone possibly being offended by information and opinions that have been thoughtfully and graciously shared out of genuine caring and concern. No one should feel intimidated to express their opinion or share advice, nor should they be criticized or censored as long as the information and opinions that they have expressed are based on factual research, data, and experience, as Ivan's well meaning advice to LCMA was.
Since precious Lives continue to be tragically lost to this little known and poorly understood disease, it is obvious that no one, including even highly respected sarcoma oncologists, the patients, and the patient's family members, know for certain what treatment is best. That is why shared personal observations and anecdotal treatment information is so vitally important because we can all learn and Hopefully benefit from each other's experiences. Certainly, different patients may respond differently to different treatments, and everyone needs to ultimately make their own treatment decisions based on their own personal needs, situations, and the best information available at the time. Speaking from our personal experience through the past almost ten years of Brittany's challenging ASPS battle, we have learned that often the best information and advice has come not from the doctors, but from our own relentless personal research, constant and continued networking with other ASPS patients and their families, and shared researched and anecdotal treatment information from this Board. Personally, I am extremely grateful for any and all information, advice, and opinions which are offered by others on this Board. I may not always agree with all of it or follow it, but I would certainly never be offended by it because I am grateful that people are willing to take the time and make the effort to share their input with me. The more information that is provided and the more opinions that are offered, the more material there is available on which to base a decision.
I find it very difficult to understand why anyone fighting this difficult battle would allow misplaced anger, ego, or hurt feelings to prevent them from availing themselves of the invaluable researched and anecdotal information that is available on this Board, but it is certainly a person's prerogative to make that choice. Yossi, you, and I have all worked very hard and tirelessly to make this resource available to the international ASPS Community, and I continue to be very proud of it and all that we and it have accomplished. For those who are critical of the Board and us personally, I will not apologize because we do the best job that we can in providing a forum for shared information, discussion, and support, and we have devoted our time and energy to trying to help everyone in the ASPS Community with special caring and concern while continuing to fight our own childrens' disease.
I am deeply grateful to you and Ivan for all that you do as administrators of this Web site, and for your greatly appreciated and highly respected shared information, advice, and opinions based on your extensive research, knowledge, and experience.
With deepest gratitude, special caring thoughts, and continued Hope,
Bonni.
Since precious Lives continue to be tragically lost to this little known and poorly understood disease, it is obvious that no one, including even highly respected sarcoma oncologists, the patients, and the patient's family members, know for certain what treatment is best. That is why shared personal observations and anecdotal treatment information is so vitally important because we can all learn and Hopefully benefit from each other's experiences. Certainly, different patients may respond differently to different treatments, and everyone needs to ultimately make their own treatment decisions based on their own personal needs, situations, and the best information available at the time. Speaking from our personal experience through the past almost ten years of Brittany's challenging ASPS battle, we have learned that often the best information and advice has come not from the doctors, but from our own relentless personal research, constant and continued networking with other ASPS patients and their families, and shared researched and anecdotal treatment information from this Board. Personally, I am extremely grateful for any and all information, advice, and opinions which are offered by others on this Board. I may not always agree with all of it or follow it, but I would certainly never be offended by it because I am grateful that people are willing to take the time and make the effort to share their input with me. The more information that is provided and the more opinions that are offered, the more material there is available on which to base a decision.
I find it very difficult to understand why anyone fighting this difficult battle would allow misplaced anger, ego, or hurt feelings to prevent them from availing themselves of the invaluable researched and anecdotal information that is available on this Board, but it is certainly a person's prerogative to make that choice. Yossi, you, and I have all worked very hard and tirelessly to make this resource available to the international ASPS Community, and I continue to be very proud of it and all that we and it have accomplished. For those who are critical of the Board and us personally, I will not apologize because we do the best job that we can in providing a forum for shared information, discussion, and support, and we have devoted our time and energy to trying to help everyone in the ASPS Community with special caring and concern while continuing to fight our own childrens' disease.
I am deeply grateful to you and Ivan for all that you do as administrators of this Web site, and for your greatly appreciated and highly respected shared information, advice, and opinions based on your extensive research, knowledge, and experience.
With deepest gratitude, special caring thoughts, and continued Hope,
Bonni.
Re: ASPS patients not posting.
In response to this suggestion, we have introduced a new forum - http://cureasps.org/forum/viewforum.php?f=60 - which allows for anonymous posting without any discussion, or feedback from other members.