Cure Alveolar Soft Part Sarcoma International (iCureASPS)

Greetings
I wanted to post a reply in reference to this forum and members posting, reading and some not participating...

i would like to address the many talks i have had with members of this forum and members that just read this forum. That some new an old patients with ASPS are not posting because at this time they just emotionally cant deal with it and i understand that as i am sure all of you do! I know the information from these patients is very important to the well being of all of us and am sure that if there is some thing they will post it. No one wants to not help others it is just *again* hard for some to post it makes it more real and hurts more.

Ok in reference to the posting and not posting in this forum by people...
We are rare we have a rare cancer and if we do not talk many can die. We must share this information are doctors have huge loads of patients none of them are 100% focusing on ASPS and to live as a group we MUST post and share. If you cannot post then please thru the forums send me a mail i will not respond to you so this way you have no involvement in the forums other then sharing this information and i will use the name you choose. When this information is posted it will be stated in the end of it that this was posted for *information only* It can be as simple as i eat peanut butter an it makes me happy or it makes the drug better or what ever it is that you do to help you that you can share. Or a drug or a doctor that made a difference or hurt you. If we do not share this information i am sorry but people can die. If i didn't have this forum i would have been a mess they wanted to use drugs on me and i am stable an it has been 2 1/2 years. If i would have taken the drug chances are i would not be now! If i would have listened i would not have had 33 radiation treatments to my leg an wouldn't be having problems from this radiation. If i didn't have thie forums i would have waited on surgery's and also not known to keep an eye on my brain for tumors an that MRI is the ONLY way to see the small tumors in time to have them removed and by whom had removed these and how well they did! !

People not posting is like walking by a person laying on the ground an continuing on your merry way! Please, don't do that we need to have as much information as possible...

Ok, not on to the personalities that have seemed to clash. I can say that i care about everyone that has posted in this forum. There are some i miss very much an i pray they return. The delivery by some in this forum at times has been seen in some ways as harsh. I don't think it was in any ways meant that way an we are all patients. We are all under stress we all have pain from this wether it be deep emotional pain or pain from active ASPS tumors or from the treatments. No one that is posting here is doing great in one manor or another an a little compassion all the way around is in order. If you are posting and others have said you are a bit harsh then mellow out. Or for the person that reads the post relies that you are also under stress and you maybe reacting because of this. I have also felt upset by posts but i kept reading an i am glad i did...

There is no time or room in any of our lives for drama an closing a door to learning how to help ourselves right now when every minute means the world to a cancer patient!

All posts by everyone are important and no one has a right to make it impossible for others to have access to these posts it is up to the family and the patient what they read and use!

Information no matter how it is gained is power!

Sharing is how this happens!

If you make close friends here great!
If not then at least you are gaining information to help you live an be treated with this rare cancer that not many even know about!

I have met and talked to everyone that posts in the forum and I also have contact with ASPS patients outside this forum and i can say that i love every single person i have spoken to! I think that it just such an emotionally charged place that there is bound to be bumps!

Share an be caring to yourself and others and walk softly because this is a place of healing...

Amanda, you make some good points.

We know that there are a lot of lurkers on the forums who for one reason or another choose not to participate. I am guessing that there are 4x more people who aren't even registered than those who participate. This is definitely a problem, considering how rare our disease is, and how little information we have.

1) We could have much more data and experiences than we already do.
2) The patients could discuss their issues and others could offer opinions and suggestions to them, whereas right now they take in information passively. I am sure that this would help them pick better treatment options, as necessary.

A lot of time goes into sharing the info, and running this board and website. Yet, it seems that most people who benefit from our discussions here offer nothing in return. Personally, I think that this is profoundly unfair. It was suggested to make these forums member access only, but we won't. We will continue to offer this information publicly and free of charge or membership restriction because our focus is getting rid of ASPS.

PS In my opinion, becoming an active member of the discussion board vs. passive reading will offer a definite and measurable survival advantage, in addition to helping the community. We are good at brainstorming here - even the most difficult cases. All of you lurkers should think about that long and hard.

Dear Amanda and Ivan,
Thank you for both of your well expressed entries, for your valued insights, and for your encouragement for others to actively participate on this Board with shared researched and anecdotal treatment information, advice, and opinions. Through the years I too have continued to urge and encourage more active participation from ASPS Community members, and have found it very difficult to understand/comprehend why anyone would not avail themselves of as much information as possible in fighting this poorly understood disease. Certainly if people want to protect their privacy and don't feel comfortable sharing their name for whatever reason, they are welcome to make anonymous entries, but it is vitally important that as many people as possible share their information because this is such an extremely rare disease and there are so relatively few ASPS patients and such a limited amount of anecdotal experience treatment information to learn from. I know that it can be emotionally difficult to read about some of the harsh realities of this disease, but unfortunately we can't just put our heads in the sand and pretend/Hope that the disease will just go away, because tragically that won't happen. Knowledge is empowering, and to deny oneself the invaluable shared knowledge that is available on this Board for any reason is to deny oneself of one of the most powerful weapons that we have with which to fight this very challenging battle. If the patient themselves find it too hard to read the Web site and to participate, hopefully a family member or close friend will do so on their behalf, as happens with the majority of the patients on this Board. The important thing is that someone share treatment information and updates for each patient. Without the information which was thoughtfully shared on this Board by English ASPS patient Paul Mavers three years ago, we would not have known about Cediranib in time to stabilize Brittany's then rapidly progressing disease and to shrink/destroy the unresectable/untreatable pancreatic met that would have almost certainly taken her precious young Life by now. Cediranib was unknown to Brittany's Seattle oncologist at that time, and was unavailable for ASPS patients in the United States and everywhere else in the world except England and Canada. Although Cediranib is unfortunately not a permanent cure, and we know that Brittany will probably eventually develop resistance to it, it has given Brittany two more years of precious Life and Hopefully many more, and it has bought us two years in which to continue our relentless research for a treatment which will provide sustained stability. Without anecdotal treatment information which was shared by other ASPS Community members, we would not have known about the risks and failure of Whole Brain Radiation (WBR) which in every case that we have known and observed where WBR was used for treatment of ASPS brain mets, it has not only failed to shrink the brain mets and to prevent their increased growth and progression, it seems to have made the brain mets spread more aggressively and ultimately, in every case that we personally know about, the patient tragically lost their battle. Because of this, we have continued to refuse Brittany's radiation oncologist's repeated recommendations for WBR, and instead Brittany has undergone Gamma Knife treatments, for individual brain mets, which were successful as long as the mets were under one centimeter. Because Cediranb can cross the blood brain barriar, it has thankfully thus far prevented the development of any new brain mets for the past two years.
I know that there are a few people who have decided against continued participation on this Board because they were offended, upset, or hurt by some of the opinions that were expressed. That is unfortunate, but it is certainly their choice to make. It must be remembered that we are a community of people from all over the World with different personalities and from many different cultures and backgrounds brought together by a common cause which is the search for an effective treatment and cure for ASPS. Because of our differences in personality, culture, background, and experience, opinions may be expressed in different ways, sometimes more bluntly, but certainly with no intention of being harsh or hurtful. A few of us have been on this difficult ASPS journey much longer than others, and because of that we have done more research and had more extensive experience with the disease. As a result of some of the treatment mistakes that we have personally experienced, and those which we have observed with others, we may have stronger opinions about various things which we feel obligated to share in order to try to prevent other patients from making and suffering from the same mistakes, and possibly tragically losing their Lives as a result. Hopefully the advice which is offered and the opinions which are shared on this Board will be accepted in the spirit with which they are given which is genuine caring, concern, and compassion for other ASPS patients and their families. As Amanda has so wisely said, this is a place where people come for healing. The ONLY battle that should be going on is the one that we are all fighting to win against ASPS, and we MUST work together to achieve the victory that we all seek.Take care everyone, and please become more active in your participation on this Board. Yours and all of the other ASPS patients Lives can truly benefit from it, and may depend upon it.
With special caring thoughts and continued Hope,
Bonni