This is a pretty old registry, but if any are interested, although the home page for alveolarspsarcoma.net has been taken down, I think the registry files have not been removed...at least not all of them. for instance - if check out:
http://www.alveolarspsarcoma.net/patientBio.cfm?id=81
For some reason, when I checked random numbers less than 81, I just get errors, but adding numbers, you will find more histories of ASPS, out to 135. I didn't check all the numbers and I copied a lot of the files before, but I just want to let everyone know because some may find the info interesting.
Some people tried early generation TKIs and antiangiogenesis inhibitors, while many were doing conventional chemo or repeat surgery.
Olga, feel free to move this post. I wasn't sure where it belonged.
Found the Old Alveolar Soft Part Sarcoma Registry
Re: Found the Old Alveolar Soft Part Sarcoma Registry
Hello 
To me the link only shows one man info
Maybe it is this pc i am on,,,
I am sick of the fact that none of us can read what the others with ASPS have posted about themselfs to help all of us! I have called them and i am going to ask for either accses or all the files to be sent to us. This is very unfare and it is a sad thing that so many with this desease posted info ment for us and that we cant get to it
Amanda
PS i have now started to call them and will keep trying.. ths is not right to keep this from us!
To me the link only shows one man info
Maybe it is this pc i am on,,, I am sick of the fact that none of us can read what the others with ASPS have posted about themselfs to help all of us! I have called them and i am going to ask for either accses or all the files to be sent to us. This is very unfare and it is a sad thing that so many with this desease posted info ment for us and that we cant get to it
Amanda
PS i have now started to call them and will keep trying.. ths is not right to keep this from us!
“Many times it is much more important to know what kind of patient has the disease, than what kind of disease the patient has”.
"The microbe is nothing, the soil is everything)""
Claude Bernard~
Amanda
"The microbe is nothing, the soil is everything)""
Claude Bernard~
Amanda
-
Fictional
Re: Found the Old Alveolar Soft Part Sarcoma Registry
Oh - what you need to do is keep changing the link by adding numbers. Some of them aren't there - but like change the last number to 83, then 84 etc. Do you get it? I also have an excel chart, but I don't know what the rules are about reposting information.
I could summarize the data too. I've also been in touch with some folks who have had stage IV ASPS for more than 15 years, and could gather their information together in one post.
I found Clare's information in the registry - and it was helpful (she was on cediranib and now is off) - I also corresponded with her before, but don't want to bother her if it's posted somewhere.
I could summarize the data too. I've also been in touch with some folks who have had stage IV ASPS for more than 15 years, and could gather their information together in one post.
I found Clare's information in the registry - and it was helpful (she was on cediranib and now is off) - I also corresponded with her before, but don't want to bother her if it's posted somewhere.
Re: Found the Old Alveolar Soft Part Sarcoma Registry
Hello
I will add the numbers on the ends ty
omg 15 years!! this is very good to hear! I wish they would post here there info because that wuld bring so much hope to others!
I am not sure on the rules but i do know that when this information was posted it was for ASPS paitents to read and the fact that it is being kept from us is wrong and i want it either re posted on there site so we can link to it or to be given to someone here so there voices are not lost!
I would love the chart if you wouldnt mind sending it to my e mail addy AmandaVWA@aol....com
Wow! 15 years!!! After all i have been thru in this last year and being told that i may only have five years and now to get clean scans *I am still waiting on the final report* and now to hear this is wonderful news! 15 years brings hope to myself and so so many! I would like to flood are area with these things so when people are diagnosed with this or talk to a PMD that has no idea what they are talking about they can come here and read and smile a lil bit I lived in the areas of this forum when i was diagnosed and i think others do also...
I am so happy to hear *15 years and many* together
I will add the numbers on the ends ty
omg 15 years!!
this is very good to hear! I wish they would post here there info because that wuld bring so much hope to others! I am not sure on the rules but i do know that when this information was posted it was for ASPS paitents to read and the fact that it is being kept from us is wrong and i want it either re posted on there site so we can link to it or to be given to someone here so there voices are not lost!
I would love the chart if you wouldnt mind sending it to my e mail addy AmandaVWA@aol....com
Wow! 15 years!!! After all i have been thru in this last year and being told that i may only have five years and now to get clean scans *I am still waiting on the final report* and now to hear this is wonderful news! 15 years brings hope to myself and so so many! I would like to flood are area with these things so when people are diagnosed with this or talk to a PMD that has no idea what they are talking about they can come here and read and smile a lil bit
I lived in the areas of this forum when i was diagnosed and i think others do also...I am so happy to hear *15 years and many* together
“Many times it is much more important to know what kind of patient has the disease, than what kind of disease the patient has”.
"The microbe is nothing, the soil is everything)""
Claude Bernard~
Amanda
"The microbe is nothing, the soil is everything)""
Claude Bernard~
Amanda
Re: Found the Old Alveolar Soft Part Sarcoma Registry
*Update*
I called both phone numbers conected with the site that has this information and they have not called back...
I wil try other ways now...
what is needed from this site?
paitent bios and what else :/
I called both phone numbers conected with the site that has this information and they have not called back...
I wil try other ways now...
what is needed from this site?
paitent bios and what else :/
“Many times it is much more important to know what kind of patient has the disease, than what kind of disease the patient has”.
"The microbe is nothing, the soil is everything)""
Claude Bernard~
Amanda
"The microbe is nothing, the soil is everything)""
Claude Bernard~
Amanda
-
Fictional
Re: Found the Old Alveolar Soft Part Sarcoma Registry
Because people voluntarily posted their information there, it's valuable if left it accessible on the Internet. Some people tried different agents that didn't seem to work - or they posted the side effects...and although it's obviously imperfect (people are different), it can help add more information to the decision-making process.
It would be great if they would put all their data back on the Internet. They may be intending to do this, I don't know - maybe they had a malware attack or something crashed?
We don't really have the permission to repost the information that was there.
It wasn't the greatest format- very hard to search and compare, for instance, but it was the largest collection of patients with ASPS - available on the internet.
It would be great if they would put all their data back on the Internet. They may be intending to do this, I don't know - maybe they had a malware attack or something crashed?
We don't really have the permission to repost the information that was there.
It wasn't the greatest format- very hard to search and compare, for instance, but it was the largest collection of patients with ASPS - available on the internet.